Wearing Red Shoes

Into the woods

2012-02-03T14:00:00.001-05:00

Tomorrow is one-year since my neck surgery. I have always been good at remembering dates - people's birthdays, anniversaries and such. In my own life, however, this also means I am good at remembering other dates - my MS diagnosis, my cancer diagnosis, melanoma surgery, neck surgery. I can't help but have the dates engraved in my mind. I do breathe easier with each "anniversary" as the memories of the pain, both physical and emotional, begin to fade.

I like to hope that years from now I look back on this period in my late 20s-early 30s and say that it was the worst, or at least one of the worst times of my life; however, I am not so naive to believe that all these years have bought me a free pass for the next 20. Life has been shoving that lesson down my throat for a while now.

I get it, Life. You're not fair.

You don't pass around the grief, pain and loss equally.

Some of us bear more than our share and others get off with no more than a few scratches. You're not a bowl full of cherries. I get it.

My sister-in-law gave me a book for Christmas, Stephen Sondheim's "Hat Box" which includes all the lyrics to everything he's ever written. Sondheim's Into the Woods is one of my all-time favorite musicals. It weaves together different fairy tales along with stories about relationships and of people's journey through the "woods," and clearly Sondheim is talking about more than just those clusters of trees behind your house:

You go into the woods, where nothing’s clear, where witches, ghosts and wolves appear.
Into the woods and through the fear, you have to take the journey...
Into the woods you go again, you have to every now and then.
Into the woods, no telling when. Be ready for the journey.

The way is dark, the light is dim...

The chances look small, the choices look grim.
But everything you learn there will help when you return there.

Into the woods you have to grope, but that’s the way you learn to cope.
Into the woods to find there’s hope of getting through the journey.

God, he's really a genius. Isn't he saying that we all go through the woods at various points in our lives? Everyone's woods are different and some people spend (a hell of a lot) more time there than others. Life forces us, often time and time again, to push through the horrors and the awful realities. But in doing that, we are learning how to fight. We pick up our machetes and slice our way through the forests or we climb a tree for a bird's eye view to find our way out.

Going into the woods forces us to get creative, to take a hard look at ourselves and ask what is it that keeps us going? What is it that makes people want to fight their way through the forest while others are too afraid to move and stay stuck there for years, maybe forever? Is it fear that motivates me? Is it anger? Is it hope? Each time we get thrown deep into the woods and find ourselves alone in a dark, scary place - what matters is that we keep fighting and remind ourselves that with every horror Life throws at us, hopefully there will be some wonders, too. And if Mr. Sondheim is correct that "everything you learn there will help when you return there," then maybe that means we get out of the woods a little faster the next time.

I wish I had the answers. I wish I knew why so many of us keep getting thrown back into the woods and tossed to the wolves. I wish I knew why other people are lucky enough to spend hardly any time there at all. I wish I could go to the festival (only true Sondheim nerds will get that one!)

At any rate, talking about life's challenges is less frightening with a nice musical theater metaphor, isn't it?

Tis the Season

2011-12-01T10:49:00.002-05:00

So this morning I woke up and came downstairs and flipped our wall calendar over to December and instantly had a minor panic attack realizing that I haven't even "updated" the wall calendar for this month and already it is overflowing with stuff and here it is December 1st and I already feel stressed out, overextended and overbooked.

There's a reason that the highest number of relapses occur in the MS community in December.

This is not to say that I dislike the holidays. I like the holidays very much. I like decorating my house, I like singing Christmas carols, I like attending parties and seeing family and friends. The problem is the MonSter does not share my same affection for socializing and I have learned (often the hard way) to pace myself much MUCH more than I would like to.

In other words, I have had to become better at saying, "No." Which is just about one of the hardest things in the world for me to do! I want to attend all the holiday concerts, recitals, shows, go to all the cocktail parties and spend time with everyone I care about. I feel very blessed to have received 5 (yes FIVE) new evites this week to parties/events throughout the month but when I consult my calendar each event would mean either double-booking myself that day or else giving up the ONLY afternoon/evening I had marked off for the purpose of resting on that particular weekend.

I know people love the holidays and it's a fun reason to throw parties, entertain, plan fun events. And I wish I could attend everything and not end up paying a very high price for it. I also wish we didn't have to cram everything into a 25 day timeframe! I mean, c'mon people - I know your houses are decorated and you want to show them off and you love eggnog and gingerbread - but why can't we make up our own rules here? Cause when I keep flipping my calendar - January, February, March - I got nothing! Not a darn thing. By mid-January I will be bored out of my mind, dying to get dressed up all cute and go to a party.

Valentine's Day?

President's Day?

Arbor Day?

Anyone...anyone? (Bueller...?)

Sadly, I know it's everyone's God-given right to throw a wonderful Christmas party complete with decorated tree, carols, eggnog and far too much rich, delicious food. It's just sad that a party-loving gal like me has to say no to so many fabulous invitations, that's all.

Tis the season...to pace myself as best I can!

XOXO

We're # 1!!!

2011-08-10T16:55:00.002-04:00

A HUGE congratulations to Team Wearing Red Shoes for officially making the record books as the top fundraising team in the state of Georgia.

We raised a total of $27,968 for WalkMS 2011 and I could not be more proud of everyone involved, all our team members and our incredibly generous donors and corporate sponsors.

Red Shoe World Domination is only a matter of time... :-)

XOXO

Part of My Sky

2011-06-15T20:02:00.000-04:00

Recently, I was at a routine doctor's appointment and he asked,
"How's your MS doing? Is it stable?"
My knee-jerk reaction was,
"No. I have relapses every 3-4 months."
But that's not true.
I haven't had a relapse in 22 months. That's almost Two Years.
And that, my friends, is the clinical definition of: stable.

Stable. Even now that word feels so foreign. It was something far away, that I wasn't ever going to be able to achieve no matter how hard I tried...and yet here I am. Sure, no doctor would look at my chart and call me nice things like "healthy." In fact, after reviewing my chart most doctor's favorite word to describe me is "complicated."

Okay, fine. I'm complicated. But I'm also stable!

Finally, I can look at MS as something other than this all-consuming, relentless beast that can't be quieted for more than months at a time. Finally i can see it as this thing that i live with that does affect much of my life and my day-to-day decisions, but that it's just one piece of who i am. it doesn't own me like it used to, and it sure as hell doesn't define me.

There is a great murder mystery series by a man named Stephen White. The books revolve around Dr. Alan Gregory, a psychologist who always seems to find himself wrapped up in some homicide, which he inevitably helps to solve. The books are fast-paced and entertaining and the supporting cast of characters are truly unforgettable...from the sarcastic but lovable police detective to the wonderful wacky neighbors and fellow psychologists.

And there is Lauren Crowder, the alluring and sharp-witted Assistant District Attorney with whom Alan falls in love. The series also follows their romance as it evolves. And the real zinger is that Lauren has MS.

The way he writes this character, depicting her daily battles, her ups and downs, her determination...it quickly becomes obvious that Stephen White knows this disease very well. But much like his fictional character, Mr. White chooses not to disclose his relationship with MS. It remains a mystery as he makes no mention in either his novels or on his website about it. Does he himself fight the MonSter? Is it a loved one? In truth, it doesn't matter because not only is he an entertaining mystery writer, but he gives a wonderful face to MS - a fighter who refuses to let this disease take her down.

One of my favorite passages (and there are many) occurs in an early book in the series, in one of the few moments where Lauren opens up and talks about her disease:

"Why me? Why not me? I've been eligible for many blessings in my life. I've been fortunate in so many ways. I think it would be remarkably arrogant to rule myself ineligible for any hardship that might come along. Indeed, why not me? I'd like to think I'm as well prepared as anybody for living with this illness...Multiple Sclerosis is one of the constellations in my sky. It's there. Like the Little Dipper. Sometimes it's obscured, sometimes it's the brightest light in the sky. but it's always there. I don't think about it all the time. When I do look up, it's there. That's all, it's just there. Part of my sky."

For over four years this has been my dream.
Even if I wake up tomorrow with some horrible relapse, I know now that this place of acceptance exists for me.
I know that "stable" was achievable.

MS is nothing more than a MonSter shaped constellation.
It's just there, that's all.

It's just part of my sky.

A Little Creativity

2011-05-24T22:29:00.005-04:00

In case you haven't by now heard the news, we had our biggest and best WalkMS ever this year. Our team exploded and we had over 130 members on Walk Day (after starting with only 23 in 2008!) Even more impressive is how much money we raised. As of a couple of weeks ago we were just over $26,200 - but that wasn't enough for MY team of overachievers!

The last week of April the Pace Academy Theater Dept put on a hilarious show called "The 25th Annual Putnam County Spelling Bee" and its director (aka my stepdad) George Mengert and his cast and crew took it upon themselves to try and raise a few extra dollars for the National MS Society. They donated 10% of all the ticket sales and after each performance, all the actors were in the lobby collecting donations to fight MS and encouraging the audiences to give generously. Each of those high-schoolers stood out in the lobby, not just waiting passively for donations, but encouraging each theater patron that passed them by to support their cause.

Their perseverance and tenacity paid off and after 3 performances, the cast/crew of "Spelling Bee" sent in a check for $1878 to the NMSS! I am so proud of these kids and of George's creative idea that I could just burst! A huge thank you to my stepdad, to Beth Barrow-Titus and to the amazing cast: Tony Papadopoulos, Benjamin Harris, Hannah Hoff, Lauren Gold, Kitty Cook, Larisa Bainton, Megan McCurry, Colin Barham, Patrick Corbett, Ben Hirsch, Sterling Butler, Cory Bush, Sam Downey, Taylor Williams, Kate Kolbinsky & Alexandra McCorkle. Thanks also to Nicole Hammons & Michelle Yancich and to Phil Bush for the PR help and to Stephanie and Rebecca Husk for taking charge each night and rounding up those dollars!

So as of today, Team Wearing Red Shoes is #1 in the state of Georgia having raised $28,332! Holy cow, Batman!!!

Also wanted to give a quick plug to my childhood bff, Jennifer (Macchia) Frankowski who has signed up for a NMSS fundraiser in Philadephia next month. Here's the link if you want to check out her event, the MudRun and support her on her crazy endeavor.

Jennifer and I celebrate our 25th anniversary as friends this year and she is the most awesome wife, mother, daughter, sister and friend and I am so lucky to know her.
Knock 'em dead, sister!

So you see, with a little creativity and a little help from my friends, we can basically conquer the world. Or at least get a heck of a lot closer to conquering MS. Be warned - Your days are numbered, MonSter....

The Final Countdown...WalkMS 2011

2011-04-05T17:11:00.002-04:00

We are days away from Team Wearing Red Shoes’ 4th WalkMS and we are still $1500 away from beating last year’s team record. We have the biggest team yet with over 80 members and each and every one is working tirelessly to get us over that $20,000 mark this year. And we need everyone’s help!

This year is not so much about a few people giving large amounts – it’s about lots of people giving what they can, however small. We have had more $20 donations than ever and we could not be more thrilled, because it means there are still people out there who care about what happens to people living with multiple sclerosis and to awesome nonprofits like the National MS Society. We care very much and that’s why we are determined to break $20,000 this year.

The walk is this Saturday, April 9th at Piedmont Park and any support from our friends is appreciated more than you know. Give what you can and thank you from the bottom of our hearts.

XOXO, Caroline & Team Wearing Red Shoes http://nationalmssociety.org/goto/wearingredshoes

Fun Stuff

2011-03-21T10:06:00.000-04:00

In an effort to try and lighten up and have some fun - I took a cake decorating class. It was the first time I had ever used fondant and it reminded me of playing with Play-Doh. You take a big white chunk of fondant, mix in gel coloring then knead the crap out of it, roll it out and voila! So for my first time, I felt fairly good about this cake. Guess I was feeling girly, what with the purple and pink.
Oh and the top photo - I classify that as fun, too. Those are all of my Get Well Soon cards and they always manage to put a smile on my face. All in all, I am continuing to heal - on the inside and out.

XOXO

2011-03-03T17:00:00.002-05:00

Tomorrow marks 4 weeks since my surgery. I'm healing well. Week 3 saw a big improvement in my nerve pain and Week 4 has been about the same. The one thing I thought I had escaped was the post-op emotional Aftermath. You know, the whole getting hit with a big old tidal wave of emotions that knock you on your butt for a little while? I have decided it is my least favorite part of the healing process.

Hence, I have been crying a lot recently. Some tears are ones of joy and relief that the pain is finally improving and that there is a light at the end of this tunnel...a valley at the end of the mountain? A calm after the storm?? I can never remember which analogy I've been going with!

Other tears are because I’m afraid. I don't trust that the light I'm seeing isn't just some lone, dusty flashlight instead of the bright light of day waiting for me to emerge. I don't trust the ground beneath my feet anymore. It's sort of a pessimistic, even cynical point of view, I know - but it's honest. Other than trying to flat out convince myself that everything will be alright now, I think that time is the only thing that will prove to me that I really am okay, that it isn't a trick, that the next mountain/storm/mudslide/quicksand/tunnel isn't just waiting for me right around the corner.

And lastly - the pesky, neurotic tears - the judgmental ones that are disappointed that I am not "handling" myself and my emotional responses better. The ones that say, "Jeez, Caroline - get over yourself and stop your whining and your fear and move the hell on without all these tears already!"

Ah, the flipside of the Type-A-Perfectionist - she often comes with a self-critic harsher than any who ever worked for the New York Times. So instead of trying to will myself to “Get over it,” I have decided the better solution is to focus on two things for the next 60 days:

1)To silence or at the very least ignore the Critic. She does me no good right now. If I have to, I will plug my fingers into my ears and shout, “La la la, I can’t hear you!!”

2)I am going to try and have some fun, dammit. (Sorry but that just really needed an emphatic “dammit” on the end. I tried it without and it was totally not the same.) I’m going to remember what it’s like to leave the house other than to go to doctor appointment, go out to dinner (which I have sadly only done once in 4 weeks), see friends, plan parties, go to the movies, whatever I can think of that makes me happy right now.

If I had a friend who had survived cancer and 2 major surgeries in 8 months and done it all with grace and class, I would tell her to have some fun...dammit. I would tell her she deserved at least that. I would tell her she deserved more than that. I would tell her that she didn’t deserve to have to undergo all that crap, all while juggling a whole host of other diseases on the side. I would tell her it is okay to cry for a little while, whenever she wants to, for any reason at all or for no reason at all. I would tell her she is stronger than she thinks she is but that she shouldn’t feel guilty when doesn’t feel so strong.

I would tell my friend all of those things without judgment or hesitation. Then I would take her to the movies, buy her the biggest tub of popcorn with butter and salt, choosing a stupid romantic comedy if she needs to laugh, action/adventure if she needs to escape or drama if she needs to cry in the comfort of a dark theater.

I need to be a better friend and tell myself all of that, keep repeating it, write it up and down my arms in magic marker if I have to. I will be forgiving and patient and kind. I will stop judging myself for not having everything figured out yet. After all, my friends and family are all human (I think) and they are not perfect. So I should stop expecting myself to be…or at least, that’s the plan.

Free at last!

2011-02-23T11:50:00.002-05:00

Great appointment with the surgeon yesterday. My x-ray looked great. Everything where it is supposed to be, my new disc nice and centered in between my vertebrae. All in all, I am ahead of schedule in terms of healing (an overachiever, obviously) and so the doctor said I can start leaving the house in "small doses," as long as I promise not to overdo it. Which as you know, for me, is quite difficult. But I've done pretty darn well staying house-bound and not losing my mind for almost 3 weeks here. I'm even impressed with myself.

So maybe I will start to see you all out there in the real world in the coming weeks. In the meantime, enjoy the above photo of my x-ray that Chris snapped with his phone. The brighter white thing towards the bottom of my neck is my new disc. I'm officially bionic!

Two Weeks Down

2011-02-18T09:41:00.003-05:00

In some ways I can hardly believe it's been 2 weeks since my surgery. In other ways it feels like it has been 2 years, mainly due to the whole "house arrest" thing. I like my house and I can always find things to do, so it's the not the boredom it's really the lack of freedom and independence and even more so the lack of interaction with people. As Chris was upstairs working the other night and I was downstairs watching TV he called down and said,
"Were you trying to say something to me?"
"No," I replied, "I must have been talking to the TV."
To which he says, "Yeah, you've been doing that alot lately."

You cannot help but laugh at what happens on a totally unconcious level when a person is home alone for such extended periods of time. I talk to myself regularly anyway, but talking to the television (was I talking to the characters on the show? Did I think they could hear me?) is a new low. Don't get me wrong. I'm laughing as I write this. It is pretty ridiculous.

But then yesterday I found myself getting truly angry - at the weather.
Yes, the beautiful, un-winter-like, high 60s, not a cloud in the sky weather we've had this week. Which would be perfect, if I could get out and actually do something - even drive around in my car with the windows down and the music blaring sounds amazing.

But when you are under doctor's orders to not ride in a car, all you want is cold, rainy, gray weather that doesn't make you feel so bad about being stuck inside. I could drink lots of tea, work on my puzzle, watch movies. So I woke up yesterday pissed off and finally forced myself to put on real shoes and go for a walk around my block (which is one of the few things I AM allowed to do!) And it improved my mood.

My goal is to make it to Tuesday, when I go to the doctor for my follow-up x-rays and visit. We will make sure everything is holding up, staying where it should be and I will ask what he thinks of me leaving the house some by the end of next week. Two of my first Triple Threat Theater students are starring in "Beauty and the Beast" at Pace next weekend and I really want to be there to see them!

In the meantime, I have a lot of awesome people who have made these 2 weeks bearable:
To the many meal providers: Barbara & Paul, my sister Bets, Mandy, Patty & Johnny, Kimmy, Van & Rebecca, Louie & Ray, the Holders, the Wiseners, the Dieterichs, Aunt Mary, Jeanette & my Greek family - thank you!

A big thanks to my "personal shopper" Peg, who has made 2 trips to Publix for me and brought me a much needed frappucino yesterday!

And to my many visitors who have come by (or are still planning to come by) to cheer me up and cheer me on: Angela & Kenney, Mom, Dad, my sister Erin and my nieces and nephew who made me cards and cupcakes, my pilates instructor & friend Marci, my voice student Hannah who brought soup and stayed for tea...I know I'm missing people but you know who you are and you have all kept me sane.

Thank you to my Mom who woke up at god-only-knows-when to get to Northside Hospital at 5:15am so Chris and I wouldn't be alone and who stayed until after 5pm to make sure we were okay. And to my Dad who arrived almost as early, stayed through my surgery, went home and came back with my stepmom that night to check on us.

Thank you to my mother-in-law Barbara who brought much needed sustenance and cheer to Chris and my parents in the waiting room. And thank you to my stepdad who not only visited me in the hospital (and I know how much you love hospitals, George) but has called often with gossip and stories to cheer me up. Thanks to my grandparents for calling to check on me and for making me laugh - crucial to healing!

And a big thank you to Tiffany St.John and the folks from one of my favorite restaurants, Muss & Turners who brought over food yesterday as their get-well-soon gift to me. (So now you all have to go eat there seeing as how they are so generous: www.mussandturners.com or their other newly opened place www.localthree.com).

And one last interesting bit of useless knowledge. Apparently the "retail price" of the new Synthes Cervical Pro-Disc in my neck: $16,500. Yep, that's right. My neck is now worth more than both of our cars combined! Granted, there will be "insurance adjustments" and whatnot but how insane is the MSRP on an artificial disc?!? We are extremely blessed to have good insurance and I am extremely blessed to have a husband who works so hard at his job (and at taking care of me) so that we can have good insurance, a decent income and a nice house in which to spend my house-arrest. I love you Christopher.
XOXO

The Long and Winding Road

2011-02-10T16:33:00.004-05:00

I am experiencing deja-vu as I sit here and write that "Recovery is not a straight path." While my surgery went really well, turns out that the physical pain and mental anguish associated with recovering from neck surgery - well, it's not for the faint of heart.

Trying my best to manage the pain both around the actual incision and the pain towards the back of my neck which I imagine is from the digging around they had to do to find the disc, pull it out and then make room for the new one and tightly wedge it in there so it doesn't move. At least that what it feels like happened. My neck is still swollen, not too bad visibly but swallowing is slightly difficult. I have take small bites and tilt my head a certain way and even then it is pretty uncomfortable. And as luck would have it, apparently nerves have a long memory, especially for pain, and sometimes even after the actual pain-inducing object has been removed, your nerves still can flare-up and remember the torture you put them throough for 2 long years. At least that's what my doctor tells me is happening as of a couple days ago when my nerve pain returned after a nice long holiday weekend off.

I'm not really worried long-term. I do think the surgery worked and this is merely the climb back down the mountain which can sometimes be harder than the climb up. Case in point: we were watching this tv show called, "Everest: Beyond the Limit" or something like that last night and they say there are more people who die on their descent down Mt. Everest than those who die trying to make it to the summit. Which is to say, coming down the moutain sure ain't easy either. Yesterday and today have been really rough between the fatigue, the surgery site pain and my old nemesis nerve pain. Living with it all at once is not a lot of fun. Again, I'm not worried about the long-term, but the short-term is just, well, crappy.

Mentally speaking, just like being in an MS relapse, recovering from major surgery is very isolating. My surgeon first told me I was not allowed to drive or even ride in a car for FOUR weeks. We told him that was impossible, since Tysabri beckons to me every four weeks and I am due for my fix of it on the 28th. So I think now I am under house arrest for three weeks, essentially.
One week down, two to go.
Here's hoping I don't lose my sanity or that Chris doesn't divorce me before February is over.

Thanks for the visitors who were able to come by this week.
If you didn't get a chance to pop by, don't worry - you still have at least 2 more weeks in which I will be here day or night, rain or shine. So if you find yourself in the area or want to drop in for a cup of tea, I'm here...working my way down the mountain.

When I feel better...

2011-01-28T11:00:00.000-05:00

For as long as I can remember I have made lists.

Maybe it’s genetic. My dad is 5-Star General list-maker - I am like, a Lieutenant or something. We make little lists for everyday things (pick up dry cleaning, book doctor appt, go to Target, etc.) We make lists of things we want and/or need to do "sometime" but who knows when (buy a new toaster, insulate pipes, clean out that closet...) We also make lists of the things we want to experience and/or accomplish at some point in our lives.

In the past few years I have often told myself that I will get to all these things "when I feel better.” Except that for almost five years my life has been filled with these medical mountains I keep climbing and conquering but there always seems to be one more in my path.

Despite beating melanoma and finally getting my MS stable, I’m still in horrific pain every day with this ruptured, herniated disc in my neck that has been hanging out with me for two years now.

So I’m scheduled for neck surgery one week from today, Friday the 4th. My second major surgery in less than 8 months with a 4-6 week recovery period, assuming it works, which I believe it will.

I hope it will.
Actually - I’m terrified that it won’t work.

Okay, and yeah - I’m scared out of my freaking mind about having a neurosurgeon open up my neck, and be so close to things like oh, my vocal cords and these things called laryngeal nerves and well, my spine!

So, you see, all this stuff I have on these lists, well, they're just going to have to wait until when I feel better.

Then the cynical side of me can't help but think that this IS my life now. I may never really be, nor ever really see myself as "healthy" ever again. So what choice do I have?

On the days when I am scared, tired, in pain and feeling hopeless, I guess I have to find the courage and energy to do the things that I care about and to make the best of them in spite of feeling not-so-great about 50% of the time. It sure as hell isn't what I imagined my life would be like but here I am.

And much like going back to school at age 29 with MS, each list item is terrifying because it means making yourself vulnerable and facing failure – again and again and again. It means leaping into the unknown and having faith that somehow you will land on your feet, or at the very least someone will reach out a hand to help you up after you’ve fallen flat on your face.

"All of our dreams can come true; if we have the courage to pursue them." - Walt Disney

To be perfectly honest, I don’t feel "better" yet. I may never feel “better.” And still the world goes round.

I guess that means I am just going to have to be a little more creative in accomplishing my goals. And every so often I just have to scream, "To hell with you MS!" or "Screw you Cancer!" and go ahead and do what I want to do.

I owe that to myself. That's my responsibility to myself. As an old friend once reminded me, "Responsibility is the ability to choose your response. You choose how you react to your life." He was right.

Underneath the pain, the diseases, the depression, the anger and fear, I do have the ability to choose how I respond to these mountains and roadblocks put before me. I don't always choose correctly. But even on days when I'm certain the Universe is never going to tire of beating me senseless over the head, at the very least I can remind myself that I am not as powerless as I may feel. There are still things I can control.

Today I choose hope. I hope this surgery will give me a better quality of life with less pain. I hope this will be my last surgery for a very long time.
Forever would be best.

Wearing Red Shoes...Walking for the cure

2011-01-11T18:48:00.003-05:00

Join us for WalkMS 2011 - Saturday, April 9th at Piedmont Park.
To sign up or donate click here.
XOXO,
Caroline

Two-Way Street

2010-12-29T15:16:00.001-05:00

This Christmas was the first in several years that I haven't been in the middle of or still recovering from a MonSter-related relapse. For that alone, it has been one of the best holidays I can remember. But this whole month has given me an altered self-image, allowed me to take off the "Patient" persona for awhile and see myself as something other than just that. Having been subject to such debilitating things and needing others’ help so frequently, I had forgotten what it feels like to really take care of someone else.

A few weeks ago my dad had foot surgery and I went over to check in on him and to take food to him and my stepmom. For once, it was me that had to remind someone else to sit down, to rest, to let me get up and fetch this and that, to prop up pillows and help him get comfortable, to ask if he needed any medications, etc. After making Dad some lunch, my stepmom came into the room doubled over in pain and it turned out she needed to get to the emergency room immediately. Luckily, I was there and able to drive her to the ER and try to get her the help she needed. I went to the nurses’ station to nicely ask for warm, clean blankets when the IV nurse didn’t know what she was doing and got blood everywhere. Then I went back to ask (a little less nicely) when a doctor and/or medication would be arriving because my stepmom was in excruciating pain. I waited with Sheryl until her mom came to take my place and I went back to check on the other patient. I then made more trips back and forth bringing overnight bags, making dinners, etc. Over ten hours later I made it back home, exhausted but very thankful that I was there and able to help. (She is doing much better now, by the way, and slowly getting back to her normal, high-speed pace!)

Fast forward to last week and my poor husband had his wisdom teeth out, which many of you may remember how unpleasant the whole thing is. I drove him to surgery and this time it was me who took pre-op and post-op notes from the doctor and drove my drugged-out, gauze-packed husband home. And for once it was me who spent the weekend fetching, medicating, feeding, pillow-propping and reassuring him that even though it hurt like hell and he felt terrible, that it would get better.

I hope that my tone here is appropriately conveying that none of this ever felt like a burden or a chore and not for one minute was I resentful, annoyed or otherwise bothered by taking care of people I love. I was just so grateful to be able to be the "Caregiver" for a change. It gave me a perspective I had not had for quite some time - that in some ways, being the Caregiver can be just as hard as being the Patient.

As the patient, I am used to the feelings of guilt, and often feeling tired, alone, helpless and in pain. I had forgotten the worry, the fear, concern, the fatigue and feelings of helplessness that go along with being the caregiver. In the first 24-48 hours following surgery, Chris needed a lot of my help. More times than I can count he said, "I'm so sorry you have to take care of me like this," and every time he voiced such sentiments I just shook my head and replied, "You never need to apologize to me for that." Meanwhile I was mentally shaking my head at myself for the thousands of times I have apologized to him for having to take care of me. I guess I’m not the only person out there who feels guilty for needing other people’s help!

No one wants to feel weak and vulnerable like that. I sure as hell can't stand it. But I think this month has taught me that taking care of those we love and being taken care of is a two-way street. Maybe it’s our parents who take care of us until one day they need our help and the tables turn. Some of us may have a sick spouse who gets better and some have spouses who stay sick for their entire married lives. It isn't always equal as to who plays what role more often and it definitely isn't fair. But I think it is inevitable that we all get to play the roles of both "Patient" and "Caregiver" at least once in our lives.

And since I know that hoping for everyone I love to remain perfectly healthy, strong and accident-free for the rest of their natural lives is maybe a bit unrealistic, I will instead hope that I get more opportunities to play Caroline the Caregiver and give back to those who have given so much of themselves to Caroline the Patient.

Wishing everyone a safe, healthy and happy new year.

Pain Scale

2010-11-14T22:02:00.000-05:00

To date, I have drafted 4 different blog posts on the subject of "pain."
I have never been able to finish any of them for two reasons:

1. The pain interrupts me during every rough draft and every rewrite and the mere thought of sitting down to edit/write/rewrite makes my pain spike out of control since sitting and typing makes my herniated disc very angry.
2. I keep trying to write eloquently about Pain.

I have since concluded that there is nothing eloquent about Pain and for now, I give up trying to write about it in such a way. There are no words that can capture the true nature of relentless, mind-numbing, bone-jarring, cruel and intense pain.

Which is to say: Pain sucks. It sucks really really bad.

It affects everything I do and every decision I make all day long. The choice of whether to stand and eat my dinner versus sit on the floor versus sit in a chair leaves me in the kitchen holding onto my plate with tears streaming down my face, because I am so afraid of choosing the wrong thing which will lead to agonizing pain for hours to follow. If I have to live at this level of chronic pain for too much longer I think I'm going to lose my mind.

I am over it. I am so totally over it.
There are no words to describe how over it I am.

So I will merely leave you with this, courtesy of my friend Kimmy, which is the closest I have found to capturing the true nature of pain, while still being funny at the same time. Mind you, it is a sick, twisted sort of funny.

(Note: The following contains adult language and mildly disturbing cartoon stick figures. Viewer discretion is advised.) Alternate Pain Scale.

The Power of the Con

2010-09-17T14:21:00.001-04:00

Living in the midst of an 'Aftermath' can be exhausting. Not only is your body working hard on healing itself but your psyche is working just as hard to put the broken pieces back together. It is alot of work, it can make your head spin sometimes and you can feel stuck in the mud worrying you may never get out again.

While I believe you have to wade through the muck before you can fully appreciate what's on the other side, sometimes you just need a break from all that mess. You need to remember what its like to just have some fun. Sometimes you need a muck-free weekend
My muck-free weekend was DragonCon.

Yes, its true: I am a geek, a nerd, a dweeb, a sci-fi-freak. I love all things Star Trek and Star Wars, vampires, werewolves and superheroes. I come from a long line of self-professed dorks.
On Labor Day weekend thousands of nerds just like me take over downtown Atlanta attending parties, seminars, panels, contests on their favorite comic books, movies, TV shows and books. Last Friday my Dad and I went and enjoyed some of the best people-watching in the country, we checked out the dealer rooms and we might have even snagged a Star Trek actor's autograph. On Saturday we attended the annual DragonCon parade with a bunch of friends. If you have never been, go ahead and make plans to go next year. There is not a more impressive display of geek-ness anywhere in the world, plus the costumes are insanely awesome.

On Sunday, Chris, Van, our fellow geek-friend Rebecca and I all dressed up (yes, in costumes) and marched down for an afternoon at "The Con." Here's a picture of us.
The result of all this was twofold:

1) We had So. Much. Fun. for 4 hours I forgot that I just went through horrible surgery and survived cancer. For 4 hours I forgot that I have MS. Its so rare to have several hours at a time when this happens and when it does I am so grateful for it I could just burst into tears.

2) We discovered that dressing as superheroes at a convention full of nerd gets you a lot of attention! There we were just walking through hotel lobbies and complete strangers would come up asking to take our picture. I cannot even count how many pictures we posed for, but there is a real chance it surpassed a hundred. I kept thinking, this is the closest I will ever feel to being a celebrity! It was the self-esteem boost I needed. Having recently felt so self-conscious about the new scars on my face and my ravaged scalp, I cannot tell you how much it meant to just feel that I could look normal - okay, well maybe not 'normal' but we did look good!

The makeup is long gone and my long black wig has been put away. My scars are still pink and fairly visible, my hair is thinning, my scalp is covered with scabs and with bright red new skin forming where scabs were and then there are the ever-so-attractive bald patches. But even with all of that, I find that I feel a little bit better looking in the mirror today that I have in months.

For 4 hours I got to be a comic book character, a crime fighter. And even with my costume now hanging in the closet I feel like I could kick ass and take names and not look half bad doing it.

Aftermath

2010-07-25T21:57:00.000-04:00

When you're busy fighting a disease there isn't time to really stop and process everything. You're at war. You have your full battle armor on and you are charging the enemy at top speed.

Then someone tells you that the battle is over and that you have won. You have survived lab tests, PET scans, biopsies, lymph node dissections, surgery and 24 staples being jabbed into your head and ripped out of your head and you are covered with new battle scars, both visible and invisible.

But I don't have cancer anymore. They got it all out. That should make me really happy, right? And it does. But even that doesn't change the fact that having just survived another major ordeal on the battlefield that is my health has left me flooded with all those feelings I did not have time or energy to deal with during the fight. And they are overwhelming, making me question everything, making me wonder if there will ever really be a time in my life when my body is not fighting a serious, major battle.

The past 3 years have been a nonstop fight against the MonSter. Sometimes he wins, sometimes I do. Every time he rises up to challenge me, I put on my battle armor and I fight as hard as I can. Then just when I think I may have won, he's back again. War has become my new life. Hitting the MonSter with steroids, trying this injection and that infusion and those pills, seeing this doctor and that doctor. Seeing doctors has been my full-time job for over 3 years now. If only I got paid for it. I literally schedule my entire life around my doctor visits, infusions and therapies.

As Tysabri started finally working, I began improving and went through my final semester of college without a single relapse, the longest I have ever gone without one. I finally started breathing again. I remembered what it was like to feel sort of normal. I was hopeful about my future and the possibility of doing things and not having diseases rule my life and my calendar.

Then this new opponent – Cancer - showed up and I went through the old familiar motions of pulling my armor, not yet even dusty, out of the closet and putting it on. I am now beginning to understand that it is not during a battle, but after that we finally allow ourselves to mentally process what just happened and sift through the many emotions that a crisis brings with it. And when you factor in how many life-changing diseases I have been diagnosed with in such a short amount of time, the treatments I have endured, the symptoms I have learned to cope with...well, it all has a cumulative effect on one's ability to stay constantly positive and hopeful. And I find myself wondering if the past 3 years are now indicative of what my life will be like for the next 30 years and that chases my hope even further away.

In the past 2 months I have earned the titles of College Graduate and Cancer Survivor. I am proud of both, but it all has left me feeling that melanoma has forever stained what should have been at least a brief period of satisfaction and pride. Instead I find myself feeling scared, insecure and extremely frustrated. A friend recently said to me, “Recovery is not a straight path.” I guess I am learning to walk the winding road of feeling better and then worse, of moving forwards only to move backwards and not knowing how long it will actually take to be “healed”…if that word is really even attainable.

Honestly, I’m sick of healing, of constantly finding myself in a state of recovery, if not from one disease than from another. I’m sick to death of being “sick.” I’m sick of being back here, left in the wake of some disease and seeing the damage it has done to me, my body, my loved ones and my life. I’m sick of coming out of the mud only to realize that it does not wash off as easily as I was promised and in some places it doesn’t wash off at all.

I am emotionally exhausted and not looking forward to the soul searching that will follow as I decide what comes next…of course, factoring in the limitations of my health and the fears that these many diseases have now ingrained in me. I am trying as hard as I can to embrace the meltdown, so to speak…to let go, and find whatever lessons there may be hidden within it.
I am dealing with the aftermath.

But as one of my favorite quotes says:

The distance between who you were to who you are becoming is where the dance of life really takes place. – Barbara DeAngelis

So I guess I’m dancing.

100% Cancer-Free!

2010-06-28T08:00:00.000-04:00

Finally some good news!
All 8 of the lymph nodes they biopsied came back clean and they also got clean margins from the re-excision of my tumor site. No more cancer for me!

I am one week post-op and coming along. The swelling is going down, there's some bruising, we've made it through washing the southern hemisphere of my head but the northern hemisphere still hurts too much to touch. Staples and stitches are due to come out Friday if they continue to heal well. I'm still pretty tired as my body heals and I am doing my best to take it easy and let people help me. Mostly the MonSter is playing nice, though having major surgery is something that can trigger him to rear his nasty head. I try not to think about that and just focus on resting, healing and staying inside where there is lots of A/C!!

Thank you for all the well wishes and prayers.
We appreciate them more than you know.
XOXO

and it's not even Halloween

2010-06-24T10:11:00.004-04:00

Well, I am now 48+ hours post-op and to say I have a bit of a headache is an understatement.

The surgery went really well though. They ended up taking 8 lymph nodes out of my neck, from behind and in from in front of my ears. Apparently the oncologist said it was a "lymph node wild goose chase" to find them all. I like to make people really earn their money, ya know? ;-)Results from the biopsy will be in either tomorrow or Monday.

He then cut out another 3x5cm section from my scalp which hopefully will turn out clean margins, meaning all the melanoma is out of my head. Then it was the plastic surgeon's turn to sweat and earn his money. He said he was worried about closing me, that the hole might be too big and might need a skin graft. eek!! Luckily, he is a genius and was able to do this thing called a pinwheel flap or advanced rotation flap where he makes a lot of incisions all over my head, cutting and stretching little pieces together until they finally cover the hole completely. So yay to no skin graft! Boo to major MAJOR headache. I definitely do NOT recommend scalp resonstructive surgery, so please avoid it if you can. ;-)

So they sent me home Monday night covered in gauze and compression bandages. Mom said I looked like a nun, being wrapped around my head, chin and forehead. I think "nun" was the nicest thing she could think of and I really looked more like the Mummy.

The first couple days have been rough (as all post-op days are for anyone!) but I got my bandages off yesterday and can move my jaw again and I slept in the bed last night instead of on the recliner! Yay for small victories! Everything feels really tight and swollen. My face is pretty swollen and bruised which it may be for a while. Overall though, I believe I have traded my Mummy look for that of Frankenstein. Truthfully, I have not looked at my head. I am choosing not to until it looks a bit better. With all the physical trauma who needs the extra emotional trauma of forever having those images burned onto your retinas? I sure don't. However, Chris described it a bit and it involves a bunch of staples and stitches and incisions and I am fairly certain I would give Frankenstein a run for his money.

Luckily, I am related to 2 of the best dressed women on the planet (my Mom and Grandmother) and they have loaned me a zillion fabulous scarves, which may be part of my wardrobe for a while as my head heals, and hair figures out which way it is going and the parts they shaved grow back in. Luckily they didn't have to shave too much. It could be a lot worse! I also have several new hats thanks to Grandmother, my mother-in-law Barbara and my friends Lyn & Jen. It will be a new style era of fabulous headwear for sure.

Anyhow, I wanted to put an update out for everyone to see. I am not lying when I tell people I have the best support system of anyone in the world. Thank you for all the emails to make me laugh, the sweet voicemails and awesome cards. (Once I feel a little better I will take pictures of my kitchen and post them - it's amazing to see all the cards!! I think I am single-handedly keeping Hallmark in business!) We have a few more rough days ahead as we endure the healing process, but at least we are in the healing process thank the Lord.

Will post the biopsy results as soon as I have them!
Much love.
XOXO

Father's Day

2010-06-20T09:00:00.002-04:00

In honor of the day on which we celebrate our dads, I wanted to share a little bit about mine. Well, truth be told I have 3 dads now. For the past five and a half years I have had the World's Greatest Father-in-law (you know I won the In-Law Lottery, right? Seriously.) He makes me my favorite hamburgers, chili, or chicken soup any time I ask and he has even been known to put his own life in danger, hanging off his roof just to hang my WalkMS sign at his house!

For the past 15 years I have had the immense pleasure of having a stepdad who loves me, makes me laugh and taught me everything I know about theater. Before I knew he would become family, he influenced my decision to go to Pace...which is of course where I met Chris, so in effect, my stepdad could also claim to be responsible for introducing me to my husband.

Then of course, there's my Dad. Now I know everyone will say they have a great dad and all. And I believe you. But seriously....not kidding around...my Dad is a rock star. I mean, he is actually a Rock Star. Well, by day he is a pediatrician and looks after people's babies, but by night he plays in a band called Paradocs and a few years back they invited me to come sing with them and now we have a pretty decent band and my Dad and I get to rock out together.

Suffice it to say that my Dad is 100% responsible for my musical talent.
Well, I don't know...my Mom does a pretty mean version of both "Bali Ha'i" from "South Pacific" and the "Feed the Birds" song from "Mary Poppins", so really we'll say Dad is 98% responsible. :-)

For as long as I can remember I have loved music and it has been a huge part of my life and it is my Dad who gave this gift to me. He has that musical genius ability to be able to hear a song once and then play it on guitar (I hate people who can do this and I hate he did not pass this gift along to me!) He picked out our first piano, a beautiful Schumann baby grand and we named him Oscar. After Oscar arrived, Dad showed me which note corresponded to which piano key and from there, I taught myself to play. Oscar and I became the best of friends and when my parents divorced and we were going to be spending more time at my Mom's apartment closer to Pace, Dad told me to take Oscar with me. Even though owning a baby grand had always been my father's dream, he said Oscar needed to be wherever I was because we were meant to be together and we have been ever since.

I could write about so many things, including this generous spirit that my Dad has always had. For example, how many people form a rock band and go on to play dozens of charity events raising money to fight cancer, diabetes, HIV/AIDS, MS and more?? He is that kind of doctor, too, going above and beyond for his patients. When I was a little girl, he had a patient come in with a horrible heat rash, and discovered that the single mother was having financial troubles and living in a small apartment with no A/C...in the middle of August...in Atlanta. Most doctors would have prescribed applying cool compresses and ibuprofen for pain and then sent them on their way. Not my Dad. My dad went to Home Depot, he bought an air-conditioning unit which he paid for out of his own pocket. He then drove to their 110 degree apartment and installed the unit for them. That's the kind of doctor and man my Dad is.

People say things to me about how "unlucky" I am, especially when it comes to my health. Sure, I probably have more incurable disease than most, many of which are difficult to treat, to say the least. But how can anyone be more equipped to handle them all than me, because unlike the rest of the world out there fighting diseases, I have Dr. Larry Clements on my side. To say that I am lucky to have my Dad as a father is the understatement of the century. Not only did he give us a happy, often magical childhood, but he has been my superhero physician for 30+ years, giving me advice, doing research whenever needed, calling whomever was necessary to ensure that I receive the best possible care and treatment for any/all of my illnesses.

It is no secret I am a Daddy's Girl, and while this phrase may have negative connotations for some people, if you were MY Daddy's girl, you would have nothing but positive, wonderful things to say about it, knowing that you were the luckiest girl in the whole wide world.

Happy Father's Day, Daddy!
I love you more than words can say.
XOXO
C.C.

Melanoma Melodrama

2010-06-18T16:55:00.000-04:00

My brother gave me that title for this episode of my life.

Hopefully someday soon we will all look back and laugh about the ridiculousness of the "Melanoma Melodrama."
In the meantime, my surgery is this Monday, June 21st. I will basically be at the hospital all day but I luckily don't have to spend the night. First, they will inject me with some sort of radioactive dye (between the PET scan and now this I am surely going to turn into some sort of superhero - aren't there a lot that began with exposure to radioactive material?) After that I have to sit and wait for the dye to spread from the tumor site down into my lymph nodes then they put me under, take a bunch of my little lymph nodes out, cut out a bunch more of my scalp, then they attempt to put Humpty Dumpty back together again. The plastic surgeon who is sewing me up isn't sure what methods he will have to use, as he will decide that based on how much scalp the oncologist leaves for him to work with! (gross, I know.)

Thank you for all the emails, cards, phone calls. We really appreciate it. And thank you for all the offers for food, help with chores, driving, etc - we will be taking everyone up on them once we know a bit more what we need.

Send happy thoughts my way on Monday. I go under around 2pm and the whole thing should take around 3 hours...and then we are on our way to leave the Melanoma Melodrama behind us once and for all.

Off-Roading

2010-06-04T10:30:00.000-04:00

It would be a vast understatement to say that my life is not turning out exactly as I had envisioned. It has strayed from the path.

Just when my MS starts to behave and I think I might get a short break from all the “off-roading” I find myself thrown off the path, once again covered in mud.

But how deep is this mud? Is it quicksand-mud? Or just a little bit of dirt? Can I easily walk out of it and get back to the path or will I start to sink?

It is going to take a little while to figure out how deep or how shallow this cancer-muckity-muck is. I am stuck in the mud waiting on phone calls with my PET scan results and my LDH levels or with dates that my surgery can be scheduled. Then I will wait to see how the surgery goes, how much they have to remove and how extensive the repairs will be to the tumor site, whether it will be an easy close or will require reconstructive surgery. They will take out 3 or 4 of my lymph nodes and I will wait some more in the mud for them to tell me that they showed no signs that the melanoma has spread, or they will tell me the unthinkable news that it did show up in my lymph nodes.

People come to visit me in the mud, standing cautiously at its edges. My regular doctors and nurses come by and new doctors and nurses appear to join my Care Team. Friends and family arrive, at the ready in case I start to sink and they need to reach out with branches or throw ropes.

We are waiting to see what the mud does, to see how I react to this new mud and to see how long it will take to get out of it, so I can get back to the path that I was on…the path which will inevitably have changed by the time I return to it. So I will have to go in search of it, or else find a new path altogether, which is sad, scary, exciting and infuriating all at once. I wait in the mud and it’s lonely and messy and not at all fun.

And even though there are people all around me, I am the one back in the mud…still in the mud. Alone.
Some days are easier than others.
And some hours are simply unbearable and I am certain that I cannot possibly stand one more minute living in this muck and if I don’t get out soon I am going to lose my mind.

I just want to be a normal, healthy, non-mud-covered person making my way down the yellow brick road. Is that really so much to ask?

Post-grad

2010-05-24T23:13:00.000-04:00

In case you missed the big news...I am officially a college graduate!

Saturday, May 8th was one of those perfect days. The weather cooperated, so many people got up early to see me graduate, others celebrated with me afterwards. I felt so happy, proud and loved and it truly was perfect in every way.

Though from there things began to get a little more interesting and less 'perfect.' The weekend went something like this:

Saturday: I graduate from college! Summa cum laude!! I celebrate with my family and close friends. (And thanks for all the cards you have sent!! My kitchen cabinets are completely covered. It's beautiful. I will have to post a picture!)

Sunday: Stay in my pajamas all day to rest and recover from the excitement of Saturday.

Monday: I wake up feeling good, ready to face the world as a college-grad, and then the doctor calls to inform me I have skin cancer. To be precise, I have melanoma.

I'm sorry. What?!?? Did you call the wrong patient or something? I'm MS Girl...I'm not Cancer Girl! That will require a totally different cape and costume, not to mention I don't have time or energy for all new sets of fundraisers!! (by the way, Team Wearing Red Shoes has raised over $19,500 making us the top fundraising team in the entire state of Georgia for 2010!)

Meanwhile, I am so proud of my accomplishment, of reaching this goal that has taken me over a decade and many hurdles to complete, and I just wanted to spend a day or maybe a week basking in the glory of finally becoming a college graduate. Instead I spent Monday feeling scared and crying, having miniature pity-parties saying, "Why me? Why me again?"

The good news: after they cut the melanoma out they ruled me practically stage zero - the cancer was mostly contained to the tumor site (on top of my head! like on my scalp, hiding in my hair!!) though he missed a little on the edges and has to go back and cut out more. blech. But in my doctor's opinion the chance of this melanoma having spread anywhere else in my body is less than 2%. I like those odds. I meet with the oncology surgeon June 1 and then we will schedule the rest of the cutting and a biopsy of my lymph nodes to be 100% sure I don't have mean, nasty cancer cells anywhere else. I have about 6 or so stitches in my scalp, but he pulled my hairline back together nicely so I'm not bald or anything. Though it did change my natural part a bit (you ladies understand!) so that will take some getting used to. I've been wearing a lot of scarves to cover up the stitches until they come out.

I probably sound braver than I actually am.

If I think about it all too much, I completely shut down and I don't wanna leave the house, or answer my phone or read my emails, and that's not healthy. If I have learned anything from MS it's that you need help from people to get through any major crisis, whether its physical help, emotional support or just knowing there are people there that have your back when you need them.

But I'm sad, scared and angry all at once. My post-graduation plans did not include "Get Cancer." And the fact that I do have MS just complicates matters tenfold. So now my doctors are going to have to all talk to each other and figure out what's the best plan for my current/future treatments and that scares the crap outta me too. The next couple weeks aren't going to be fun, but I really truly believe that somehow it is going to work out alright.

So I just have to move forward, one day at a time, holding my breath a little until we know for sure what all we're dealing with and what this will mean for my future. Nevertheless, MS Girl will now be taking on the world as a college grad, which only makes me that much more of a badass. :-)

XOXO

Awards Ceremony

2010-05-07T21:14:00.006-04:00

I had forgotten how at the end of the school year, particularly the end of your senior year they have Awards Day and Senior Honors Day. Well, at least Oglethorpe does and as I sat in our theater (and even watched my bff Angela win an award for being so brilliant in Sociology!) I thought about how my own college awards ceremony might go....

To the people who spent the most time and their precious fuel driving me to/from doctor appointments, so that I could save my energy for my schoolwork and classes, I give the Chaffeurs of the Year Awards to: Alice Nanda (with help from her sons Louis and Adam) and my Aunt Eileen 'Louie' Mengert.

For stocking our fridge with food when I was too sick to go grocery shopping over the past 2 years we present Shopper Extraordinaire Awards to Karen & Courtney Holder and my in-laws Barbara Faga & Paul Kulinski.

For leaving her job to pick me up at school when I found myself without a ride home (more than once!), the Search & Rescue Award goes to Beth Dieterich.

For helping me type papers when my left hand gave out on me (and learning more about Shakespeare's fools than she ever thought possible) the Helping Hands Award goes to "Lightning-Hands" Lyn Marcrum.

For their unfailing willingness to do whatever we needed whenever we needed, be it drive, cook, shop or have ginger molasses cookies on my doorstep even before the IV nurse arrived the Jacks of All Trades Award goes to Tiffany & Steven Wisener.

To the person who sadly got laid off from her job, but instead of settling in for a pity-party and Oprah-watching, called up her sister-in-law and said, "Hey, I just lost my job, so what can I do to help you? Drive? Shop? Type? Cook?" And during the toughest 6 months of my life she did all that and more. The Service Above Self Award goes to my sister-in-law Betsey Kulinski.

Within 2 hours of notifying my friends and family that I had lost the use of one arm and gained a sassy cane named Greg, this generous friend offered and spent every Friday afternoon for months doing whatever I needed help with. She typed papers, did dishes, baked cookies, made placecards, took me to Ikea and set up our entire dining room set for us. The Macguyver Service Award goes to my friend Bethany Okie.

For teaching me everything I know about theater that is worth knowing and for asking for my input and whatever expertise I might have had on his own productions. For inspiring me to go back and finish my degree so that I might someday pursue my love for educational theater, the Inspiration Award to my stepdad George Mengert.

For paying for Pace and for my first 2 years at CCM and for navigating every aspect of my medical journey with me, taking my frantic midnight phone calls, fighting for me with my insurance company and with my doctors, all so that I could stay in school and accomplish my goals: the Advocate and Support Award to my parents Larry & Sheryl Clements.

For choosing that 9am Sociology class in the fall of 2008, for driving me to countless doctor appts, sitting with me during infusions, helping type my papers, doing my dishes, folding my laundry, the list goes on. But most of all for keeping me sane with her encouraging, calming presence and always wise advice. To my 'mini-me' and partner-in-crime, the All-Around Support Award to Angela DeGroat.

She has easily driven half a million miles in order to advance my education and talents and she has worked behind the scenes for 30+ years, quietly helping me to put the pieces of my life back together every time they fell apart, so that even in the midst of great hardships I would never lose sight of who I was. When I was diagnosed with JRA at age 6, desperate to be a ballerina, she pleaded with and convinced Ruth Mitchell to allow me to keep on dancing. When CCM became too much for me and I returned home, she was the one who 'subtly' sent me the audition notice for the Atlanta Symphony Orchestra Chorus so that I would keep on singing. No matter the hurdle, she has helped me to "keep on keepin' on." The Biggest Fan & Cheerleader Award goes to my mom, Annette Mengert.

Finally, for living with a full-time college student and not strangling me every time I stressed out over an exam or was too hard on myself about a paper. For being supportive of my decision to go back to school even when it meant seeing less of me and seeing less money in our bank account. For being understanding about what a perfectionist I am and trying to get me to dial it from an 11 down to an 8. For putting all my papers and exams on the fridge no matter what the grade. For encouraging me when I was scared, and telling me time and time again how proud he was of me for making this decision and seeing it through, the Better Half Award to my husband, Chris.

All of you and so many more have made it possible for me to reach this point: hours away from being a college graduate. I couldn't have done it without you.
(And even if I could have, I wouldn't have wanted to.)

As my dear friend Dorothy says: "You're the best friends anybody ever had."

Thank you for helping me to join the graduating class of 2010!
XOXO
Caroline

Still Here

2010-04-21T22:58:00.003-04:00

No, I haven't disappeared....or rather I have, but only into the hole known as "Last Semester of My Senior Year of College." I thought your last semester was all frat parties and skipping class, alas I was wrong and in the 3 weeks before my last exam I found myself with a total of 6 papers, 4 exams and 1 oral presentation due...all within 3 weeks.

As of today I have 2 more papers, 3 more exams and the presentation between now and May 3rd...and then...I will be a college graduate!!! Only a few years ago I swore up and down I would never go back (never say never, right?) and now here I am. I even managed a 4.0 last semester with Greg in tow and only one working hand (and lots of help from my 'Helping Hands' - you know who you are!)

Alright, I only allowed myself this brief break from Paper 5 of 6 (sounds like a Star Trek character, right Dad?) and now I must return and eventually call it a night. So I am off the radar until after May 8 (Graduation Day!) and then the very next weekend is WalkMS Atlanta on May 15. If you haven't signed up already, we would love for you to join us. The more the merrier (Red Shoe World Domination!!!!)
http://nationalmssociety.org/goto/wearingredshoes

XOXO

It's the Most Wonderful Time of the Year

2010-03-14T22:41:00.004-04:00

No, I am not talking about Christmas, though Christmas-time is nice and all...I am talking about Red Shoe Season!!!! The time of year when I somehow convince all of my family and friends (and occasionally perfect strangers) to put on red shoes and raise some $$ to fight the MonSter.

Team Wearing Red Shoes is back for its 3rd year in a row and we are gonna be bigger and badder than ever (and by badder I mean more Fabulous, of course) as we take over Piedmont Park on Saturday, May 15th for WalkMS 2010.

Put on some red shoes and join us, or if you can't be with us on May 15th we hope you will support us by making a donation. Any amount is greatly appreciated!
Our team page: http://nationalmssociety.org/goto/wearingredshoes

Hope you can join us on Saturday, May 15th. It's an amazing event filled with hope for a world free of MS...not to mention 50+ pairs of red shoes!

XOXO

The Other Shoe

2010-02-12T08:50:00.002-05:00

The longer I live with the MonSter on my back, the more I am shocked, surprised, even slapped in the face to learn that everyone's case of MS is soooo different. No wonder scientists have been unable to find a cure and have trouble coming up with treatments! The darn thing looks completely different on everyone!

Plenty of us show no outward appearance of the disease, while others have quite a hard time hiding their symptoms. Some people are diagnosed and then go years before having another relapse...some MSers never have another relapse. They take their injections, and go about their life with symptoms, but no relapses, no new lesions or inflammation, no disease-progression. It is pretty awesome that drugs exist (known as Disease-Modifying-Drugs, or DMDs) that help so many people to live life as normally as possible. And it is wonderful that these drugs work and these people can go years without the stress, pain, hassle and fears that come with a new relapse. I know many of these people – doing well, clean MRIs, "stable" and I am really happy for them.

I also totally hate their guts.

Okay, hate is a strong word (thanks, Mom, for hammering that into my brain as a child). I don't hate them. I just sometimes want to punch them in the face. No! That’s not right either. It’s jealousy. Plain and simple jealousy. I want to BE these people. I want the drug that works. The one that I shoot into my leg or arm every day and the one that keeps the MonSter quiet for longer than three months at a time.

So in October, two months into my Relapse from Hell, Greg and I had become best friends, completely inseparable and I had lost 80-90% function of my left hand, not to mention 100% feeling in it, with numbness and pain elsewhere too. I was a mess. Well, it turned out my brain looked even messier than I did and my October MRI was so full of lesions and inflammation it looked like a damn LiteBrite on the films. This worried my neurologist so much he called me at home right after he read my MRI. He also told me to start considering going onto a new drug called Tysabri.

Tysabri has a love/hate relationship in the MS world. People love it because it works for a lot of people - it gives them function back. It takes pain away. It is only given once a month via IV infusion. No shots Every Day! People hate it because it comes with some risk factors. Okay, actually it’s just one major, MAJOR risk of developing a crazy rare brain infection called PML (the acronym for Progressive + 2 other words that require a medical degree just to pronounce!!). PML has been known to cause severe disability, even death. I did plenty of research on Tysabri and PML, as did my team of doctors, and the risk for developing PML is less than .05%. Plus no one has ever contracted PML in their first year on Tysabri, so first 12 months are like a free pass.

This week just finished infusion #5, so I am four months into my 12-month grace period. Greg and I "broke up" shortly before Xmas. (My family then all tells me they "never really liked him anyway!" hahaha) AND...I am typing this to you with BOTH hands. Slowly, I am playing piano again (though I had to get out my easier piano books and "reteach" Lefty how to play. It’s amazing how the brain works and that you can reconnect neural pathways that weren’t talking to one another! And my MRI done in January showed that all the inflammation I had in October was gone and I had no new activity or lesions. My brain is no longer swollen!!! Yippee!

So obviously Tysabri is working. And I am SO incredibly grateful.

I am optimistic and hopeful for the first time in a long time.

So why then is there this little voice in my head saying, "Oh puh-lease. This won't last. You won't feel good for very long. It's only a matter of time. I mean, hul-lo?? Your MS track record ain't so good, babe. Keep dreamin’ that this drug (your third in less than three years) is actually going to work. "

I hear this annoying voice and I realize that part of me is waiting for the other shoe to drop. I am not just optimistic. I am trepidatiously optimistic. (I realize that may not be a word, but I like it, so I’m keeping it).

And I find I am rather annoyed at myself for feeling this way.

Then I remember that I sort of have a right to feel this way, to some degree. I mean, in my first two years with MS, I relapsed SIX times. Which is more than three times the average for most folks with MS. I always knew I was special! Ha.

Seriously, though, relapsing has become a way of life for me:

I relapse. I let my family know. Our Moms bring food and make sure our fridge is stocked. I email our friends and by the time I am hooked up to IV steroids, Tiffany has already baked a batch of her famous ginger-molasses cookies and delivered them (or sent Steven over with them) because they knew that is the only thing we have ever found that gets rid of the awful metallic taste I get in my mouth from 3 days of Solu-Medrol. Chris works from home more to help take care of me. Angela drives me to the classes I feel up to going to. Alice, my mom and my aunt Eileen drive me to my doctor’s appointments. People come help me fold laundry or type my papers for school. When we go out in public, my friends offer me arms and hands to hold onto because they know I am unsteady. After almost three years, all of this has become almost second nature.

But in the past two months I have slowly started to feel like a real, whole person again. If you count August as my official last relapse-start-date, then this, right now, is the longest I have ever gone without a relapse. < knock wood > And so of course I am looking around for that "other shoe." It might be any day now...next week! Or it will probably be over my spring break since Chris and I are planning to go out of town. Or it will come during finals week. Any second now....BOOM! I won't be able to walk or Lefty will give out again and I'll be back to needing help tying my shoes or...or...

I could go on forever worrying about what might go wrong, where in my body it might go wrong, how much it is going to hurt and when it is going to happen. But it is completely unhelpful because Right Now I am not relapsing and my MRI was clean and my left hand is working and I don’t need my cane anymore. The pain is manageable and I don’t feel as overall terrible as I did from August through December.

Sometimes it just feels like a bad dream that I had. And I have woken up and I feel okay, and I can type again and play Oscar when I want to, and I am a Senior in my final semester about to finish my undergraduate degree! And I love my house and I am married to a wonderful man and I have the best family and friends of anyone in the whole world and Right Now I am going to appreciate my body and all the things it can do for me Today.

As much as I would LOVE to know what will happen tomorrow (and then plan accordingly for it, of course!), I just can't. No one can. I am wasting precious energy (aka Spoons) worrying about the Ifs and Whats and Whens and Hows. I am going to try as hard as I possibly can to just enjoy Today, to be present in whatever I am doing, to try not to worry so much and to hold on for dear life to my Optimism.

Meanwhile, I am going to tell the Trepidation to find somebody else's shoes to mess with. Both of MY red shoes will be staying tightly on my feet, thank you very much.

"Everything Happens For A Reason"

2009-12-02T12:45:00.000-05:00

I've always been somewhat ambivalent towards clichéd phrases. On one hand, I like them. They get across your point, without having to explain it in great detail. On the other hand, they sometimes seem very trite, because unfortunately, a vast majority of clichéd phrases are used when times are tough.

I believe in fate, yet this phrase can come across as a five letter way of telling someone that the crap they are dealing with is really part of some big master plan. But when people are dealing with crap, hearing that phrase doesn't always help them.

Fate must have known my ambivalence towards this phrase, as it has recently been throwing it in my face, and I have just had to laugh at how strangely true it has become. I'm certain that I do not yet know all of the reasons that I was given this disease, but a few have been making themselves known lately.

If you know me, you know I love quotes which also includes song lyrics and lately this song keeps swimming through my head:

Half of learning how to play
is learning what not to play.
And she's learning the spaces she leaves
have their own things to say.
And she's trying to sing just enough
so that the air around her moves.
And make music like mercy
that gives what it is
and has nothing to prove.

She crawls out on a limb
and begins to build her home.
And it's enough just to look around
to know she's not alone.

- Ani Difranco

If I was the tattooing type of person I would probably tattoo these the phrases somewhere on myself right now. They remind me that, regardless of MS, we all have to learn at some point in our lives to Slow Down. Sadly, none of us is immune to aging, and it has a funny way of creeping up on you and forcing you to take a different pace. Until the MonSter entered my life, I wa always busy - working at my regular job, teaching kids to sing and dance in my spare time, there was always a bridal shower or a baby shower to throw or attend, or a wedding to sing at, our huge family and many friends to socialize with... I was overbooked and overextended yet somehow I never minded because I had boundless energy to do the many things I loved, the many things that made me Caroline.

I've been forced to learn a life lesson, perhaps too early, but an important lesson nonetheless. Sometimes life is about learning what NOT to do, "what NOT to play"... Not about stopping, certainly not about giving up, but about "trying to sing just enough", finding the joy in doing less and yet knowing you are the same person you have always been regardless of what you don't accomplish or do accomplish.

It's why I love that phrase "crawl out on a limb" because somehow it encompasses the idea of reinventing one's self. I think there are few things more frightening than the thought of shedding the skin of who you were in order to become who you want to be. Change is really, really scary. Giving up my busy, busy life, my many activities and many of the things I love in order to accept my current limitations and to accept who I need to be right now has been both terrifying and extremely humbling. But in it I have found new things I love, different types of joy, and the unbelievable power that lies in allowing yourself to be weak, even vulnerable - both words I previously detested, but have grown to realize are actually crucial in order to grow, in order to become the the best possible version of yourself.

Having bad balance, an uncooperative and rebellious left hand, terrible brain mud, pain, spasticity, dizziness, numbness and unfathomable fatigue have all but forced me (even though I am extremely stubborn) to ask for more help with more things than I ever thought imaginable. The stubbornness, the pride-swallowing, the fear of rejection, the fear of burdening those I love have all been met with nothing but open arms and willing hands. I've discovered arms I never knew were open. I've learned that sometimes allowing yourself to be vulnerable gives other people permission to be vulnerable with you, and it is in that space that real friendship grows.

I believe now that I needed to slow down. I believe that I was meant to go back to school and earn my college degree and that fate led me to Oglethorpe and to meeting people there that have filled my soul with joy. I believe that it's on purpose I'm struggling so much right now, because it has allowed me to reconnect with old friends, forge relationships with new ones, and become closer to people I never knew how much I truly needed until now.

And I guess that's the point. It's not about what I do or don't do. It's about just being, about who I want to be, about who I am when I'm with the people I love that love me.

I'm still learning and I'm still terrified and I'm still struggling. But some days it's enough just to look around and to know that I'm not alone.

Princess Caroline Marches On

2009-09-25T23:35:00.001-04:00

it has been a pretty rough week here in the kulinski household. i have spent 4+ hours a day for the past 5 days at shepherd center receiving my ivig infusion which is our plan b attempt at ending this relapse. you usually don't see results until 5-7 days after the infusion ends, so next week will hopefully make up for this horrible week with some improvement in my symptoms. i have continued getting worse this week and it is rather scary and highly frustrating.

you may have noticed my sudden disregard for capital letters? in addition to the lower half of my body staging a coup, my left hand joined the dark side this week as well. typing on a keyboard, playing piano, and attempting to hold anything with my left hand has become nearly impossible. i still have some control over my thumb and pointer finger. the other three are living on some alien planet and refuse to do anything i tell them. talk about twilight zone! imagine if you will, writing an email and suddenly your left pinkie simply will not hit that shift key. no matter what you do, it rudely ignores you. so until further notice you may notice this absence of caps. it is going to make this semster at school rather interesting if this continues. i am a touch typer. i type well and quickly. ahem, i used to touch type. when your left hand is completely numb and 3 out of 10 finger aren't working, it severely diminishes your typing speed. i may have to start dictating emails, blog posts and schoolwork to someone willing to type for me!

don't even talk to me about how upset i am over not being able to play piano right now. i have always run to my piano when i am happy, sad, angry or scared. not being able to play right now feels like someone just went ahead and choppeed my whole arm off. i just have to believe that this will get better and whatever this is, it isn't permanent.

in the midst of such an awful week, i had a lot of cheerleaders. i don't know how people survive things like this without cheerleaders and i am lucky to have so many. by the time the week ended, the shepherd nurses were saying i had "an entourage"!! many many thanks go out to the chauffeurs and visitors who helped me pass the time while hooked up to tubes: my friend bethany spent monday morning with me, chris spent all day tuesday with me, alice (and her adorable boys, louis & adam) drove me and took me to chickfila on wed, thursday my sister-in-law betsey spent all day with me, helped me by typing while i dictated a paper outline to her, drove me to lunch and stayed and watched a movie with me. my mom was with me all day today, brought me lunch and yummy treats and made the time fly by.

if the entourage wasn't enough, my phone rang endlessly off the hook with people calling to check in, offering to help, or just leave me a nice voicemail to brighten my day: thanks barbara, dad, sheryl, van, uncle jim, beth, angela, karen, grandmother, granddaddy & george. tiffany & steven brought over goodies and kimmy brought dinner and did all my laundry for me. (it is surprising hard to fold clothes when one hand isn't working!)

i am truly blessed to have so very many people who care about me. i don't know what i did to deserve them all.

also the nurses and staff at shepherd are so incredible to me. they take such good care of me and even find ways to add fun into an otherwise dreadful experience. on wednesday, they appointed me "princess caroline" for the day and gave me a tiara to wear. i was the only patient lucky enough to be in the infusion room every single day, so it earned me that royal title!

i am relieved this week is over. i am trying to remain hopeful for the week(s) to come. i just wanna get back to school, get back to some sense of normalcy, even if my body is feeling quite far from normal. i missed the majority of my classes this week. all my professors were 100% understanding but i hate missing so much school. not only for fear of getting behind, but because school has become another happy place. when i am on campus, evwn with greg, i am just another normal student trying to get an education. i love being there. it fills my soul with joy. and i need as much joy as i can get right now!

keep your fingers crossed, say a prayer, do a dance, say a chant...whatever you think might help this medicine to work and finally end this relapse-from-hell. october is one of my favorite months and i would prefer to enjoy it relapse-free and feeling better.
XOXO

Greg

2009-09-21T16:30:00.000-04:00

I have a new man in my life.

It is likely that in the coming days (weeks? months???) if you spend any time with me, you will meet this new person. We are quickly becoming inseparable.

His name is Greg and he is in this picture: http://i.ehow.com/images/GlobalPhoto/Articles/5057171/209482-main_Full.jpg

No, it's not Omar Epps, or Dr. Chase, or even Robert Sean Leonard. And sadly, it's not Dr. House either. See that awesome cane with FLAMES on it? That's Greg. I have named him Greg because 1) I name pretty much all inanimate objects; and 2) because Dr. House's first name is Greg.

So Friday was a big day in Greg's life. He made his debut at Oglethorpe University. I had no idea what would happen, what people would do or say. Would they stare? Would they look away too quickly? Would they notice or not notice? Would I have to answer a bunch of questions and tell person after person, "I have MS." It's also a pride issue. I am former dancer that used to have a gorgeous triple pirouette and, at present, I require the use of a cane to walk to my classes without falling directly on my face. Not knowing what to expect from my fellow students and professors just adds to the potential humiliation. But here are the day's highlights:

8:45 a.m.: Arrive at school, park car. Greg and I walk slowly and carefully to the building. I realize that between holding my bag, my cup of tea and Greg holding me, I am left with no free hands to open the door. A young man comes up and opens the door for me. As he follows me up the stairs he says, "Nice cane. I like the flames." Score one for Greg.

8:50 a.m.: Arrive in my French 201 classroom. My French professor has recently been informed by me, via email, that I have MS and am currently fighting the Relapse From Hell. (And I will preface this by saying that this professor and I get along really well AND we are both extremely sarcastic!) As I enter the classroom, he sees me and starts nodding his head in approval and says, "Whassup, Cripple!" Now, I hope no one finds this too offensive, but the "cripple" found it utterly hysterical...then again both our senses of humor are a bit twisted. He, too, comments on my cane and says it is "bad-ass." Score two for Greg.

9:55 a.m.: Two more young male students pass me in the hall and say, "Nice cane. Like Dr. House," and "Sweet cane." A student who was in a class with me last semester sees me and runs over to see if I am "okay." I have to tell her I have MS, that it isn't playing nice and that if I have to use a cane that it "had better be a badass one." She responds, "Caroline, you're so awesome." Score three, four and five for Greg.

10:50 a.m.: Drive to building for next class, get the good handicap parking spot. I get close to the classroom door. A group of students is somewhat near my classroom. One of the students notices me, he stops his conversation, and without saying anything to me, politely walks over and opens my classroom door for me (I realize there is a chance he thought I was a teacher....a disabled teacher at that, and so opened he door for me out of fear/respect!); however, perhaps he just realized it would be a nice thing to do. Six points for Greg!

While all these little things might not seem like much, for a woman who prides herself on being independent and never imagined herself needing help walking at age 30, these small gestures meant the world to me. Every compliment made me feel safe and accepted when I needed it most. It was a day filled with extreme physical and emotional pain, not to mention feeling defeated and insecure and all these people at OU (most of them strangers!) made me feel that I wasn't a freak or disabled or defeated, but that I was just a girl with a kickass-looking cane.

PS - Starting an IVIG infusion today in hopes that it might get this horrible relapse under control. Will be hooked up to tubes 4 hours a day for 5 days - aren't you jealous? Haha. Cross your fingers that this works...because if it doesn't, I am going to have to start investing in more canes. And let's face it, they are really a kind of accessory, and you know I can't have canes that don't go with all my outfits!!

XOXO

Whatever gets you through the day

2009-08-23T19:03:00.001-04:00

It is not an unusual occurrence for people to ask me, "How are you feeling?" Sometimes this is merely formality, much like, "Hey, how are you?"

But people also ask because they love and care about me and are truly interested in how I am feeling that particular day. I often find myself responding with, "Hanging in there," or something with at least a slightly positive note to it.

I do this for two reasons: A) Hearing someone you love tell you that they are actually feeling quite horrible, physically and/or emotionally...well it really feels crappy to hear that, especially when that person has a chronic disease and feels crappy...well, a lot of the time. This actually ties in with B) I hate disappointing the people I love, even in the slightest bit, by acknowledging that I am not feeling well and that these various diseases are, at present, kicking my...well, you know.
And while I have no doubts that there are a great many people out there that care for me, the reality is also that people have their own crappy stuff to deal with. Life is full of horrible, messy, painful things and at any given moment people are surrounded by their own demons and their own trials to overcome.

With some diseases you hear people say, "I'm going to beat this thing!" or "I will get through this." I desperately want to be able to say, "I am going to beat this thing." I want to be strong. I want to be a fighter. But how do you "beat" something that is incurable and progressive (and that is not exactly responding as we had hoped to the treatments that we keep throwing at it)?? It is one of the frustrating things about chronic diseases. They are a marathon...a never-ending marathon with lots of really steep hills and no finish line.

Many days I feel as if I am just treading water. I try to keep my head up to avoid another relapse...and yet they still manage to find me. I swim as hard as I can to keep my corneas from drying out and inevitably end up with painful inflammation every 4-5 weeks. I balance the various physical pains alongside my sanity and I fight to hang onto hope while battling the MS-depression-demons that are often chemically altering my brain. I find myself grasping onto anything I can if I think it might help me float awhile longer.

Today I baked.
I baked cranberry scones. I baked peanut butter shortbread cookies. Then I put a pork chop with yummy sauce in the crockpot for dinner. Then I cooked some chicken so that I can chop it up and eat it in salads this week when I am too busy with schoolwork to come up with anything for lunch. If you know me (and if you are reading this, you most likely do), you know I do not consider myself a cook of any merit. I am no Martha Stewart. My friends Alice and Steve sent me an apron that has a big treble clef (a symbol used in music) and says "Treble in the kitchen." I love the musical reference, but I also love the fact that it is true! I am trouble in the kitchen! And yet today I was Martha Stewart and Paula Deen and Julia Child. I put on my "treble" apron and mixed dough and kneaded it with my hands and rolled it out and cut it into adorable shapes. And standing there with my apron on, my hands immersed in dough...well, it just felt good. It felt like playing with play-doh, getting my hands all messy, focusing on nothing except the wonderful feel of cookie dough.

Sure, I have a list of things I need to be doing, that I should be doing. But sometimes you gotta tell the list to take a rest and spend some time doing exactly what you want to do and nothing more. Maybe you need to drink tea and read a few chapters of a novel. Maybe what you need is to be a couch potato and catch up on all the things on your TiVo. Perhaps you need to hire a sitter for the kids and take yourself to see a movie. Maybe what you really need is to get out some coloring books and some crayons and spend the afternoon letting your inner child play (right, Jan?). Or maybe you need to bake lots of fattening, carb-filled goodness.

Sometimes you just gotta listen to your heart and ask it, "What would make you feel better? What do you really need today?" And then you ignore your brain telling you to do the laundry or finish that project at work or a million other things it is yelling at you to do.

In times of rough seas when your arms are tired of keeping you afloat...during those times, my motto is: Whatever gets you through the day.

XOXO

The 7 Dwarves of Solu-Medrol

2009-08-19T00:52:00.004-04:00

Day One on Solu-Medrol.
It is usually on Day Two that I say, to myself or to no one in particular, "No! I cannot take another day. I am skipping Day Three. I don't care!" I don't know, but right about now I am tempted to start yelling No! already and I still have 2 days to go. And then I remember that Days Four, Five, Six and Seven are no walk in the park either, spent still reeling from the steroid effects and then coming off being pumped full of steroids, leaving me with serious weakness, muscle cramping and more.

In its defense, I am partially blaming Solu-Medrol for the craptacular relapse symptoms I am experiencing as well. It has been 10 days and unfortunately they have grown exponentially and while the numbness and such is annoying, it is the nerve pain, arriving like an army to trample all over my body, that has me unable to sleep. Well, that and the heart pounding, elephant-sitting-on-my-chest-feeling and steroid induced restlessness. But I think its mostly the pain right now. Much akin to a blowtorch firing at various body parts for undetermined amounts of time.

So the idea is that the Solu-Medrol will make the Bad Relapse Man go away more quickly and permanently. But while I am still able to make jokes and find the humor in things today...but very soon my body will be inhabited by a series of...well, dwarves.

First the pharmaceutical info:
Oral steroids ake oral corticosteroids (ex:Prednisone or the Medrol Dose Pack) are very powerful anti-inflammatories. What's really cool is unlike certain asthma inhalers, which are steroids that go directly to decrease respiratory inflammation, the oral corticosteroids affect the whole body. They are used in all types of autoimmune and rheumatic diseases, Crohn's disease, they can help treat penumonia and skin diseases as well as some allergic reactions. When you think about it they are pretty incredible drugs. They have a price to pay, including a Very long list of short-term and long-term side effects if used on a frequent basis.
Still, they can treat diseases that nothing else out there can treat, and they can drastically improve quality of life for the patients of such diseases.

I digress from the dwarves...
(To paraphrase one of my favorite authors, Stephen White):
When someone has bad bronchitis or bad allergies or a rash they are often given oral steroids as a method of treatment. Common dosage for these oral drugs ranges from 5mg to 50mg. When an MS patient is being treated for an acute relapse, they are given 1 gram of Solu-Medrol, infused directly into their veins...for 3 days in a row. So grand total: 3 grams. Since I just passed my math class in college, I can tell you that is 20 to 200 times the normal daily amount prescribed. In fact, when I tried the high-dose oral steroids back in Nov, my doc actually had to write out "six hundred milligrams" because too many times a pharmacist has assumed the doctor didn't have his coffee that day and miswrote "600" instead of "60". The point of all this being, even 50mg of steroids makes you irritable and jumpy and nervous. 1000mg into your veins, well, you can use your imagination, because I sincerely hope you never have to experience it firsthand.

This is where the dwarves come into the picture. As all these drugs are being pumped into the MS patient's body, it quickly becomes apparent they he/she has been possessed by all 7 dwarves. Unfortunately, they are not the same 7 dwarves that you might remember from that lovely fairy tale with Snow White. Oh, no. There are some familiar faces such as Grumpy and Dopey. But there is also Angry, Bitchy and Cranky. Sad to say, Happy and Sleepy will make very few and very brief appearances over the 7 days.

If you live with a person undergoing such treatment you quickly learn that in these 7 days the patient will lose most of his/her sense of humor, ability to take anything in stride and everything you do will be wrong, irritating or downright infuriating (Sorry, Chris. You know I really REALLY love you, right??) But it's not the patient's fault! It's those damn dwarves, I tell you!!!

I would sign off saying I am heading to bed, as most normal people would do at such an hour. But I would be lying, knowing that the next few days I will be catching sleep whenever the dwarves and the steroids allow, in snippets here and there. I will make a conscious effort to channel Happy whenever possible. And I will remind myself as often as I can that This Too, Shall Pass. (Thanks always for that one, BBT). And by next week maybe I will feel normal again. Well, not Too normal. I mean, who wants to be "normal", right? ;-)

Rockin for the cure

2009-08-17T21:00:00.001-04:00

Thank you to all who were able to attend our event last Saturday and help us raise some $$ for a wonderful nonprofit organization in a tough economy. We had a great turnout and hopefully everyone had a great time. All the band members played and sang like true rock stars, my neurologist made a special guest appearance and my voice held up long enough to sing backup on five or six songs and sing lead on one.

Most importantly, we raised around $4,500. Not bad at all.
My voice is still unreliable. Still scratchy and hoarse, still having problems with volume, but I expected as much. I asked more of it than I should have right now. By the way, my neuro has referred me to the Emory Voice Clinic to be evaluated and start voice therapy with their specialists. Not only are they knowledgeable in all kinds of voice disorders, they also work with singers, which I think will be helpful since singers use their voices in different ways than non-singers. As upsetting as the voice issues are (and they are very upsetting), I have also been visited by two new symptoms that are quite puzzling.

Numbness (the "technical term" is paresthesia) is a very, very common MS symptom. Something like 90% of MSer's experience numbness at some point in their journey. When nerves are damaged, as they are in MS, it can result in numbness in your arms, legs, midsection, face or wherever it wants. And the really puzzling thing is that the numbness can occur in varying degrees. It can just be a decreased sensation where your foot feels funny, and you can't exactly feel the ground. Sort of feels like there are a bunch of pillows attached to your feet. Or numbness can mean total numbness, very similar to how it feels when your arm or leg or foot falls asleep. That numb, tingly, pins-and-needles feeling.

By last Sunday morning, I was numb from my hips all the way down through my toes. By that evening, my entire abdomen and most of my back had joined the party, so I was basically numb from the chest down. In addition, I am experiencing something called Lhermitte's Sign. Something akin to sticking your finger in an electrical outlet, I would imagine. It isn't painful, per se, just extremely uncomfortable when it happens. And it is happening every time I bend my neck forward even the slightest bit.

To say that all this feels bizarre is quite the understatement. I talked to my nurses twice last week and we are "watching-and-waiting" to see if this is a pseudo-exacerbation (i.e. brought on by an infection, stress, fatigue) rather than a true relapse. To be on the safe side, I booked an appointment with the nurse practitioner.

The whole thing terrifies me. I don't know that I can emotionally handle another relapse right now. I really, really need to make it longer than four months without going into Relapse-Land. I am exhausted with the physical and emotional turmoil of being an "unstable" MSer. It is frustrating to feel that you have so little control, except for the option of cutting out all fun activities and avoiding all stress (good or bad) in hopes of staying "stable."

So in theory, I could stop participating in anything that might be stressful to my body, including singing with my band, helping my stepdad/stepsister with their shows, volunteering for and raising $$ for the NMSS, going out to dinner with friends, going to school, doing anything that involves being outside in the summer...the list could go on. Unfortunately, that's just not my style and I have been fighting it tooth and nail for two-plus years. For a former social butterfly whose social/work/volunteer/event calendar was always maxed out, it is devastating to feel I have to say no to so many things I love in order to "maintain" my health. Which is comical, because what is it I am trying to maintain? Maintain this instability? Regardless of what I do/don't do I seem to be facing relapses every three to four months.

If I hadn't sung a few songs with my band on Saturday, would I be able to feel my body right now? Or would it have happened anyway? I am sorry if I sound angry, but it's mostly because I AM angry! I just had a clean MRI. Shouldn't that buy me at least six months of no relapses and no crazy things like my entire body going numb?? I am really trying not to let it all get me down, but it's difficult sometimes. Like many things in life, there is no black and white with MS. It's a lot of gray and you just gotta make the best decisions you can and hope for the best.

To look on the bright side:
1) I can't feel my injection needles pierce my skin right now, which is very nice.
2) The anti-acid reflux diet has gotten me down to the same size I was my senior year in high school. So even though I hate this stupid GERD diet, it got me back into my skinny jeans...and then back out of my skinny jeans because they got too big.
3) Hmm. I don't have a 3 yet. I will keep working on one...

Until I can get more info, I am trying to lay low, gearing up for classes to start back on the 24th. I am trying to avoid the heat and I am being super careful when I walk because you never realize how much you rely on feeling the ground until you can't feel it at all.

And since I can't feel much of anything below my chest, several times a day I have to look down to make sure I am actually wearing pants. I mean, I haven't yet forgotten to put on pants, but when you can't actually feel the pants on your body, it's always best to double-check these things. :-) C'mon. That was funny, right?
Even on really bad days, ya gotta still find the humor in things, ya know?

PS- As this article went to print, the common relapse-partner-in-crime Nerve Pain has arrived on the scene and the author has just returned from her appt at Shepherd where all parties have agreed that 3 days of IV Solu-Medrol would be the wisest choice at this time. Infusion should begin in the next 2 days, followed by 3 days of sleeplessness, irritability and serious carb craving. This will then be followed by 3-4 days of weakness, more irritability, continued carb cravings and a small pity party. Happy thoughts, smiles, sympathy and carb-related foods are all welcome at any time. :-)

XOXO

2009-08-03T23:21:00.004-04:00

Don't forget this Saturday, August 8th

Paradocs will be rockin' for the cure

at Cowboys in Kennesaw

all proceeds to benefit the National MS Society

Whether or not my voice will hold up through a whole show remains to be seen, but no matter. I will be there rockin for a good cause...so you should come rock with us, too! Talk about an economy-friendly show - only $10 buys you a whole night of entertainment AND its tax-deductible! :-) Hope to see you there. XOXO

Birthday

2009-07-19T09:27:00.000-04:00

Today is my 30th birthday, which I find completely strange. I do not feel 30. Actually, some days I feel far far older than 30 (MS has an uncanny way of making you feel about 85 some days!) but usually I still think I am in my early 20s or something. Funny how that happens, the whole aging thing. hehe.

I did receive a really good early birthday present last week. I had my MRI last Tuesday. I have been on Copaxone for 6 months now, so we looked into the old noggin to see how it was working and as of right now there are no new lesions and no active inflammation. So it would seem the Copaxone is doing its job.

While I am much relieved to have a good MRI, I would be lying if I didn't say I was also wary. It has been such a brutal rollar coaster for the past 2+ years that I hesitate to get my hopes up only to have them dashed again.

I have had a relapse pretty much every 4 months without fail. It has been 3 months since my last episode and I am truly holding my breath and I probably will be until well into the fall. I am desperate to be able to say I have made it 6 months without a relapse - what a milestone it would be. And yet there are people that goes years without one. I am so jealous of those MSers that I cannot see straight. I feel guilty that I am not rejoicing more over a good MRI, but I have learned that a clean MRI doesn't always correlate to a stable disease. Certainly, it is far better than the alternative. I think I just need time to prove to me that I, too, can be stable for at least half a year. And then slowly I will rejoice little by little as this medicine proves to me that it can fight off this disease properly.

Nevertheless, and in spite of my fear and wariness, as far as 30th birthday presents go...a clean MRI is a pretty good one.

Symptoms vs Side Effects

2009-07-08T22:35:00.000-04:00

One of the many annoying things about any chronic illness is that you never know if a new "symptom" is really a symptom or if it’s a side effect of one of the many medicines you take to manage your "symptoms."

Example 1: I take Lyrica twice a day to help with the nerve pain I get in my legs. While it manages my pain well most of the time, it also can make me quite dizzy. At times, it feels as if it could even be vertigo, which is one of my common relapse-approaching symptoms. Or maybe it’s just the Lyrica? How do you know?

Example 2: The new arrival of chronic hoarseness. Could be a symptom of the reflux? Could be a symptom of the MS? Could be a side effect from Copaxone? Jury's still out on this one.

Example 3: The dirty word: Depression. It’s everywhere, right? Half the country is on some sort of anti-depressant. There are an abundance of commercials telling you that "depression hurts" and their medicine can help. Well, it is a known fact that "depression" is one of the top symptoms of MSers everywhere. However, is it a symptom of the MS itself? Or is it because many MSers are on one of the disease-modifying drugs and these DMDs are notorious for causing depression? Is the suicide rate so high in the MS community because having a degenerative disease really sucks or is it because we are chemically imbalanced by the drugs that are supposed to be slowing the disease progression? Jury is still out on this one, too.

A couple of weeks ago I felt myself begin circling the drain, so to speak. I wasn't myself. I was crying a lot. A LOT. And no, I am not pregnant. I was starting to feel helpless, hopeless and utterly exhausted with all this medical drama. I hit the proverbial wall, emotionally speaking.

I had hoped it would go away as quickly as it appeared, but no such luck. This was way different than the appearance of my occasional alter-ego, Copaxone Caroline. If it was her, she wasn't leaving. She was settling right on in for the long haul it seemed. And it had me feeling scared. Actually terrified. I didn't want to be this person – crying, anti-social, feeling desperate and hopeless and that I couldn't handle anything more without breaking apart.

I took all this to my doctors and they told me it could be just the Copaxone causing the severe change. It could be a combination of things. It could be the Copaxone plus the latest issue with my vocal cords has just really gotten me down. Whatever it is, it has been debilitating and exhausting and I hate it. It is SO not me. But I seem to have no choice except to picture myself on a surfboard riding the waves of depression until the sea is calm again. And I have to try and believe that it will be calm again and that this storm is not everlasting.

It is a good lesson for anything. No matter what kind of storm you are in, you have to believe that eventually it WILL end. Even when you can't see the sun you have to know it is there, just waiting for its chance to peek through the clouds and fill the land with warmth and happiness again. I am having a real hard time with this right now, and I’m certain I am not the only person who has ever felt this way at one time or another.

There is a song I heard for the first time in a vocal production class when I was at CCM. It was sung by my amazing classmate (who later became one of my amazing roommates). I still get chills when I think about Mary belting out these words:

When you see the storm is comin', see the lightning part the skies,
It's too late to run, there's terror in your eyes.
What you do then is remember this old thing you heard me say:
It's the storm, not you, that's bound to blow away.
Hold on, hold on to someone standing by.
Hold on, don't even ask how long or why,
Child, hold on to what you know is true.
Hold on 'til you get through...

So I am holding on, knowing that I will get through this, too.

And I am also trying to ask for help when I need it. It can be hard enough to ask for help when you can't see to drive or you can't tie your shoes (See my previous post on that here: Help is a 4 Letter Word). But somehow it is even harder when what you need is emotional support. There isn't any tangible action that can be done. Nevertheless, it is important, especially when battling some uber-depression, to ask for help, so that people know you just need them to be a little more "there" for you than usual. It is really hard to do, but I am really trying to let people know little-by-little (look! I am even sort of sharing now, right?) that I do need a little extra in the way of shoulders, cheerleaders, MS-haters and ears lately.

Everybody needs help sometimes, whether its a symptom or a side effect or just the repercussions of the glorious, yet often infuriating thing called Life.

Even darkness must pass

2009-06-27T11:41:00.002-04:00

The battle between darkness and hope...summed up perfectly by Samwise Gamgee:

It's all wrong...we shouldn't even be here.
But we are.

It's like in the great stories, Mr. Frodo, the ones that really matter. Full of darkness and danger they were. And sometimes you didn't want to know the end because how could the end be happy? How could the world go back to the way it was when so much bad happens?

But in the end, it's only a passing thing...even darkness must pass.
A new day will come. And when the sun shines it will shine out the clearer.
Those are the stories that stay with you.

But I think, Mr. Frodo, I do understand.
I know now folks in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding onto something...

That there's some good in this world, Mr. Frodo, and it's worth fighting for.

GERD Your Loins

2009-06-26T22:05:00.000-04:00

A couple of weeks ago I was trying to avoid doing math homework and instead watched "The Devil Wears Prada" on TV. In the first few minutes of the movie we see the über-intense character of Miranda Priestley (Meryl Streep) make her entrance into the Runway office as Stanley Tucci tells the office, "Alright everyone, gird your loins!" The effect is not only comical, but also frightening as everyone prepares for the intimidating editor.

Yes, this movie is totally fun and totally frivolous. But ever since I watched it, I have had that phrase stuck in my head. Not only does it crack me up, but I am finding it more and more pertinent.

Let's be honest. The past three years have been (pretty much) nonstop medical drama in my world. It started when I found a lump in my breast in '06 (later removed and deemed benign). I fainted, fell on my face and knocked out my tooth in '06 (a root canal and crown later, I’m much better). This was shortly followed by my MS diagnosis in '07 (with four nasty relapses to follow). My eyes stopped producing tears and I was told I have "possible Sjogren's syndrome" in '08. And two weeks ago (after many months of chronic hoarseness), I was delivered the news that I have GastroEsophageal Reflux Disease.

I have battled acid reflux on and off for years and always managed it fairly well, but for four to five months now my hoarseness has been getting worse and worse – as are the feelings and pain that go along with bad reflux. It is not an uncommon disease, really. Some people experience it intermittently, others more chronically. The scary thing is that if it goes untreated for too long you can end up with permanent damage to your esophagus and/or vocal cords (not something a singer ever wants to hear).

Last week my GI doctor did an upper endoscopy, where they send a camera into your esophagus/stomach, and confirmed I have really bad reflux. Apparently, I am "too young" to have it as bad as I do. My response is always the same: Aren't I too young to have most of the crap I have? Diseases are not age-discriminating.

As I came out of anesthesia he says, "We need to hit this hard and hit it fast," a.k.a. do everything possible to get this settled down so my esophagus and vocal cords can start healing.
We are trying a new medicine and I have all these diet restrictions, too. I have had no caffeine for two weeks and after the sixth day my caffeine-withdrawal headache finally ended. I cannot have spicy foods, tomatoes or tomato sauces, or garlic or onions. No citrus fruits, no fried foods or super fatty foods, no alcohol, and no chocolate, among other things. Also, I am supposed to eat smaller portions, not letting myself get too full, which can also be a reflux trigger.

Sadly, after two weeks of new meds/new diet, I have had worsening of my hoarseness. I went to the ENT today and he sent another camera down my throat (actually through my nose – Ouch!) to look at my cords. He said they were surprisingly un-swollen and not red at all. This is good. He said that sometimes other stomach enzymes pop up and mess with your cords, even when you aren’t making crazy amounts of acid. He then showed me a screen shot of my cords as I was attempting to sing a lovely E with a camera down my throat, and my right vocal cord was all the way at center attempting to make contact with lefty, but lefty wasn’t cooperating and was lagging behind. He said this was not normal. It could be some tiny cyst or something hiding out on the left cord, or it could be “neurological” (I felt as if I was totally on House, the TV show). It was as if my cords were out of sync with one another and not communicating, and when your cords don’t come together, you certainly would wind up with an unclear vocal sound. (15+ years of private vocal lessons taught me at least that much!)

So now I have to call my neurologist (in case it’s a new MS symptom), call my rheumatologist (because it could also be throat dryness associated with Sjogren’s that is causing all of this), keep my follow-up with the GI Doc (in case it is reflux-related) and look into meeting with a speech therapist (in case none of the above come up with a solution, we’ll start working on ways to get my cords to work together again). In the meantime I am really just hoping it goes away magically on its own, but I’m having a hard time thinking that will ever happen with any of my wacky nutjob symptoms.

More than anything, I really truly hate the feeling of dread that I find myself fighting as I think, "What next?" With three years of medical drama after drama after drama, it is difficult not to see a pattern here...not only in my MS relapses, but in the seemingly never-ending new symptoms accompanied by some new diagnosis.

Should I be starting a betting pool for what will appear in the next 6 months? And can I put in a vote for something like an ingrown toenail or a mild case of hives or something? God, how horribly cynical, yet slightly funny.

I find myself "girding my loins" for what will come next. It is a truly awful feeling, and I don't yet know how to manage it. They say that fear is a great motivator and so I am hoping that my fear of my unpredictable medical future can help motivate me in some sort of positive way.
And seriously. This thing has just got to turn around because I talk too damn much to not have my voice operating at 100%.

(But in the meantime I am supposed to be on “vocal rest” as much as possible right now to give my cords the best chance possible to heal, so know that my phone time is limited at present! And with my email time limited due to all my eye issues, I am quickly running out of ways to communicate! Snail mail? Carrier pigeon?? Smoke signals???)

As promised...

2009-05-31T23:22:00.000-04:00

As most of you know by now, I have trouble with my eyes. After 2+ years I still have constant double vision, which is sometimes corrected by prism glasses and/or by closing one eye. Sometimes not. I also now have this severe dry eye thing (cause still unknown, but my docs are now referring to me as "Possible Sjogren's Syndrome" which cracks me up. I mean, can I also be a "Possible Rock Star"? or "Possible Queen of the Universe"? I mean, really aren't I a "Possible" anything-I-want-to be??? haha. Certainly I would choose something better than "Possible Sjogren's". I digress....). So the dry eyes are so bad that my corneas have become involved and I have to have them checked alot for signs of scarring, blah blah. So when your eyes are severely dry they hurt alot and can cause blurred vision to boot.

By about 8pm on any given day I have a lot of trouble seeing. This completely clashes with the fact that, much like my dad and my brother Van, I have always been a night owl. I love night time. I am most often hit with the urge to write after 10pm.

The point (long-winded, mind you) is that I often end up writing blog posts at 11PM with my eyes basically closed, preserving moisture and not being distracted by two of everything on the screen. Fortunately I touch type fairly well. Maybe 80% accuracy or so. But being the perfectionist I am, I prefer 100% when it comes to spelling and grammar! So I have wonderful friends that proof-read for me and correct my typos, so I can better spend my limited eye power on things like, driving to the grocery store and dong my math homework! :-)

One of my "editors" is my dear friend Jen (who many years ago also taught me the power of shift+F7, to which I credit the majority of my A papers in college this past year!). Jen recently edited a post for me and along with her edit, she commented that what my blog needed was some pictures! So last week I took a few around the house of places I escape to when I need zen! Sorry, none of me yet, but maybe I will work up to that. :-)

In my "office" hanging above the window...

the 3 words that get me through good and bad days!

This is Oscar.

We got him and named him when I was 12 years old.

He has been with me ever since, even when I could only afford a tiny apartment, there would be a couch, a bed and Oscar! I still play as much as my hands and eyes will allow and it is truly one of the things that fills my soul with joy! Note that even Oscar has been decorated. Nothing in my house is safe from red shoes!!!

A shot from my office.

I am not obsessed or anything, right?

Standing in the doorway of my office.
My awesome new TV (thanks Chris!), plus several gorgeous Oz posters I have been given over the years (thank you Chris, Betsey and Angela!)

I will try to make more an effort to put fun pics up now and then. Thanks Jen for helping make my blog more colorful with your great ideas! (and sorry I didn't let you proof this one...I wanted you to be surprised!)

XOXO

World MS Day

2009-05-27T00:05:00.000-04:00

Today, May 27, 2009 is World MS Day!

Betcha didn't know that...that is probably because it is the first one!
A wonderful group of people all around the world got together and decided to form a global group to help raise awareness about MS.

So help us support the first annual World MS Day by registering yourself on the really cool World MS Map as a "friend of person with MS" or "family member of person with MS". It takes about 30 seconds and you will instantly show up on the map! (You can already see me in Atlanta, GA!) Go to:
http://www.worldmsday.org/
Click on Register if you would like to add yourself to the map!

I only wish our map icons were little red shoes so I could truly visualize red shoes taking over the world!!!!

Finding your zen

2009-05-21T23:17:00.000-04:00

I believe my nurse practitioner said it best when she told me,
"Chronic pain is a real doozy."

I don't know that I ever gave chronic pain much thought. Sure, when I heard someone was in pain and that pain never really went away, my heart went out to them. Maybe I even wondered how they did it, how they managed it all. I felt sympathy for them. Sympathy is nice and all, and often all we are capable of. Being able to feel true empathy for someone is quite different and I now feel empathetic to those people that live every day managing some sort of chronic pain.

You don't realize just how much pain stresses your body physically, emotionally, mentally. It can raise blood pressure (which it did to me during my worst relapse last November) and it can cause other sorts of crazy things to happen. Nerve pain can really affect sleep, too, and as all new parents know, if anything can make you feel crazy fast, it is sleep deprivation!

In addition, nerve pain is another "real doozy" as it rarely responds to pain meds (like codeine, percocet, etc). Nerve pain just keeps right on going, no matter what you throw at it. For some people drugs like Neurontin and Lyrica can ease the pain a bit. For others you might as well be throwing water balloons at a forest fire.

Between the herniated disc, the MS and the Keratoconjunctivitis sicca (fancy word for severe dry eye, so dry it also affects your corneas), there is a lot of pain on any given day. I have tried alternative treatments as well as medicine (I prefer Lyrica, which takes the edge off the nerve pain). Biofeedback has been surprisingly helpful. I was skeptical at first and then saw myself hooked up to monitors and literally watched my blood pressure and heart rate slow down, less stressed simply because I was breathing correctly, slowly - the same type of breathing you use as a singer! What an amazing thing! It is a great tool in my arsenal of tools to deal with symptoms and pain.

I have also been doing physical therapy for my disc problem and since then am having far less pain in my left arm. What a difference it makes to not have pain 24/7 and instead have it come in waves throughout the day. It gives you a chance to catch your breath at least!

I think when you have something like pain you can't control with medication, you have to sort of approach it mind over matter. I mean, what choice do you have? You have to find your state of zen. Make peace with the pain. Because being angry at it just raises your blood pressure and makes the pain worse.

In the meantime, I am trying to find my zen, my peace with it all. Peace in living with chronic pain and with a chronic disease that causes horrible relapses with little or no warning. I try and find peace in this crazy economy where instead of once being terrified of bugs, my worst fear is now losing my health insurance. I try to be zen when my eyes are so dry and painful that all I can do is lie with them closed, listening to the television, or to books on CD. I try and find peace when Copaxone Caroline visits, ruining my usual upbeat mood, causing me to feel depressed and hopeless, only to disappear as quickly as she came, leaving me feeling normal and hopeful again. Medicines are crazy things, huh?

Take a moment and find your zen. Close your eyes during your stressful day and take 5 slow, deep breaths. As lame as it sounds it really does help! Or maybe your zen involves shutting the office door for five minutes to call your mom. Moms always have a way of making you feel at least a bit better, don't they? Whatever your zen is, wherever you find your peace, remember it so you can go back and "visit" it whenever you need to.

Personally, I like the deep breathing to manage really intense pain; I often treat Copaxone-induced depression with a movie ticket and big bag of popcorn. Escapism! And when all else fails, I go into my office upstairs (who am I kidding? it isn't an office - it is totally a "craft room") and I work on my scrapbooks, or handmade cards for people's birthdays or I watch a movie on my TV that Chris so graciously bought and installed for me. And slowly, the zen comes. And life is good again.

Even if you don’t have a chronic disease or chronic pain, you gotta take time to find your zen…especially in these times which are tough on everyone. If nothing else, just remember to breathe!

Seriously...WOW

2009-05-08T10:01:00.001-04:00

I am sorry this particular post is so late, but just had to take a moment to share...not only was Team Wearing Red Shoes the largest team in the Marietta Walk this year, with 57 members, but we were also this year's top fundraisers as well raising $13,491!!

Thank you ,Thank you, Thank you to all of our walkers, our wonderful supporters and donors.

I hope that we will only grow and grow each year with red shoes taking over the Marietta Square...then the state of Georgia...the entire country....maybe even the world!!!

This past Sunday was my 2 year dx anniversary, a day which I wish I could forget, but unfortunately I am very good with dates. It is a hard day for me, and filled with many emotions. Chris and I had a quiet day together, going out to lunch and going shopping and other small things to distract me from being bummed out.

There are so many wonderful days throughout the year that are worth celebrating: people's birthdays and anniversarys, holidays spent with family and friends. The anniversary of a diagnosis of an incurable disease is slightly less worth celebrating. It is more of a "this is the day your life as you knew it changed forever" and while I know that MS is just another card in my deck now, it has a way of finding its way to the top of that deck more often than I would like! The MonSter is such an attention-stealing drama queen!!!

So I have lived with the MonSter in my house and in my life for two years, and while I have had more relapses than I or my doctors would like to see, I also have not had any significant disability progression, i.e. I am at the same level of basic functioning that I was 2 years ago. And I am grateful for that, I really truly am.

It helped alot that the walk was so close to this icky day, and the memories of what an awesome day it was were still fresh in my mind. I mean, not only did we take over Marietta in our red, raise a TON of $$$ and have the largest team on the square, but I got to sing the national anthem!!!! That has been on my "lifelong to-do list" since I was around 10 or 11 years old! What a fabulous way to check that one off the list.

Thank you again everyone for making WalkMS 2009 such a wonderful, memorable day!
Lots and lots of love,
XOXO

My Name is Mud

2009-04-22T14:07:00.003-04:00

While the term "brain fog" is recognized as a synonym for "cognitive dysfunction" by Wikipedia, I have decided that I much prefer " brain mud".

Fog is light and airy, it whooshes in quietly and of course puts a nice cloud cover over everything so you can't see what is five feet in front of you. You grasp for thoughts and pluck them out of the fog, you walk through its cold dampness feeling pretty out of sorts and perhaps a tad lonely.

Brain mud...now that's a horse of a different color!
Mud is messy and dirty and sloshes around and gets all over your boots and your jeans and even splatters up on your face if you are trying to walk too forecefully through it. Before you can pluck a thought out of mud you have to dig your hands down into the squishy, gooey muddy mess. It is disruptive and infuriating and did I mention, messy??

I am definitely in the midst of a big ole brain mud puddle!

Though I am glad I chose to do 3 days of IV Solu-Medrol (it has helped a lot with my burning leg pain) the vertigo is still hanging on and the brain mud is making me crazy! It doens't help mattters that I have 2 big papers due and a final exam all in the next 10 days before the semester ends. Having a registered "disability" means I can take incompletes if I have to, but that really is a last resort. I don't want incompletes hanging over my head and stressing me out further!

I have been trying to write one of my papers today while I am home resting and I find myself with the complete inability to get thoughts out of my head onto paper and extreme difficulty concentrating. It frustrates me to no end! I know its only temporary and with each day the inflammation in my brain will lessen and I will start to feel better and think clearly again
Just ike coming out of a fog...
Or rolling out of the mud...and hopefully into a "hot and steamy, absolutely dreamy, finally out of trouble, bubble bath" :-)

Chariots & Roid Rage!

2009-04-19T22:00:00.000-04:00

In comedy, timing is everything. When I used to perform and act in shows I was always known for having superb comic timing. It would seem that my timing is still in tact, though at the moment it feels more like dark comedy!

I have been battling vertigo and "brain mud" for well over a week, and last Wednesday afternoon both my thighs lit on fire from the inside out and wouldn't give up. After living through 4 MS relapses in my (almost) 2 years with the disease I am starting to learn its patterns and signals and sadly, each and every relapse has involved vertigo, brain mud and burning nerve pain in my legs (among other things, too sometimes!) So I went to Shepherd Center Friday morning (thanks Alice for chauffeuring me!!!!) and Dr. Loring agreed it looked and sounded like a bit of a flare-up and suggested hitting getting 3 days of IV steroids infusion going ASAP.

The timing could not be worse (like I said dark comedy. Very dark comedy).

WalkMS was yesterday and our team of over 50 people raised over $12,700 and as their team captain I was supposed to be leading them to victory at the finish line and celebrating alongside them as they have all supported me in my journey with the MonSter.

Instead I "walked" by riding in a wheelchair borrowed from Kennestone hospital (it was red though! Way to go Dad for finding a red chair!!!) I can still walk, no need for alarm, but my doctors strongly advised against walking 3 miles while in the midst of this relapse. I am weak and dizzy and it was not wise to try and push my body past its limits right now. So I rode in style, pushed along by my family and friends in a beautifully decorated red chair, while wearing my red shirt and fabulous red shoes. It was certainly not how I envisioned WalkMS 2009, but after I swallowed my pride about not being able to "walk" in the Walk, it turned out to be a simply beautiful day with my very favorite people in the world.

So I just finished the final day of my IV infusion and am fighting a bit of the steroid blues: irritable, heart racing out of my chest, violent mood swings, and the lovely metallic taste in my mouth. Ah, the joys of Solu-Medrol. haha! Tomorrow the crash will begin and by Wed the light at the end of tunnel will appear. I am still too dizzy to drive (or walk through my house without falling into walls!) but I have lots of friends who have offered their chaffeur services until I feel myself again.

Thanks for all the positive thoughts and a special thank you to the amazing Team Wearing Red Shoes...Top fundraisers for WalkMS Marietta two years running!!!! I love you all so very much!
XOXO

Wearing Red Shoes

2009-04-14T09:51:00.001-04:00

This is a picture of me, in October 1985 spraying my very first pair of red shoes so I could dress up as Dorothy that Halloween. Dad's legs are supervising in the background as I do some sort of modified dance move, spraying and glittering my shoes.

It is so amazing to me that so many people have joined the red-shoe-wearing/red-shoe-spraying movement to join for WalkMS 2009. And those that aren't able to join us have donated to support us and it means more to me than I could ever say. (I am still working through my thank you notes and emails! Yours is coming!!)

I think I say it alot, but no one fights a disease like MS alone. It takes a village of support, a network of family and friends to cheer you on with their encouraging words when you feel down, their chaffeuring skills when you can't see, their baked goods as you undergo treatment, their patient ears when you need to talk...most importantly, you need to be surrounded with people who make you laugh, and who love you just as you are...flawed, imperfect and in constant battle with a MonSter who never plays by the rules. I am so lucky, so unbelievably blessed to have so many people in my life who provide so much love and laughter and support for me every single day.

Its not too late to join our party this Saturday, April 18th:
http://main.nationalmssociety.org/goto/wearingredshoes

C'mon...you know you wanna put on those red shoes!
(I am seriously thinking about trademarking this phrase!! haha)
XOXO

Lemons

2009-04-03T08:56:00.000-04:00

There are so many cliché phrases about fruit.
“Life is not a bowl full of cherries.” (my Mom’s favorite when I was a kid)
“ Nobody likes a sour grape.”
“An apple a day keeps the doctor away.”
“When life hands you lemons, make lemonade.”

I think the problem is that I much prefer to cherries to lemonade.
In fact, I so destested lemons as a young child that my parents used to hand me lemon wedges and encourage me to eat them just so they could laugh hysterically at the awful, puckered faces I would make (true story!) I then went on to name lemons “yucks” and called them that for years.
“Lemon” is also the word we use for a car that is sort of broken from the start…a dud. Most states have Lemon Laws, in order to protect buyers against unknowingly purchasing a lemon.

Unfortunately, I think I may have gotten a “lemon” body.

At every turn it is failing me. In fact, it actually began failing me at age 6 when I became very sick with Juvenile Rheumatoid Arthritis (now I think they call it Still’s Disease, but same thing). At first no one could figure out what was wrong. They thought leukemia, and a host of other things. I ran high fevers constantly, my lymph nodes and spleen were swollen, as were most of my joints. I was in a lot of pain most days, which is partly why I believe my pain tolerance is higher than most. It feels as though I have spent much of my life managing some sort of physical pain.

So I am stuck behind the wheel of this “lemon” with no way to trade it in! It is completely unfair and some days all I want to do is scream and throw things. Most days I remind myself that others out there are living in “lemon” bodies too, and I am not alone in that. We just have to try and the make the best of what we have, to “keep on keepin’ on” as my Granddaddy says, and to still find ways to live out dreams, even if they are a little soured.

Copaxone Caroline

2009-04-01T09:00:00.000-04:00

It is about 6 weeks into Copaxone, my new Wonder Drug, designed to slow the progression of MS, minimize relapses and new lesions forming. I suppose only time will tell if it is doing its job. I go back for an MRI in July and I can only hope that between now and then I remain relapse-free and that my brain and spine remain lesion-free!

It is so funny to me how differently each drug can affect you. With Betaseron I got horrible injection site reactions, ran fevers, felt like I had the flu, was achy, got chills, sometimes nausea. But the symptom most warned about with that drug is depression. Apparently with interferon injections you can get Really depressed Really fast and most doctors recommend at least a low-dose anti-depressant preventatively so you never reach that icky low drug-induced depression.

Copaxone is advertised as causing no flu-like symptoms and being less likely to cause depression in patients. Though people warned me the injection site reactions could be far worse (especially since it is every day, and not every other day) So leave it to me to have the opposite reaction that is "normal" or "usual".

What is it Luisa from "The Fantasticks" says...."Please, God, please. Don't let me be normal!"

The first few weeks on the drug the fatigue was awful. I would wake up, my mind was awake, but my body wouldn't do anything I told it do! Wearing a fur coat in a swimming pool filled with molasses kind of fatigue. While that has gotten much better, I have had more headaches over the past 6 weeks than I have had in the past 6 years. The injection sites are getting better as I get the hang of how and where this drug likes to be injected. Annoyingly, every injection burns like a bee sting for about 15-20 minutes. Ice packs seem to help ease the sting a bit, as does distracting myself by talking to a friend for those 20 minutes (thanks, Kimmy!)

But the thing that has bothered me most, that I have found most disconcerting is the appearance of a new unwelcomed persona: Copaxone Caroline. I never know when she will show up and take over my body/mind/soul. She appears for mere minutes, or sometimes stays a few hours. But then she always departs, leaving no trace of her visit behind. One minute, I am watching a fun show on tivo, folding laundry, humming a tune, looking forward to dinner with a friend, then...

BAM! Copaxone Caroline shows up: This tv show is horrible (why do I even watch this show?), the laundry looks awful (I will need to refold everything so it looks better), I hate singing, I hate all music, in fact and there is no way I am up for having dinner with anyone. I don't even want to get dressed. Ever. Again. I will live in pajamas from now on. And not answer my phone, or the door. Why am I even going to college? I am almost 30 years old! That is too old for college...I will never finish. I should quit. I made lunch but now have no appetite to eat anything. Wait. Why am I crying??!?? Nothing happened to make me cry!! This is insane. I give up. It is all just too much. I am running away...to somewhere. I don't know where. But far away.

Then, BAM!
Huh. That was really weird and awful. The laundry is fine, this tv show is funny, I can't wait to see my friend tonight, I am looking forward to class tomorrow, and what was that great song I was humming?

If it sounds like some sort of split personality disorder, well...trust me. It feels like it, too!
At first I thought I was really becoming depressed, maybe my body was trying to tell me to deal with some subconcsious issues I had been supporessing. But try as I might, I couldn't figure out anything and these moments kept cropping up. Not every day, but certainly a few times a week. Very scary. Very disconcerting.

In the end (and with the wise opinions of my medical care team) I realized these moments of despair are totally drug-induced. My body is reacting to the massive amounts of medicine I keep injecting into it every day and right now, it isn't too happy about the whole ordeal. With each visit from Copaxone Caroline I just have to say to myself,

"Just ride it out. You are ok. You are fine. This will pass shortly and you will feel normal again"

Or as normal as I ever feel! :-)

Montel Williams was on Oprah recently talking about his MS (thanks Jennifer for the heads up!) He talked a lot about the depression caused by these medications and also the depressiong that the disease itself can cause. He, too, experiences moments of sheer despair, crying out of nowhere and other bizarre emotional responses. And he was able to find the humor in it, as so many of the MS community does every single day.

So, a warning to my loved ones out there: I sincerely hope you do not receive a visit from Copaxone Caroline, but should she appear, bawling for no reason, seeming apathetic or irritable, just know that her visits never last long (thank God!) and when I return to take my rightful place in this body, I will then spend the next 10 minutes making jokes at my expense and poking fun at how ridiculolus Copaxone Caroline is. And my dear friends who know me best, will laugh right along with me, perhaps poking fun at her as well. Because they will know, as I now fully appreciate, that I am NOT nor never will be someone who gives up. I am more of a fight-to-the-death kinda girl. Kicking butt, taking names, and laughing alot along the way.

But your labs look great!

2009-03-31T10:39:00.000-04:00

A very quick update from the world of Caroline's bloodwork:

I had my appt with the rheumatologist to get the results of the 8 vials I recently gave them and according to my doctor, my "labs look great".

In doctor-speak, this means "Obviously there is something wrong with you because your eyes stopped producing tears, but your labwork says you are 100% fine, so we don't know why your eyes just gave up".

So while I currently cannot be given a clinical diagnosis of Sjogren's Syndrome or some other autoimmune disease, according to my doctor it is a watch-and-wait thing now. She says there is a distinct possibility that it will turn out I do have Sjogren's or even Lupus, but as of today neither can be confirmed. Follow up labs in 6 months.

In the meantime I am trying these new things called Lacriserts which look like little grains of rice, that you insert carefully below each eyeball and then they release gel-like substance up onto your eyeball throughout the day. It sure beats having to put eyedrops in every 20 minutes, but they are not easy to put in (they are TINY and if you drop them on the floor you can forget finding them again, plus they are no longer sterile! and the double vision makes putting mascara on hard enough, much less putting tiny rice things into my eyes!!) and they only last 6-8 hours so I usually need 2 sets.

I am trying to be patient but some days I just want to rip my eyes out of my head they hurt so badly from the dryness. Usually I reach the point at night where it hurts too much to keep them open and Chris and I "watch" TV together and he tells me the funny visual things I am missing while I listen.

The good news is that it is the end of March...and my last MS relapse was in mid-late November, which means I have gone 4 months without a relapse! Which after 2008 is a new record! haha
I just know the Copaxone is going to be the right choice for me. Feeling hopeful that it is working makes having to do injections every day a little easier :-) Though I did tell my doctor I was giving myself my birthday off from injections: my present to myself! Everyone needs at least one "mental health" day a year.

This saturday was our second annual Shoe Spraying Party for Team Wearing Red Shoes. I am so excited. We have a really big team this year and I know it is going to be a great walk with so many of my favorite people there and wearing their red shoes! It is not too late to join us:
http://main.nationalmssociety.org/goto/carolinekulinski

Cmon, you know you wanna put on those red shoes ;-)

Awareness Fact #7

2009-03-07T09:00:00.002-05:00

On this final day of MS Awareness Week I leave with you this...
There are currently several FDA approved treatments for slowing the progression of MS and the National MS Society recommends treatment with one of these disease modifying drugs as soon as possible after being diagnosed in order to help maintain a FABulous quality of life for as long as possible!

I am so blessed to have a wonderful team of doctors and nurses that help me navigate my treatment options in order to manage my MS and help me to do the things I want to do.

Though there is no cure...yet...I have hope that one day we will know a world free of MS. And on that day I will invite you all to a Wearing Red Shoes Dance of Joy event, in which we will...well, wear our red shoes, and dance for joy that the MonSter has been eliminated forever!!!

Awareness Fact #6

2009-03-06T09:00:00.003-05:00

Multiple sclerosis causes a wide range of symptoms. That being said, some of the more common ones are extreme/abnormal fatigue, numbness/tingling, balance/coordination problems, muscle weakness, nerve pain, spasticity, tremors, blurred/double vision and vertigo.

Heat, infection and stress can worsen symptoms and/or trigger relapses.
So I try and stay cool and avoid illness as much as anyone can...still working on that last one. If anyone out there has a cure for stress, I am all ears!!! :-)

Awareness Fact #5

2009-03-05T09:00:00.001-05:00

The way MS does its damge is by attacking myelin.
Myelin is the insulation that surrounds nerve fibers in the brain and spinal cord.

Think of myelin like the insulation around an electrical wire...and MS just bites into it at various places, causing the electrical/nerve signals to get all messed up.

This is also why people with MS are so sensitive to heat. If the body's electrical system gets too hot, it short circuits causing wacky things to happen! Luckily, once the core body temperature returns to normal, usually the system "reboots" and you are back to normal. :-)

Awareness Fact #4

2009-03-04T09:00:00.001-05:00

Important numbers:
Over 400,000 American have MS.
Over 2.5 million people worldwide have MS.
The majority of people are diagnosed between ages 20-50, though the diagnosis age range is actually 2-75!

More events to come!

2009-03-03T17:07:00.003-05:00

Just a quick reminder
Tomorrow night, 6-9pm
"Shop for the Cure"
at Cherry Pie: www.cherrypieatl.com

Also, I just got word of a wonderful event being hosted by my new friends Zach & Melissa Polun at the Sweetwater Brewing Company
Saturday, March 28th, 1-4pm.
For details: http://mssocietysweetwater.blogspot.com/

What creative fundraising ideas people come up with!
Beer tasting for MS? Sounds good to me!

Awareness Fact #3

2009-03-03T09:00:00.001-05:00

The progression, severity and symptoms of multiple sclerosis are unpredictable and vary from person to person. Sometimes symptoms will appear, then disappear completely. Other times they come and go more regularly. Chris and I have learned an important lesson from this: Always get travel insurance when planning fabulous vacations!! :-)

Awareness Fact #2

2009-03-02T09:00:00.001-05:00

Multiple sclerosis is not contagious and it is not fatal.

(This means you can hug and kiss on me as often as you like!)

MS Awareness Week!

2009-03-01T17:37:00.004-05:00

Today marks the beginning of MS Awareness Week.
I am fighting a nasty cold but nevertheless will try my best to post wacky facts about MS every day this week.
Other exciting events happening this week:

"Shop for the Cure"
Wednesday, March 4th
6:00-9:00pm
Cherry Pie Boutique
Come shop with us at my favorite store in Vinings and 20% of the evenings proceeds will go to the NMSS in honor of MS Awareness Week!

Yoga in the Park
Saturday, March 7th
11:00am
Piedmont Park
Yoga for all levels in beautiful Piedmont Park (hopefully with less snow by then!)
http://www.nationalmssociety.org/chapters/GAA/index.aspx

If you have an orange MS bracelet, wear it all week long, so if people ask what it's for you can tell them about MS, about your fabulous friend Caroline and invite them join/donate to WalkMS 2009! If you don't have one, let me know and I will make sure you get one!

Fact #1: Multiple sclerosis is believed to be an autoimmune diease, though this has yet to be 100% proven by science. Like most autoimmune diseases, MS affects twice as many women as it does men! We women get all the fun... :-)

Play

2009-02-26T22:57:00.000-05:00

This past Sunday was "Oscar Night". If you missed it, it was actually a pretty good show this year. Hugh Jackman was an incredible host - he is a true triple threat and was singing and dancing and making jokes. Plus he is just darn cute. But I digress...

Every year when the Oscar's come on I get a little nostalgic. When I was growing up my Mom and Dad would host an Oscar Night party every year. While the "grown-ups" ate dinner and watched the show in the den, my brother Van and I would watch from up in the playroom. There was always a ton of yummy food, people cheering and booing over who won and who lost, and Van and I were allowed to stay up way past our bedtime!

As you can probably guess, movies were a big part of my life growing up. We loved watching movies, in the theaters, at home. I can remember seeing the first Batman movie (circa 1989) with Mom, Dad & Van on the weekend that it opened, while we were down at the beach. My Dad often took me on "Daddy-Daughter Dates" and we would have lunch and see a movie together. A couple of weeks ago we even had a mini-date of Chick-fil-a and "Journey to the Center of the Earth" on his new blu-ray player and in 3D! (Btw, if you have double vision, you must place 3D glasses over your prism glasses in order for 3D to work properly! haha)

Okay, Caroline. I get it. You like movies.
But that's not the real point here. Keep reading...

It's about escapism. Getting away from it all.
Turning your mind off for a little while.
Maybe your thing isn't movies. Maybe it's Rock Band or the Wii, or tennis or golf. Maybe it's scrapbooking or chasing your kids around in the yard.
It's about playing.

The National MS Society puts out a wonderful magazine called "Momentum". The latest issue just arrived last week and this excerpt caught my eye:
"We defined play as something that could make us feel happy, joyful or cheerful. Some members said that play made them feel more alive; others said it helped them take pleasure in small things. I forget that I have MS when I play." -Nancy Chamberlayne

But this isn't just about MSers! We all need to play more. Because Nancy is right- playing makes you forget about the things that are stressing you out the most. It gives you a mental health break, gives your mind a mini-vacation from all those things that keep you up at night.

In the recent past I have found myself using a phrase that came out of nowhere. I think it originally started with babies: Being able to give Paul & Karen's new baby Courtney her bath "filled my soul with joy". Going to visit Jennifer, Vince, Lola & Lucy "fills my soul with joy". I love playing with babies. I also really enjoy sitting in my office (aka Craft Room) and making homemade cards for people's birthdays. I still love going to the movies. I like to color with crayons. I find baking very relaxing. I love to dance, even though it is harder to do nowadays. I love watching my Pace and HSPS kids perform. I enjoy being a college student again and learning new things. The list goes on...

The older we get the more important it is to make time to play.
I am lucky to have so many things and people that fill my soul with joy and even have the power to make me forget I have MS for a little while. :-)

I'm. So. Tired.

2009-02-08T20:12:00.002-05:00

Fatigue is one those symptoms that is completely intangible. You can't always recognize it, but MSers always feel it. Of course everyone experiences fatigue. No one is immune to it and as we age we all fatigue more easily (one of the many joys of getting older!)

MS fatigue is hard to explain and like nothing I have ever known. I am slowly starting to learn my own signals and symptoms of it, though I am told that it can differ greatly from MSer to MSer. Have you ever had the nightmare where you are trying to run and simply can't? Or you can run but only in a weird slow motion-molasses type of run? MS fatigue is kinda like that - Dr. Thrower describes it as "trying to walk through a swimming pool while wearing a fur coat"!! ha!

You want to walk at a normal pace, and yet your legs will just not cooperate. You will them to move and its as if the signal just takes longer to get to them and finally they cooperate, but only in Molasses-Mode. Other things stop cooperating too. Your feet don't pick up off the ground as easily (the clinical name is "Foot-Drop"), your hands become weak and you find yourself dropping things more often, even having trouble grasping things like pens and your toothbrush. I always know I am drastically out of "spoons" when can't hold my housekey well enough to maneuver it into the front door lock and it takes me more than 3 tries to get the stupid key in and then turn it! I have learned to laugh at myself when this happens and then I head straight into the house and straight into my pajamas for bed!

MS fatigue doesn't play by the rules. Sometimes a night's sleep returns you back to "normal". Sometimes you wake up after a perfect night's sleep and feel like your body has been pumped full of lead. This morning was one of those mornings. My sweet husband finally convinced me to take some provigil and that seemed to help a little. We think that my body is just adjusting to the new medication and its hard work getting used to it.

Oh! I started Copaxone last Tuesday. I have high hopes that it will work for me, though getting my body used to a new drug is a slow, painful process. Hopefully 7-10 days I will be as good as new. It is still a sub-cutaneous injection (aka little needle) but I have to do it every day. Also its crucial to rotate injection sites and I have to have 7 sites that I use. So I assigned each site a different day of the week: right on Wed, left leg on Mon, etc. I even made up a mini-dance routine so that I would remember which day goes with which body part! hahaha!
Maybe if I get inspired I will put my Copaxone dance on youtube!!

Ramblings

2009-01-25T22:05:00.004-05:00

I am always so excited when people comment on my blog, or email me to say they were reading it. It is nice to know that what I write is at least somewhat interesting to others. Many days it is just an outlet for me, a place to put my thoughts and the bazillion emotions churning around. Other days it is a quick way to keep my loved ones informed. I am always amazed when people I have never even met comment on my blog, to offer good wishes and advice. People are so awesome. So it would seem, as indicated by the kind comment on my last blog (and by further internet research) that Sjogren's is still somewhat on the table. I guess a negative blood test is a good sign, but does not necessarily mean I am off the hook. Obviously I will keeping my previously scheduled appt with the rheumatologist!

Also, I went and got another opinion on the bulging disc in my neck and the orthopaedist agreed that it was pretty bad. He could even see that it was herniated on an xray. Yuck! I started physical therapy last week and I am really Really hoping that the disc is pushing on my nerves. (Who ever thought Anyone would hope for such an awful thing?!?!) In my defense, and to let you know that I am NOT a masochist, if the disc is responsible for my arm nerve pain then that means there is actually SOMEthing I can do about it, rather than curse the MonSter for a symptom I can do nothing to cure. My left arm has by far been my worst nerve pain, so what a complete JOY it would be to kick that left arm pain to the curb.
Only time will tell as I diligently try whatever my physical therapist tells me to try and wait patiently to see what happens.

In other news, I am once again duking it out with the insurance company over paying for medication. Dr. Thrower wants to switch me to Copaxone, another injectable drug designed to slow down the MonSter. Good news is that it is said to have less side effects and I won't wake up in the middle of the night with fever and chills as often; Bad news is that it is an injection every day which is a bummer. I try not and be too whiny about it, because one of my favorite uncles has to give himself at least 5 shots every day to manage his own monstrous disease, so when I feel a pity party coming on I remember him and if he can do 5 I can do 1.

Oh and my insurance is Totally going to pay for this drug, they just like to make me jump through hoops of fire while twirling batons and singing the national anthem just to prove I Really want this medicine. So when I have jumped high enough for their liking, they will pony up. :-)

In the meantime, we are gearing up for an exciting year: WalkMS 2009 is officially on the calendar and Team Wearing Red Shoes is up and running! 6 team members and counting...but my goal is to have 30 people on our team this year, so links will be below- sign up!
Also, we have two big weddings this year and lots of wedding-related fun events. Our dear friends Steven & Tiffany are saying their "I Do's" in April, then Chris' brother Matthew is marrying our soon-to-be-sister-in-law Katie in May. I love it when people I love get married.

I am sorry this blog lacked a solid theme. I usually try and be more cohesive in my thoughts and writing, but tonight my brain is just rambling on and now so is my blog. Time to go do PT exercises before bed and enjoy my "nights off" from shots while I still can! :-)

See below for link to my WalkMS page. From there you can join the team and/or donate. We know its a rough year out there, so all we ask is enough to keep the MS research alive and well.
Every little bit counts!
http://main.nationalmssociety.org/goto/carolinekulinski

Good, Bad, Good, Huh?!?

2009-01-17T22:27:00.004-05:00

First of all, people never cease to amaze me.
Here I am going through all this craziness and as I share my thoughts with the world, not only do my family and dear friends cheer me on with emails, phone calls and comments but then perfect strangers also send me their thoughts and well wishes! People are truly amazing.

Chris and I woke up early on Wed morning for MRI Take Two! I woke up at 6am, took my doctor-prescribed Ativan at 7am and by 8am I was telling the technician that I was planning to sing show tunes while I was inside the MRI machine! (The tech informed me it would be better if I did NOT sing show tunes. We finally compromised on me singing them in my head instead of outloud). No, I am not making this up! As I changed into my attractive cotton gown for the machine, Chris apologized to the tech informing him I was "high" on Ativan. The tech just laughed and said I wasn't the first! hehe. Frankly, I could care less if I made a complete fool of myself because I made it through the MRI! Yippee!!!

An hour and a half later (now slightly coming down off the Ativan!) we met with Dr. Thrower for the results of last week's blood work and of the MRI:

The Good: I have no new lesions in my brain! Yippee!!! Clean brain!!!!

The Bad: I do have a new inflamed (aka "active") lesion on my spinal cord. A lot of people don't realize that MS can cause lesions on both the brain and/or the spinal cord. And this week we discovered my first cord lesion. SO annoying and unpredictable this disease. This little bugger is in my neck area and it may or may not be responsible for the nerve pain in my left shoulder/arm that has been visiting ever since the summer. Sooo, that means the medicine I have been on isn't doing what we hoped it would (it is supposed to keep new lesions away, in theory). Sooo, I am in the process of switching from Betaseron to Copaxone. Hopefully by next week Aetna will have approved this new med and I will be on my way to switching over. I am nervous about it and a little scared, but optimistic that it will work better for me and jive with my body chemistry and keep me lesion-free for years to come!

The Good: My blood work came back normal, meaning the Sjogren's antibodies were negative, meaning as far as we can tell I do not have Sjogren's Syndrome. Yay! Still NO idea why my eyes gave up producing tears, but I am hopeful that this is all just a weird reaction to too many steroids and they will come back in time.

The Huh?!?: The MRI also showed that I have a bulging (herniated) disc in my neck between C6 and C7. Wh-what?!?! How random is that? I have NO idea how this happened, as it did not show on my MRI a year ago. Even more interesting is that there is a chance that this disc could be responsible for the nerve pain in my left arm! In the fight of the century, my spine lesion and my herniated disc are dueling it out for the title of "Nerve Pain Causer"! Dr. Thrower has recommended I start PT ASAP to try and get the disc to chill out. Stay tuned to see who wins this duel and claims the title!

Needless to say it has been an exhausting week. I had a good bawling cry Wed night about the whole thing and since then I am coming to terms with all the news and working my way through the 5 million emotions that come with it!

Again, thank you so much for all the love and support. It means so much and on the bad days is what keeps me going. I have hope for the new year. I truly believe 2009 is going to be a good one. I turn 30 this year. I am starting on a new medicine which I just know is going to help and make me feel better and keep the MonSter quiet. The economy is crap, true, but it is often in tough times when people pull together, lean on each other and do amazing things for one another.

No One is Perfect...Least of all Me

2009-01-05T09:45:00.001-05:00

Well I arrived at Shepherd Center at the bright and early hour of 7:15AM. For those that know me, I am NOT a morning person, but I was in a good mood, ready to get the show on the road.

I signed in, joked around with the MRI technician. He found my vein quickly and easily, shot me full of the special gadolinium dye material. He gave me a blanket, secured my head so I wouldn't move during the scan and into the tube I went...

And then I don't know exactly what happened.

I have had my fair share of MRIs. I am good at them. I close my eyes as soon as I lay down so that I don't see the cage over my head or the tiny metal tube I am then shoved into. I keep my eyes closed the whole time, picturing myself laying on a picnic blanket on a lovely autumn afternoon at the Garden Hills duckpond. And then I sing showtunes silently in my head while the machine whirls away around me.

But this morning at 8am the machine started and I felt like I was going to pass out. My body got extremely hot, my eyes were burning (maybe I didn't moisten them enough before I closed them??) I completely panicked. I squeezed the button to let the tech know something was wrong. He came running and pulled me out of the machine. We got to talking trying to figure it out. Did the dye infusion make me feel woozy for a minute? Why did I feel so hot when the machine started, but as soon as I was out felt fine? I mentioned my new eye plugs. The tech asked was there any metal in them? I didn't think so. But of course he insisted we check to be sure. A couple of phone calls later, my eye doctor is certain the plugs are completely plastic, which means I just had an old-fashioned, run-of-the-mill panic attack.

I am so mad and disappointed in myself that I could just scream. I begged the tech for a do-over, but of course now he has to have formal written documentation from my eye doctor stating there is no metal in the plugs. No one wants to get sued, and I can respect that. I thanked the tech for his time and apologized for the 50th time and he smiled and said not to worry and we would reschedule soon. I called my eye doctor back asking them to draw up a document and fax it to Shepherd as soon as posisble. Meanwhile I am simply sick to my stomach over acting like a complete baby and freaking out for no reason whatsoever. I promptly walked outside sat on the nearest bench outside the newly reonvated Shepherd Center and then burst into tears.

But I have learned several important lessons this morning:

1. No one is strong all the time. Everyone is allowed and needs to panic and be scared and then cry over acting like an idiot. If nothing else it is humbling.

2. Having "punctul plugs" put into your eyes does NOT mean you will not be able to cry tears. You can still cry. Lots!

3. Stress comes out in surprising ways. You might think you are handling things perfectly well and NOT scared about possibly having Sjogren's Syndrome and NOT completely frustrated over your eyes hurting all the time on top of not being able to see straight and THEN you panic during a routine MRI and you realize you weren't handling things all that well after all, you were merely suppressing it all.

So you work through the emotions like you went through the boxes of Xmas decorations you pulled from the attic last month, looking at each one and remembering it, laughing, smiling, crying, or whatever else you need to do to process it all. Then you wrap them each back up, gingerly, carefully, put them back into their box, into the attic...and you hope and pray that the ceiling doesn't suddenly decide to cave in and drop the box of emotions right on top of your head!

I still get to see Dr. Thrower or Tracy today. So I will get some nice face time to ask questions, etc. I am grateful for that. And hopefully by this afternoon i will be able to laugh at myself as I tell them I panicked in the MRI for no particular reason. And we will reschedule soon, maybe next week if they have something. And I will try not to be so hard on myself and rather listen to my body, which obviously was trying to tell me something this morning.

Lastly, I hope I have not disappointed all of you whom I love and admire. I know we were looking forward to these results and what they would tell us. I am sorry we will have to wait a bit longer. I have always struggled with the idea of perfection, of things being "perfect" and with wanting to achieve some sort of perfection myself. I was a straight A student most of my life (did I mention I now have a 4.0 at Oglethorpe?) and have always beat myself up when I feel I didn't do as well as I should have at something.

Well I can safely say that today, i got a "C", maybe even a "D" at "Passing the MRI with Flying Colors". In fact, I totally failed!!! I pretty much got an "F". And I am still me and I am okay and I will laugh about it and laugh at myself and in the grand scheme of things it is not a big deal.
I am not perfect.
No one is perfect.
And how boring life would be if we were.

Happy New Year!

2009-01-01T22:42:00.001-05:00

Wishing everyone a new year filled with laughter and love, two of my very favorite things!
I am still struggling with my eyes and they are so dry right now (they are much worse at night sometimes) that I am having a hard time keeping them open very long so this is short! But had to send happy 2009 wishes out into the great beyond. It is also my Christopher's 31st birthday. He is currently playing with his Rock Band drumset and new video game.
Boys are never too old for new toys!

Heading to another eye doctor tomorrow for a second opinion on Sahara Eyes. Thanks for the awesome advice and comments to help me everyone! I am also trying to go see a rheumatologist asap to see if this really is Sjogren's or not. Then Monday I am having my MRI of the old brain to see why it keeps causing relapses all the darn time! Busy busy next few days! Will write more soon to keep the updates coming.
But before I go, I have two bits of info to share:
1. Did you know that the Pope, as in The POPE, wears red shoes!?!?! I just found this out today and am thrilled. He obviously is a supporter of finding the cure!!!
2. I will start the new year with this quote. I LOVE quotes. And it applies no matter what your situation is:
"Be of good cheer. Do not think of today's failure, but of the success that may come tomorrow. You have set yourself a difficult task, but you will succeed if you persevere; and you will find a joy in overcoming obstacles." - Helen Keller

May we all find the joy in overcoming our own obstacles.
Happy New Year.
XOXO

Old Sahara Eyes

2008-12-22T18:42:00.007-05:00

Do you ever feel like you are part of a weird science experiment? I mean, Life does wacky things for sure, but our bodies are unbelievable organisms that are often even wackier.

As if MS isn't weird enough all by itself, I now seem to be experiencing strange, new symptoms courtesy of either my ever-bizarre body or else the lingering side effects of the Massive amounts of steroids I have recently consumed.

So to update I finished my round of Solu-medrol, 3 days worth, and a lot of my symptoms have started to slowly subside. Others are still lingering, but I am hopeful they will move along shortly. However, I seem to have accumulated a few new symptoms, notably my severe Sahara Eyes. I have heard the term "dry eyes" before. I have experienced dry eyes before, usually during allergy season, or perhaps after a night of heavy drinking...I mean, I have Heard that people experience dry eyes after heavy drinking...I wouldn't know personally about such things ;-) Anyway, we are talking Severe dry eyes. I felt as if my eyes suddenly up and decided not to produce tears. At all. Nothing. Nada. No watering when I yawned or even when I held them open to try and force them to water. Dry as, well, the Sahara desert!

This new fun started last Wednesday, so today the Ophthamologist was able to fit me in for an eye exam. Turns out I wasn't crazy. After a really weird test where they put a special piece of paper in your eye for 5 minutes to see how many tears you produce in that amount of time, the verdict: 0 Tears Produced. Seriously?!?! My eyes are actually producing NO water/tears whatsoever?? Yep, you heard right.

Zero Tears.

Oh Good Gracious.

At some point, all you can do is laugh. Or I guess you can cry. In fact, I probably Should cry. It would put some water in my stupid Sahara eyes!!!

This could all just be a side effect of the steroids I have come off of. OR it could be a side effect of any one of the 5 Million medications I am on. OR it could be some disease called Sjogren's Syndrome which is totally random plus I don't have time for any more diseases right now, thanks. So no one is exactly sure why my eyes up and decided to stop producing water, but the fact is I have got to get some moisture back in there. Turns out it can be dangerous to let severely dry eyes go without treatment. You can end up with scarred corneas or infections or some other awfulness. I have been dropping OTC (over the counter) drops in there 3-4 times an hour just to function. Otherwise I can barely keep them open for very long. But dropping eyedrops that often is really Really annoying, plus not really practical. I started a steroid eyedrop (which seems to make no sense if steroids caused this, but apparently I am wrong?). Then my doctor wants me to start using Restasis, a prescription eye drop designed to prompt the eyes to start making tears again. The bad news is that it can take a while to really start working. So in the meantime I am the Eyedropper Queen.

It is so hard to process all this new information and make the best decisions about what to do next. Every doctor has a different opinion and they are just opinions. it is my body and ultimately I have to decide what i want to do and how to deal with its many MANY quirks and shortcomings. I don't yet know if there are any downsides to Restasis, but i know that i don't want to take any more medications than I have to because they ALL come with their own host of side effects. So I rest my eyes alot and keep them closed. I put drops in, or that gel substance that feels like someone rubbed vaseline all over your eyeball. totally gross, but it actually feels pretty nice on a poor zero-tears dry eye. :-)

Oh it's a mess. But what are you gonna do?

As for me I'm gonna put on some red shoes and do my best to enjoy Christmas with my family, Old Sahara Eyes and all. :-)

Uninvited guests

2008-12-08T11:50:00.003-05:00

Chris and I went to Shepherd Center on Friday. The ROCK STAR Tracy Walker was able to see me and she was equally unhappy that the oral steroids haven't done diddly-squat. She was also pretty unhappy that this is my third round of steroids this year. Soooo,

Short Term Plan: get a round of IV-steroids going asap. waiting on nurses to schedule me and get on over here and hook me up!

Long Term Plan: go back to Shepherd on Jan. 5th for an MRI to see what the heck is happening in my crazy brain and then reevaluate whether or not to change my maintenance (magical) injectable drugs. Perhaps the one I am one isn't jiving with my body chemistry as well as it should. Luckily there are still 3 more I can try!

The MonSter is just being extremely stubborn this go-round. Apparently it is trying to get invited to Christmas dinner or something but that is NOT going to happen because I am licking this thing before the holidays so I can actually enjoy them! I already spent Thanksgiving weekend balled up on the couch, and I ain't losing another holiday, so I will gladly let nurses stick needles in my veins for another few days if it will make the MonSter pack up its bags and move out!

Don't you just hate uninvited holiday guests??

Oh! and one last favor while I am thinking about it. After Round Two of steroids this week my body is going to be pretty immune-compromised. Not Bubble Girl compromised or anything, but more suppressed than normal. So I ask that you remember me cautiously especially if you have been sick. My body won't be able to fight off much in the way of colds and flu, etc. So no hugs and kisses if you have been coughing and sneezing! We can do air kisses from across the room. And I will try and be extra good about washing my hands and keeping the Purell close by! Thanks and will post again soon...

Relapse-Land

2008-12-04T18:00:00.001-05:00

This Relapse has settled in and gotten far too comfortable, to the point where I seem to be living in some strange twilight-zone-universe...

In this backwards sci-fi dimension nothing is as it seems. A stunning blonde beauty who "looks so good" is actually struggling just to stand in place while her legs wobble on top of numb feet with occasional vertigo to boot. One minute she feels very little pain, feels peaceful; the next minute she is writhing in pain that appeared out of nowhere that then disappears just as suddenly without explanation. In this strange universe, day and night do not exist. Fatigue sets in out of nowhere at lunchtime causing immense drowsiness.

Times, days, all blurred together. Did she eat breakfast? Lunch? She can't remember! The brain fog is unbelievably bad. Like swimming through molasses just to get a thought out and form it into a sentence. Her body's electrical system is on the fritz and constantly short circuiting causing strange muscle spasms, tremors, ringing ears, buzzing legs and other bizarreness. At times it feels like her entire body is shaking. Or maybe she is just really cold.She thinks her dad called. Was that today? Yesterday? Did she remember to call him back?? Damn you brain fog!!

Cabin fever sets in, she is dying to get out, and then she is too weak to walk out to the car. Back to the couch. Is there actually anything left on Tivo? One minute she is starving, the next too queasy to eat and no appetite for anything. And her sassy blonde locks are falling out by the handfuls again, courtesy of the massive amounts of steroids she has just consumed. Perhaps she should buy a wig in every color and wear them to suit her mood. Today sultry brunette! Tomorrow fiesty redhead!

Just spoke with my team at Shepherd Center to get their opinion on why, after all those steroids, I am feeling slightly worse, rather than better. They have advised me to come on in asap to talk it over and possibly send me in the good ole MRI machine. So trying to get an appt either tomorrow or Monday.

Sigh. I keep telling myself that this Twilight Zone I am living in is a temporary state of being and it will end.

I have to be patient and be brave.

And remember to laugh at myself.

And find my Happy Place when it is a really Bad Day.

And let friends and family help me do those things.

This too, shall pass.

XOXO

Help is a 4 letter word!

2008-12-01T15:30:00.003-05:00

It seems this "episode" has really knocked me on my...well...you know. I guess trying to go to my classes and trying to help put on a show is more taxing to my body than I was willing to admit and now I am still paying the price for it 2 weeks later. It is so hard to know what the limits are, but I am learning.

Having this disease has been an unbelievable lesson in humility. I have had to accept that there are going to be a great many things I cannot do along the way. It becomes a sort of internal struggle with my pride. It is quite surreal at times. I was so weak at points over the past week that I had trouble doing the simplest things, like tying my shoes or picking up my pills out of the pillbox or giving myself my shot. And I have to fight the urge to make excuses for myself...to somehow justify in my own mind why I need help with these things.

But it doesn't matter Why.

What matters is that I did need help.

Chris is so utterly amazing with me when these things happen. I am so stubborn and so independent that I will sit and struggle with shoelaces when my hands are obviously not working at that particular moment and I curse the shoes and curse my hands and there stands my husband nearby, watching and waiting. And I look up at him and curse my hands and shoes again. And he waits.

And then if I am really being stubborn he will calmly say,

"Caroline, is there something you would like to ask?"

And I breathe. And I tell that bothersome thing known as Pride to be quiet and I say,

"Honey, can you please help me tie this shoelace?"

and 5 seconds later we are good to go.

Obviously this does not happen every day. The past week has been exceptionally bad and I have needed more help with simple things than usual. But even if I am having a Great day/week/month the lesson is one that applies, regardless of whether a person is disabled or not:

People need help sometimes. And to get help, you have to ask for it.

Sure, sometimes you get really lucky and someone anticipates and offers help or that one special friend reads your mind and does the thing she knows you need most. But for the most part you gotta Ask for what you want or need.

That is so easy to say, and SO much harder to actually do. It takes a lot of pride-swallowing, humility and acceptance of your faults and shortcomings, be they physical, emotional or otherwise. But when you are brave enough to ask for help something amazing happens. People say yes, and they are in fact, honored that you asked. And then something even stranger happens. These little things add up and they bring you closer to people and you find yourself having deeper more meaningful relationships with those you love. And while having a day when you can't drive or can't tie your own shoelaces really sucks...knowing that there are people out there that love you enough to do those things for you...well, that's really pretty awesome. :-)

XOXO

Thankful

2008-11-27T00:03:00.001-05:00

On this thanksgiving I wanted to share just a few of the many things that I am truly thankful for:

I am thankful for my truly amazing husband.

I am thankful for my all six of my parents, my one awesome brother, my grandparents, my stepsisters, stepbrothers, brothers-and-sisters-in-law, aunts, uncles, cousins, nieces and nephews who truly light up my life every day.

I am thankful for our beautiful home that we live in.

I am thankful that we always have enough food on our table.

I am thankful we have clothes on our backs.

I am thankful that we both have cars to drive that work and are 100% paid for.

I am thankful we have steady income right now.

I am thankful to be able to be back in college, at age 29, with the hopes of one day finally becoming a college graduate!

I am thankful for red shoes, which even on my worst days, make me feel beautiful and powerful.

I am thankful that my hands still work most of the time so that I can play Oscar, my piano.

I am thankful for the days when I see well enough to drive.

I am thankful for the team of doctors and nurses at Shepherd Spinal Center and other places, including my dad, who all help to take such good care of me year-round.

I am thankful to have so many dear friends who cheer me on, love me and make me laugh always.

So I put it to, fabulous readers: What are you thankful for this year? Feel free to share one favorite thing or more than one.

Leave a comment and tell me what you're grateful for!

Finally, I am so thankful for the people who visit my blog to check in on me.

People email me or come up to me and tell me that I inspire them, but hearing that my small journey on this earth can do that for even one person means more than you will ever know. It inspires me to know that people out there read my writing and think it isn't half bad :-)

So thank you...from the bottom of my heart.

My love always,

Caroline

XOXO

Blip...blip...blip

2008-11-26T21:46:00.003-05:00

I am sad to report that after feeling worse and worse over the past 10 days I spent the afternoon at Shepherd Spinal Center (thanks for taking me Mom!) and my doctors think I am having another "exacerbation" or "episode", but I think I may prefer "blip". A blip implies a short, brief anomaly on the radar and while it is my third blip this year I hope it will be short-lived and I will be feeling better sooner rather than later. I will not bore you with details, but it is mostly just worsening of existing symptoms and a few mild new ones (feet totally numb all the time, and weakness in my hands). I am trying to stay positive, optimistic and rest lots and let the high-dose steroids run their course.

With only 18 months of this thing under my belt, I still have a lot to learn about my disease. While I certainly hate feeling this bad right now (and for the third time this year!!) in comparison to other MSers, my "episodes" have been fairly mild, i.e. I haven't gone blind or lost total use of any of my limbs, etc. etc. I wouldn't wish an MS relapse on my worse enemy, but still in the grand scheme I am grateful that I don't have it worse.

Anyway, just wanted to update everyone. Keep us in your thoughts and prayers for a quick recovery. I want to be able to enjoy all the upcoming festivities. Chris and I are going to have our first ever Christmas tree in our new house! Plus I am still in college and have exams to pass! Lots to do. Gotta feel better Sooner rather than later!

Look for my thanksgiving post to follow this one....and I expect lots of audience participation :-) XOXO

PS- for some reason this round of steroids has me looking like the Stay-Puffed Marshmallow Man. I am so swollen that the skin on my face is peeling, I can't get my wedding rings on and my shoes have all shrunken in my closet!! So if you have the pleasure of seeing me in Marshmallow mode feel free to bring along the graham crackers and hershey bars and we'll just make S'mores together :-) hehe

Pumpkins

2008-11-19T22:05:00.000-05:00

For most of us with chronic illnesses, every day is a balancing act.

With MS, you have to measure your "spoons" ahead of time and then sometimes re-evaluate your spoon supply throughout the day. (If you missed the Spoon Theory, you can read it here: http://wearingredshoes.blogspot.com/2008/03/spoon-theory.html )

For instance, I wanted to go to Target the other day. At the time I felt I had enough energy/eyesight/balance left to drive the 7 miles to Target, shop and drive home. About halfway through shopping I realized I was about to turn into a pumpkin (my latest catch phrase which reminds me of Cinderella, another lover of fabulous shoes!) So I am at Target and all of a sudden I find myself holding onto the shopping cart for dear life (in other words, my balance was beginning to fail me) and my legs felt as though they were pumped full of lead.

This type of scenario happens to me alot and when it does I have two choices: A) ignore my body, push on and finish what I am doing or B) go straight to the nearest register and get home to rest. Frankly, there are problems with both choices.

First of all, I want to be able to finish whatever I am doing: shopping for groceries, eating lunch/dinner with friends, etc. It is extremely irritating when the rude MonSter interrupts what I am trying to do!

On the other hand, if I keep pushing my body when it starts to give me these warning signs then inevitably I will have to pay the price in some way later on. It might be later that day (my pain level spikes or my vision gets worse to the point I have no hopes of driving or seeing anything worth a darn) or it might be tomorrow that I pay the price for what I did today.

The other thing about chronic diseases is that you have to take A Lot of medicine just to stay afloat. Some days I feel like I am 29 going on 89, certainly with the amount of my daily medicines. People with MS and other types of nerve damage don't have a lot of choices. They just don't make that many drugs to treat this kind of complicated disease and unfortunately none of these drugs come in XR versions. XR stands for Extended Release, meaning take one pill in the morning and then it releases little bursts into your body throughout the day. So sadly I have had to become a Pill Popper. I take pills 5-6 times a day in order to manage nerve pain and spasticity.

Last week I helped my stepdad do hair and makeup for his show "The Sound of Music". I had several kids assisting me in The Cave, as we affectionately call the makeup room. I would arrive around 4pm and help put on makeup and braid hair and put in bobby pins and during that time I would inevitably have to take a dose of pills. I was so afraid I would forget to take them, with the wonderful distraction of 45 teenagers, so I set my phone alarm to go off to remind me. By the end of the show's run, I had kids checking on me, "Caroline, you weren't in the Cave and your alarm went off. Be sure to take your pills," or passing them over to me while I braided hair.

I had worried so much about having to take all these pills in front of them, but it sparked all sorts of wonderful conversations, and the students opened up in new ways and shared things with me about their own lives. No one has it easy- everyone has some burden to bear, whether its a serious health problem or some other type of challenge to overcome. Everyone has Something.

I think what makes it so hard sometimes is that feeling of being alone in the world. I often feel alone in my disease. I am the only one trapped in this body, with these symptoms. It is easy to feel alone. But just the simple act of someone else reminding me to take my medications, or passing them across the room to me - those tiny gestures - they made me feel just a little less alone. To quote the cheesy "High School Musical", "We're all in this together..." and that means you have people on your side always. No matter what happens to you, No matter how many pills you have to take, Even if you run completely out of spoons and turn into a pumpkin right there in the middle of the Target!! No matter what happens there are Always people cheering you on, in large ways and in tiny ones, too. And sometimes it is those tiny gestures of love and friendship that keep us all going.

Friends

2008-11-01T20:30:00.001-04:00

This post is late, as are most things lately (read previous post!!) but nevertheless it was very important for me to share!!!

Let us go back in time to September 13th, to Great Neck, Long Island for the wedding of Chris' college roommate, Dominic and his lovely bride, Alexis.

We have both adored Dom since the UPenn days, but we fell in love with Alexis within 10 minutes of meeting her. Chris and I both had the same reaction: "Oh man...I hope Dom knows to hold on to this one!!" :-) We have enjoyed several destination wedding weekends with them and the other 415ers, and while they currently live in NYC we have talked them into coming down to visit a couple of times. Along with our dear friend Kempton they were the icing on the cake of Chris' surprise 30th birthday party. I will never forget the look on Chris' face as he turned around to see the 3 New Yorkers standing there to celebrate with him.

People that fly in for less than 48 hours just to celebrate your birthday with you are pretty serious friends.

But I digress...back to the wedding! It was a lovely weekend catching up with old friends, making new ones, getting to see the "Perfect Family" (I LOVE the Ainscough's) and toasting the soon-to-be Mr. & Mrs. The ceremony and reception were just stunning. Venue was amazing, every detail taken care of, and the Bride looked like a movie star. Chris stood proudly as a groomsman and before we knew it we were all enjoying the reception together.

When it was time for dinner we all headed to the ballroom. The table settings, flowers were just gorgeous. As I sat down I noticed my fancy china, silverware, a rectangular shaped card that I assumed was the menu and then a smaller round card above that. I wasn't seeing too well by that point in the evening (and my magical glasses clashed with my dress so I wasn't wearing them) but I finally closed one eye and tried to read the interesting round card to see what it said...and I was Speechless.

Printed out at every single guests' place setting was a beautiful card that read, "Dear Family and Friends, In honor of our guests, we have made a donation to the National Multiple Sclerosis Society. We thank you for being part of our lives and joining us on our wedding day. Love, Alexis and Dominic". And all of a sudden I am blinking back tears and doing that silly waving my hands at my face thing that women do when they are trying not cry! hahaha

Instead of giving their guests favors, our dear friends gave a donation to my favorite charity, in our hope for a cure. I don't think friends get much better than that.

I always feel so guilty about not spending enough time with the people I love, for not being able to do more, to fly up to NY or Cherry Hill to visit the people I hold near and dear, to spend more time with my family and friends here in Atlanta...I always feel as if I am not a good enough friend because this disease and just Life in general robs me of so much energy and time.

And then I see how much my friends love, support and appreciate me with an amazing gift like the Ainscough's gave me that day and I realize that the Wizard, as he spoke to the Tin Man, was right all along:

"And remember my sentimental friend...that a heart is not judged by how much you love, but by how much you are loved by others."

Work, work, work

2008-10-29T21:22:00.003-04:00

Well apparently going back to college is pretty much a full-time job...except I pay them instead of getting paid. It all feels quite backwards after almost a decade of being in the work-world. I know what I am doing is important and it has become important to me (plus I am enjoying it) but man, it is a LOT of work, and I finding myself with very little energy left for much else, be it social, volunteer work, or otherwise.

And then MS will rear up its ugly head for no reason (with worsening of symptoms or the short-lived new symptom) and then I have to force myself to stop and Rest because I have vowed I am NOT going to relapse AGAIN in 2008. 2 in 1 year is quite enough, thank you very much. I really want to be able to go a whole year without relapsing, but Baby Steps...I WILL make it to 2009!

It is going to take some re-prioritizing for sure if I plan on continuing school next semester, which I do for now. I am going to have to cut back on activities and not accept new things that will add time, stress and take away my spoons (I just declined serving on the Steering/Host Committee for "Music, Mummies, Martinis for MS 2009" and I hated it, but frankly I know it would be a lot of time/energy that I don't have right now). It it really hard because I like being busy even though my body doesn't anymore. Plus I hate saying no to people and things I love. But I have to look at the bigger goals of A) getting my college degree and B) staying healthy!

So sorry this is short and probably disjointed. I have 3 major papers due Soon and an exam Friday another Monday. College is a LOT of work! I guess that's why they don't just hand out degrees for a nominal fee somewhere.

Like all great things in life, you have to really work for it.

Much love always...XOXO

Quotes to share

2008-10-22T23:20:00.003-04:00

Both of these are pertinent to living with MS, but also to living in general!

I am still working on doing both of these myself :-)

"Several years ago I began the process of deliberately slowing myself down. When I begin to feel disconnected, I walk slower, type slower, and pay close attention to my task, rather than allowing my mind to whirl around. I practice deep gratefulness during those few moments." - Louise Monacelli

"We are never happy until we learn to laugh at ourselves." - Dorothy Dix

MS September Safari

2008-10-13T19:49:00.000-04:00

Here is Team Wearing Red Shoes at the Safari at Zoo Atlanta. We had a great day hunting for the cure. Our fundraising leaders were my nieces Ella and Emory! Way to go ladies!!

I had not been to the zoo in many years and getting to see it with my nieces and nephew made it that much more fun. And all for a great cause.

Now for those of you looking for future events (and good excuses to wear those red shoes) get out your calendars! Here we go...

**SAVE THE DATE**

WalkMS 2009 Marietta
Saturday, April 11, 2009

**Team Wearing Red Shoes has a first place title to uphold!!

Hope you can join us!! Will be sending lots more info in the months to come...

Music, Mummies & Martinis for MS

Saturday, March 21

**For those of you looking for a more upscale way to fight MS, this second annual event promises to be simply fabulous. More info will follow soon...

MS Awareness Week

March 2-8, 2009

**Get out your orange and wear it proudly this week to let people know about MS, what it is and how to help. More info to follow...

There are so many ways to participate and be a part of the "hunt for the cure".

Which event will you be joining?

C'mon...you know you wanna wear those red shoes...

Who Are People With MS?

2008-10-11T22:17:00.001-04:00

Today Mom and I attended a NMSS Meeting/Symposium at the Hilton downtown. It was a great event with an excellent turnout of MSers, their family and friends. Lots of assisting devices: canes, crutches, walkers, wheelchairs and scooters. And lots of MSers who "look as good" as I do, in other words you can't tell they have MS just by looking at them.

I recently filmed a short video clip for the NMSS which will play on their website when people donate to future WalkMS and BikeMS events. Several people participated in the filming, most of us living with the disease, and all of us living with very different levels of disability/disease. Yet seeing each of our clips, you realize the similarities. We all live with the uncertainty that tomorrow will bring. Will it bring a relapse? Will my regular symptoms be worse? New symptoms?? No one knows. One young man talked about balance problems and how handrails had become his close friends. :-) I look around and everywhere people are nodding their heads in agreement.

As different as MS symptoms and its people can be, in many ways we are exactly the same. We are people with families and friends and dreams about how we want our lives to be. Alot of us are having to tweak those dreams a bit, but we still intend on living out as many of them as possible! Read on...this was something sent to me by a friend in my MS Women's Group.

Warning: contains wonderful sarcasm!! :-)

Who Are People With MS?

We are your parents, your children, your brothers and sisters.

We are the person down the street.

We are that lady or fellow who may walk a little "funny" at the grocery store.

We are the people that you "tsk, tsk" over because we might "look too good" to use a handicapped space.

We are your peers.
We are human beings.
We are the faces of Multiple Sclerosis.

A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing, class, finances, educational background, language or religion.

We are both able to walk unassisted or we may have to use canes, walkers and/or wheelchairs. We jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between and are at every level of physical ability.

Of course we "look so good" while we are doing it.

We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable.

We may be able to do that something tomorrow though, or maybe next week.

Multiple Sclerosis is like that. We are like that.

We are visually impaired and we are not.
Some of us are hearing impaired, yet all of us occasionally have people talk louder to us.

"HOW ARE YOU DOING??? YOU LOOK SO GOOD!!!"

Of course we do.

Thank you very much.

We are, in fact, the very best looking people in the handicapped community. We have secret pageants every year to decide which one of our members is the best looking. Billy Crystal emcees, as his character Fernando: "and you look MAHVELOUS my dear, absolutely MAHVELOUS."

That is us.

We are brave. We are fragile.

We want to live and we want to end it all.

We look for support and we want to stand alone.

We are every person.

We are the people with Multiple Sclerosis.

And we are People, Just Like You....

~Author Unknown

Pay the Piper

2008-10-07T19:56:00.004-04:00

This past Saturday my band Paradocs played a gig at Cowboys. It was a benefit concert and all proceeds went to the restoration of the Strand Theater on the Marietta Square. We all love this historic area and were happy to donate our time and energy to raise money to rebuild this great venue. We had a great time doing some old songs and new ones. We were thrilled with the turnout, too. I rested up all day in preparation for the big night and I also tried to really take it easy the day after, too...

But nevertheless I am now sick with a nasty chest cold.

Maybe this happens to normal healthy people too. Or maybe people with MS that are on immune-suppressing drugs shouldn't be running around pretending to be rock stars for 2 hours, even if it is for a good cause.

I dunno. I just know that it stinks and has me feeling really down. I know it is only a stupid cold, but I can't help but feel depressed right now.

I think there should be a rule: If you have to live with a chronic disease that affects you with symptoms every single day of your life, then you should automatically be exempt from getting other things like the common cold or the flu.

So while I totally had a blast singing with my band on Saturday, it leaves me wondering if people with MS should be doing such things. Not that I plan on sitting at home like a vegetable for the rest of my life, but what is "too much" for a person with MS? All my books say "Don't overdo it," but what IS overdoing it? How do you know your limits, stay within them and still manage to be a normal person that Does things??

Because while getting a cold/infection is a bothersome nuisance for most people, for MSers it can be far more serious. Because of the medicine I take to control my disease I can't fight off everything that healthy people can fight off. Furthermore, when I get sick with even a tiny chest cold it really pisses the MonSter off, and he rears his ugly head by making all my MS symptoms worse, too. So I am in a lot of pain and my vision is Crappy, my balance is totally off (aka I look like a drunk person when I walk) and I am sneezing and coughing and pretty darn miserable.

Who knew there was such an icky price to pay for being a one-night-only Rock Star (who makes zero dollars because it was a charity event!)

Can we just find a cure for this stupid disease already??

I've got a life to live here!!

A Celebrity Sighting

2008-10-05T19:39:00.003-04:00

In my last post about going back to school I mentioned Zoe Koplowitz. I had planned on going back after the fact and adding the link to her website so people could read about her. But then of course I forgot to do it (typical blonde-MS-brain!) But THEN fate stepped in, not only reminding me, but warranting an entirely new blog post!

A couple of months ago my mom and I attended a Wellness Expo hosted by the NMSS and Zoe was the guest speaker. I have heard a lot of speakers at various things over the years, but she reigned over them all. She was the perfect mix of sincerity and sarcasm, humor and hope. She had everyone laughing and crying at the same time (“Laughter through tears is my favorite emotion!”) So of course I bought her book “The Winning Spirit: Life Lessons Learned in Last Place”.

You see, Zoe holds the Guiness Book World Record for the World’s Slowest Marathoner. This November will be her 20th New York City Marathon...and she has completed every single one with the MonSter on her back.

So after my “Just Do It” post, I emailed Zoe to share my blog with her and thank her for inspiring me to go back to school. And I thanked her for being such a great role model for MSers, too.

So, Chris and fly to NY for Dom & Alexis’ wedding (more on that later) and we have to take the train out of Penn Station to get to Long Island for the festivities. So it is Friday afternoon in Penn Station and as on most afternoons, I am dragging…and not just my rolling luggage behind me…my spoons are depleting rapidly. So when I spot a Starbucks I am thrilled at the prospect of a caffeine jolt to carry my through until I can get a nap in. Then I realize...standing in the line behind me, decked out in a gorgeous purple top, with equally fabulous jewelry and her signature magenta cane….is Zoe! I alsmot fainted right there in Penn Station. I mean, what are the chances?!? I walked right over, stuck my hand out and introduced myself,

“Hi, Zoe. My name is Caroline Kulinski. I heard you speak in Atlanta this summer and you probably don't remember me, but I actually emailed you recently to thank you for inspiring me to go back to college.”

“Oh My Goodness! Of course I remember you! That was the sweetest email I have ever read. I cried when I read it! ”

Then she told me that it was her 60th birthday that very day and she and her best friend were headed out to celebrate. I hugged her, and thanked her for everything and wished her happy birthday and told her I would email her again soon.

So check out my friend Zoe’s website: http://www.zoekoplowitz.com/

I should have known that Zoe and I were fated to meet again…In her book, she recounts the story of her very first NYC marathon back in 1988. As she crosses the Verrazano Narrows Bridge to start the race, she finds herself singing “Follow the Yellow Brick Road”.

No I am not kidding. If you don’t believe me, buy the book. It’s on page 45. ☺

So really, I should have known. Anyone who quotes The Wizard of Oz in her book is a friend in my book.

Just Do It

2008-09-06T10:33:00.005-04:00

“Do the thing you don’t think you can do”, she says. “Do the thing you are most afraid of and you will then realize you are capable of more than you ever thought possible.”

I am slightly paraphrasing based on memory, but this was essentially what Zoe Koplowitz said to our group of MSers at a recent NMSS Wellness Expo. I sat there stunned at her words and found myself laughing and crying through her inspirational speech. I think her words ring true for anyone – MSer or not. What is the thing you are most afraid of? Are you afraid of doing it for fear of failure? For fear of the process of doing it? Ponder on it a minute and I will share my own story, because as soon as those words flew out of Zoe’s mouth I knew what I had to do.

I had to finish school.

There I said it. I have never made it a secret that I didn’t graduate from college. I don’t always volunteer the information either. I completed 2 full years plus one more semester at the University of Cincinnati, College-Conservatory of Music and then I withdrew, moved back to Atlanta, began working to support myself and the rest is history. I don’t think not having my undergraduate degree has hurt me all that much in the 10 years since I left CCM; however, it has always felt like this cloud looming over me, pointing and jeering at me behind my back. I always meant to go back. I never saw myself as a person who wouldn’t finish college, it just sort of turned out that way. I was working, making good money, having a career. Then I was getting married and starting my own business on the side teaching kids to sing and dance and life was good. Who needed a college degree? I didn’t have time to go back. I couldn’t justify spending that kind of money anyway. Who would ever really care if I graduated or not?

Well it turns out, I cared. I knew that I hadn’t finished and I cared. It was the thing I had been most afraid of doing. I might fail (again) and have to drop out. Or maybe I wouldn’t be a very good student. I would be too old – the old married lady hanging out with the 18 year olds. And now I could even blame MS for making it too hard to go back! I could have come up with two dozen really good reasons to not ever finish…
Damn that Zoe.

I had to make it as easy as possible on myself. Location was an issue. I don’t always see well, so it had to be easy to get to if I was having a bad day. Well, it turns out there is a school approximately 4 miles from my house called Oglethorpe University. I applied online on a whim, paying my $35 application fee. I sent my transcript and my recommendation form (thanks George!) and I wrote an essay that recounted a particular lesson I had learned from MS (might have even been a cut and paste from a previous blog entry!) All of a sudden I am getting phone calls from the Admission Office and they are offering me a place in the junior class AND offering me a University Scholarship!

I started back to school on Monday, August 25th. The first week was utterly terrifying, finding my way around, battling the heat and fatigue and my rising pain issues of late. It didn’t help matters that I spent last weekend hooked up to immune suppressing steroids to get this quasi-relapse under control. How many college students have to deal with that their first week back? (I am such a Drama Queen!!)

But with the second week now behind me I am finding that I actually might be kind of enjoying it! I am slowly adapting to my new persona as College Student. I have a new backpack and notebooks and new highlighters and pens and am making new friends. Most of the kids in my class find it fascinating that A) I am married, B) I own my own home and C) am rapidly approaching age 30. I haven’t disclosed my MS much yet. I did meet with Oglethorpe’s Learning Resource Coordinator to discuss the issues of my disability and he was amazing. He has ordered my books electronically where I can download them and my computer can read them to me. He told me that if I ever do have to miss class to undergo treatment related to my MS, they will help me work through it so I wouldn’t have to withdraw or fail the class or anything.

I got my very first paper back yesterday and it was a A! Chris put it on the fridge :-) But I am really trying not to be an overachiever about such things. I don't expect to get A's on everything. I am perfectly okay with B's, even C's. This isn't about the final grades. It is about the process. And there is no timeline. I have no idea how long it will take me or if I will graduate. I am taking it one day at a time. But I suppose I am giving it the old college try.
Wish me luck!

Do the thing you don't think you can do.

What have you got to lose?

If you fail, you fail! So what!

Failing is a great learning process, too. :-)

Whatever it is you are afraid of...Just Do It.

XOXO

Blip

2008-08-31T22:34:00.003-04:00

A quick update to let everyone know I had a minor blip on the MS radar this weekend...

Had an appt at Shepherd Spinal Center on Thursday to discuss my recent increase in nerve pain and spasticity. My team of doctors/nurses felt this change was most likely due to minor inflammation in my brain. This was possibly brought about by my recent sinus infection (infection is a very common trigger of MS relapse/exacerbation/episodes). They wouldn't call it a "relapse" so I am going with "quasi-relapse". :-)

Long story short I started Solu-Medrol (IV steroid infusion) on Friday, completed Day Two yesterday and completed final dose this afternoon. Whew! So happy to have it over with. I am feeling a little crappy today, no doubt from the massive amounts of meds being pumped into my veins for 3 days. But hopefully this will help get my pain levels back to normal and manageable.

We are so blessed with so many people who look out for us, send us happy thoughts...on the Good Days and the Bad Days and all the days in between. It means more than you could ever know.

I have LOTS of new blog posts in the works, but am understandably behind after this weekend. But look for more from me very soon.

My love always,

XOXO

MS September Safari

2008-08-24T14:52:00.002-04:00

Our websites are finally up and running!
http://main.nationalmssociety.org/goto/carolinesafari
OR
http://main.nationalmssociety.org/goto/redshoesafari

The email feature on the site was acting up, so if you just got a weird email from me, ignore it. I am sending the corrected version ASAP. :-)

Would love to have you join us for a fun day at ZooAtlanta!

This will be a very family-friendly event, so little ones are welcome...as long as they participate and do their best to fundraise with us!

You would be surprised how easy it is to raise $100 for a cause you believe in. $25 from 4 of your neighbors or $10 from each of the people on the soccer team. Small amounts add up quickly!

Hope lots of Red Shoes will join us on our Hunt for the Cure!

Don't Panic

2008-08-18T10:51:00.002-04:00

I read a magazine article recently in which the author referred to herself as a "disaster magnet". While this probably sounds a bit over dramatic, my heart did go out to the writer. Everything from death of a close family member to diagnosis of a serious, potentially fatal illness, to the loss of her career and income - all of this had happened to her, in a rather short amount of time. She began thinking and saying, "OK then. What's next?" as she anticipated the next horrible thing bound to come her way. She started having anxiety attacks and found herself in a constant state of worry.

I immediately felt a kinship with this woman, as I recounted my own series of medical disasters:
April 2006: I find an odd, small, hard lump in my left breast. I see one doctor then a radiologist as it is deemed "suspicious". A biopsy concludes it is most likely a benign fibroadenoma tumor, and it may or may not continue to grow.

June 2006: I am jolted awake at 6:30AM with the worst charlie horse of my life (a possible precursor to MS spasticity?? dunno...) I am overcome with pain...and then with nausea. I run to the bathroom to vomit. I never make it to the bathroom. I faint, falling face forward onto, well, my face. I knock out my front tooth and also bite through my lower lip on impact. An ER visit, 11 stitches, a root canal and a crown later, I am doing much better, and my dentist and plastic surgeon did such great work you can hardly tell anything ever happened.

November 2006: Six month recheck of lump determines it is growing and I undergo my first real surgery to remove my stubborn growing lump. The surgeon is amazing and she does a great job.

April 2007: I wake up one morning with blurred vision. I figure I must be really tired or didn't sleep well the night before or something. 24 hours later it is getting worse and is now true double vision. I call my dad who gets me in to see an ophthalmologist, then a neurologist, then I have an MRI, then neurological function testing and finally a spinal tap. Before we know I am diagnosed with MS. Neuropathy (aka horrible icky nerve pain) starts shortly after the vision problems. I begin my treatment at Shepherd Spinal Center which includes drugs to help manage my pain and spasticity plus the Wonder Drug to help slow the progression of my disease. We wait for this first exacerbation/episode/relapse to end, hoping that with it, my pain-free-single-vision body will return.

March 2008: Almost a year later, the pain and double vision are still hanging around. But I am adjusting as well as anyone can. Then comes...my first official relapse (they actually don't call your first diagnosis relapse a relapse. it is very confusing). With it comes vertigo and mind-numbing pain, mostly in my arms. A round of solu-medrol later I am doing much better.

Frankly, I think that is a lot of medical drama for a 2 year span for anyone, even a Drama Queen! So does all this make me a disaster magnet, too? The article I read went on to say how every little thing then became an opportunity for further crisis. Evey car trip a potential for an accident, every pill taken could end with allergic reaction, every phone call was surely someone calling with more bad news. I also have days where I am certain something horrible will happen. I started to become totally neurotic about taking any new medication, certain that I would anaphylax, end up in the hospital. There was a chance I would die.
On my really bad days when my eyesight is crapola and neuropathy is kicking my butt, I sometimes don't think there will ever be light at the end of the tunnel.

I have now found that the trick is asking yourself, "In this situation, what's the worst thing that could happen? Now what if that thing DID happen?" I know it sounds a little depressing, but stay with me a minute here. Let's say the worst thing would be losing your job, for example. Yes that would suck. In this sucky economy, it would really really suck. (Sorry Mom, I know you hate that word, but I just had to use it here!!) But would losing your job mean you are any less of a person? Would it mean that you aren't wonderful, smart, loving, beautiful, etc, etc? Of course not! You would still be You. And as Fred & Ginger said, "You pick yourself up, dust yourself off, start all over again," and you would then go out and find an even better job. Or you decide to rethink your career entirely! And this mentality can be applied to whatever it is you are most afraid of- even if it DID happen, you would still be You. You would find ways (possibly after some tears, some yelling, lots of support from your loved ones, perhaps even therapy!!) to be happy and make a new path for yourself. Because let's face it, the alternative of feeling sorry for yourself, constantly feeling anxious, dreading each and every day...that is no way to live.

I will share a dirty little secret. Ok, it's not really "dirty" but secret nonetheless.
I had started to become really-super-neurotic about taking my medication, especially new medication. Sometimes I would get panicked before my nightly meds, or right before I had to do my injection I would start hyperventilating, feel lightheaded, the works! (Dad, I know how shocked you are that I had to get out the paper bag to breathe in! haha) Anyhow, in my intelligent brain I knew how ridiculous this was. The chances of having an adverse reaction to a drug you have been safely taking for a year is slim. It happens, but rarely. There was no cause for immediate concern, and yet I couldn't help myself! Something HAD to be done here. This had to stop.

So I said to myself, "What's the worst that could happen?"
"Well," I told myself, "You could anaphylax and die right here on the living room floor, as your poor husband stares down at your lifeless body and your bipolar cat gnaws at your lifeless hair, which is beyond weird, because though my hair smells good, it can't taste that good and yet cats seem to love..." and suddenly the whole thing just became so ridiculous I couldn't help but laugh.

And that is the key: the ability to laugh at yourself can make all the difference in the world. So now when I try a new med or when I start to feel the tightness in my chest before my injection, I have a new little mantra (which WILL remain secret!) and it always makes me laugh at myself and reminds me to never Never take myself, or anything, or anyone TOO seriously. The world isn't out to get me, though it has sometimes seemed that way :-) It is just trying, though often in very strange ways, to make me a better person.

XOXO

Save the Date!

2008-08-04T16:35:00.003-04:00

I am so behind on so many things I don't even know where to start. Fortunately I know where to end, hence the blog title. Keep reading!

This summer has been so difficult- more than ever before I have felt as if I am constantly running to keep up with the rest of the world, and yet no matter how hard I "run" I always end up in last place. Or maybe second to last place :-) The heat has affected me so much more this year. Maybe I was still too Dx-Stunned (Diagnosis-Stunned) last summer and I didn't notice it so much. Or maybe this summer really IS hotter, or maybe I am just getting older and it has nothing to do with MS. Or maybe my MS is getting worse?? Enough already. You could get dizzy thinking about the "Why". It is what it is. Don't know why. I will allow myself a 15 minute pity party. Then I will move on. In Summary, this summer has been kicking my butt.

I turned 29 a few weeks ago. It was mostly a blur. I got hit with a bad cold that then became a bad sinus infection. I felt so horrible the week/week after my birthday that I never even got around to putting all my Wonderful cards up on my cabinets, which is one of my favorite things about birthdays. they are all still sitting there, in my lovely Kosta Boda bowl (a wedding present from my mommy) so they look nice, but still. You know things are rough when the cards don't make it up to display! Anyway, I treated the infection with antibiotics. it got better, then it got worse again, switched antibiotics. Hoping for the best. I have gone through so much Mucinex, Afrin, Dayquil, Nyquil and Kleenex that I should have bought stock in them all! I have to remind myself that the whole point of Betaseron (aka Wonder Drug) is to sorta suppress my immune system, so to speak. And that is what you do for an incurable autoimmune disease. So why then, am I so surprised when A) I get sick, B) it takes longer for me to get over being sick. I am On Immune Suppressants. DUH! At any rate, being sick before, during and after your birthday + the hell that is Atlanta in July just didn't leave me with the best birthday ever. But it is only a birthday. I can try again next year :-)

Chris and I are fast approaching a busy wedding season with 3 weddings in a 5-week span. It is exciting and I have to remember to pace myself accordingly. Especially while it is still so darn hot! Chris bought me this amazing thing called a cooling vest: http://arcticheatusa.com/
It is this vest filled with crystal things that you activate and they turn into gel ice packs. You keep it in your freezer then take it out and put it on. It is all about keeping your core temperature down. When MSer's core temps get too high, it is like an electrical system overheating and shutting down, or causing crazy malfunctions. I look like a member of a SWAT team wearing it, but it really does work. And don't worry my brides out there - I will NOT wear my cooling vest to your wedding! :-) Though my next project may be to create a more fashionable chic cooling product.

So now onto the good stuff:
Save the Date!
2008 MS September Safari
Saturday, September 27th
9:00AM
Zoo Atlanta

I am very excited to announce that I am chairing a new NMSS event! We wanted to do something more family friendly that kids (and kids of all ages) could enjoy. It is a first time event, so we are still working out all the details, but mark your calendars now!

I would love to have lots of Red Shoes there to support MS and to enjoy Zoo Atlanta. OR if you have a group of people (church groups, daycare groups, sports teams, etc, etc) that you think would like to be involved and start their own team, that's great, too. The more the merrier.

And of course this IS a fundraising Safari...we are exploring for the cure! Details to follow, but what a great way to get kids involved and learning about charities, philanthropy...ok, maybe a 6 year old isn't ready for the vocab word, "philanthropy", but you get the idea. And I gotta tell you - No One can raise money like kids can. Seriously. Did you SEE Louis Nanda's WalkMS webpage? He raised some serious money! How can you say no to an adorable 2 year old asking you to support a good cause for his "Aunt" Caroline??

So info coming soon to you all via email (since I know only 8 or 9 of you are out there actually reading this...Hi Adele!) Hope you will join us. It will be a fun event and hopefully by 9/27 cool enough for me to enjoy the Zoo as well. if not, no worries - I will be wearing my sporty new cooling vest, and my red shoes. of course. :-)

XOXO

Overachievers

2008-07-23T16:35:00.007-04:00

Perfectionists. Type A Personalities. Overachievers.
I have always been a member of all three clubs.

I have always wanted to be the best at everything I did. Mediocrity was never an option for me. I have trouble sitting still for too long. There are too many things I want to be doing.

As we age, we can no longer do all the things we used to. With age comes the loss of energy, among other things. What you could do in any given day at 20 seems nearly impossible at age 40. I have just had to learn these lessons a bit sooner than most. What i could do at 27 now seems ridiculous at 29, but a lot happened in those 2 short years :-)

I have always struggled with defining myself by what i "do", by my accomplishments and by my productivity. As we age (or even face a neurological disease!) we must come to terms with the fact we can no longer accomplish as much as we once used to. But that doesn't make us less as people. Our lives can be rich with so much without being what we used to think of as "productive".

Easy to say. Much harder to come to terms with.
If I cannot define myself by what I "do" or "accomplish" then who am I? There are so many old labels that I can no longer live up to. For example, I am known for being fairly entertaining. I tell funny stories, I am occasionally witty. I think people enjoy my company, for the most part. So what about the days when I am really struggling to walk straight, can't see worth a darn and am in pain? What if I don't feel well enough to be funny and entertaining? can I still show up to the party as I am, even if I am not able to keep up my usual witty repartee? Or will everyone be disappointed that I'm not living up to my "usual self?"

Aren't we all constantly changing? relationships change, friends change, people have children and lose loved ones and get sick and get new jobs and all sorts of things. So I guess it is inevitable that I would change, too. Not in ways I ever anticipated, but that's Life, right?

Perhaps I have to come to terms with no longer being able to BE an Overachiever. I am going to have accept the words "good enough" and let words like "perfect" be something that lives only in myth and legend.

In fact, I have been sitting here trying to end this blog post properly for the past 20 minutes.
I am now walking away.
It is good enough.
It is not perfect, and sure I could have probably come up with a better ending, but I am really tired and fighting what my dad thinks is probably a sinus infection and I should be curled up on the couch with my husband and my box of kleenex.

It is good enough. And so am I. :-)
XOXO

2008-07-17T17:31:00.003-04:00

Pain...the body's way of letting you know something is wrong.
Your throat hurts, you find out you have strep throat and need an antibiotic.
If you break your arm, it needs a cast, and without pain you might not have known it was broken. I could go on, but you get the point. Pain is actually important. It is your body's way of communicating with you.

Neuropathic pain is the same- it is letting me know there is something wrong.
DUH. I have lesions. In My Brain.
But what else is the pain trying to tell me, perhaps?

It is a common joke among MSers that there should be some sort of betting and/or drinking game when watching the tv show "House". For those of you that don't know, it is a show set in a University hospital, where the lead character, Dr. Greg House, MD, is the country's leading diagnostician. He takes the medical cases that no one else can solve. The weird, crazy stuff. Like MS! So anyhow my husband and I often make bets on how long into the episode someone will throw out "multiple sclerosis" as the patient of the week's diagnosis. 80% of the episodes talk about MS, at least briefly.

Anyway, I was watching an episode a few months back where a young patient on the show was actually diagnosed with MS. The patient asked what MS was. And the handsome Dr. Chase tried to sum it up in one sentence. It went something like this:
"Well, MS is a painful disease. It can affect your bladder/bowel functions. It can also affect mobility. It is incurable, but there are lots of promising treatments to prolong your quality of life..." blah blah blah. Take it all with a grain of salt - it IS a tv drama! They have to make everything sound dramatic; however, all of those things Are true about MS. And it has stayed in my mind that the writers (for whatever reason) chose "pain" as the leading symptom when sharing this character's fate with him.

MS is a painful disease. I have been sorely reminded of that fact this week.
Maybe its the summer and the heat. I also seem to be fighting some sort of head cold. And since heat and infection are both major stressors to my disease it makes sense that i feel pretty awful. I am having horrible neuropathic pain/neuralgia, which I wouldn't wish on my worst enemy. So while this particular pain isn't telling me anything new, it must still be trying to tell me something. To Slow down? To get more rest? To keep my core temperature down and avoid the Atlanta heat? telling me my cold needs some TLC and vitamin C and the ultra soft kleenex?

I need to be a better listener. What is it telling me?

"Go drink more water. Go to bed super early. Find something good to eat for dinner. Stop judging yourself for being angry and sad about being in so much pain. Its okay to be angry and sad. Its also okay to have chocolate on those days."

MS-Free Zones

2008-07-05T21:58:00.000-04:00

Last week I helped my sister Helene, who asked me to come in and do hair & makeup for 10 actors & actresses appearing in "Charley's Aunt". The students were awesome and so patient with me as I played around with different wigs and moustaches and makeup techniques. I actually had to pull out my old college textbook to remember how to properly apply a bald cap (Yes, I actually had an entire course in college devoted to stage makeup techniques!)

I re-learned old makeup techniques and invented some new ones. But what I really learned last week came as a complete surprise...

For three hours a day I was just "Caroline, the lady helping with hair & makeup". The kids didn't know that my feet have been almost entirely numb for weeks. They didn't think anything of it when I squinted one eye at them, or looked at them sideways to try and see them better. They had no clue that I was anything other than clumsy when I dropped things every five minutes. They merely thought I was flaky when I asked them the same questions, "Did I tie the gold ribbon or the pink ribbon in your hair yesterday?" when in reality my short term memory is not what it used to be.

For three hours a day for five whole days I was just someone who helped put on a show. As I braided hair and powdered faces I could almost forget the constant pain, the numbness, the poor vision. I could almost, Almost forget that I had MS. For three whole hours!

It reminds me of the line from "The Wizard of Oz", in the very beginning, when Auntie Em tells Dorothy to go find "a place where there isn't any trouble".

"A place where there isn't any trouble. Do you suppose there is such a place, Toto? There must be. It's not a place you can get to by a boat or a train. It's far, far away. Behind the moon, beyond the rain..." And Dorothy begins to sing my favorite song.

A place where there isn't any trouble...

An MS-Free Zone...A place where MS is not allowed to visit.

In those few precious hours I learned that moments in time exist where I can just be Caroline. I can make-believe that i am not sick, not in pain, not impaired. I know it is simply a moment and it will not last; however, having those moments gives me strength. And hope. It makes the moments of pain and frustration a little easier.

Who knows where the next MS-Free Zone will be? I am excited at the thought of it, whether it is three hours or three minutes. I aim to find more of them. And then somehow, slowly, I may be able to find my way back to myself. Not my former self, but a new version. Someone I am still getting to know, but every day liking a little bit more. :-)

Attitude is Everything

2008-06-18T07:39:00.003-04:00

People ask me all the time, "How do stay so positive having this painful, disabling, potentially devastating disease?"
I usually answer with some variation of, "Well. What choice do I have?"
But what goes unsaid is that there IS a choice.
There is Always a choice. It may not be the choices you want. I certainly would not have chosen MS for my life, but since it chose me I can now choose how I will react to it.

This story was sent to me by my Betaseron nurse Judy:

John is the kind of guy you love to hate. He is always in a good mood and always has something positive to say. When someone would ask him how he was doing, he would reply, 'If I were any better, I would be twins!'

He was a natural motivator. If an employee was having a bad day, John was there telling the employee how to look on the positive side of the situation. Seeing this style really made me curious, so one day I went up and asked him, 'I don't get it! You can't be a positive person all of the time How do you do it?'

He replied, 'Each morning I wake up and say to myself, you have two choices today. You can choose to be in a good mood or ... you can choose to be in a bad mood I choose to be in a good mood. Each time something bad happens, I can choose to be a victim or...I can choose to learn from it. I choose to learn from it. Every time someone comes to me complaining, I can choose to accept their complaining or... I can point out the positive side of life. I choose the positive side of life.'

'Yeah, right, it's not that easy,' I protested.

'Yes, it is,' he said. 'Life is all about choices. When you cut away all the junk, every situation is a choice. You choose how you react to situations. You choose how people affect your mood. You choose to be in a good mood or bad mood. The bottom line: It's your choice how you live your life.'

I reflected on what he said. Soon hereafter, I left the Tower Industry to start my own business. We lost touch, but I often thought about him when I made a choice about life instead of reacting to it. Several years later, I heard that he was involved in a serious accident, falling some 60 feet from a communications tower. After 18 hours of surgery and weeks of intensive care, he was released from the hospital with rods placed in his back. I saw him about six months after the accident. When I asked him how he was, he replied, 'If I were any better, I'd be twins. Wanna see my scars?'

I declined to see his wounds, but I did ask him what had gone through his mind as the accident took place. 'The first thing that went through my mind was the well-being of my soon-to-be born daughter,' he replied. 'Then, as I lay on the ground, I remembered that I had two choices: I could choose to live or...I could choose to die. I chose to live.'

'Weren't you scared? Did you lose consciousness?' I asked

He continued, '..the paramedics were great. They kept telling me I was going to be fine. But when they wheeled me into the ER and I saw the expressions on the faces of the doctors and nurses, I got really scared. In their eyes, I read 'he's a dead man'. I knew I needed to take action.'

'What did you do?' I asked.

'Well, there was a big burly nurse shouting questions at me,' said John. 'She asked if I was allergic to anything 'Yes, I replied.' The doctors and nurses stopped working as they waited for my reply. I took a deep breath and yelled, 'Gravity''

Over their laughter, I told them, 'I am choosing to live. Operate on me as if I am alive, not dead.'

He lived, thanks to the skill of his doctors, but also because of his amazing attitude... I learned from him that every day we have the choice to live fully.

Attitude, after all, is everything.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.' Matthew 6:34

Ways to give

2008-06-11T21:31:00.004-04:00

I have been so bad about blogging this month!
The heat is really hard on us MSers. I won't bore you with the ugly details but I have been a little under the weather this week. Today was better, it was a little cooler. But man am I dreading August right about now....Ugh.

So while summer brings heat, humidity, pool parties and other things it also brings....My Birthday. Yes, I am using my blog to remind everyone of my birthday (July 19th...did you write it down?) but really I bring it up because I would like to address a more serious issue:

I do not need presents.
Cards, yes. I need cards.
I am truly a kid at Christmas every time I go to the mailbox in the month of July. I admit it. Call me crazy. I am a card addict. I have a problem. There should be a support group! So yes, please feel free to send cards. :-D
But back to presents- I don't need anything. Really.

However, if you would like to buy Yourself or Someone Else you know a fabulous present in honor of my birthday...well, now that would be a swell idea! And do I have some ideas for such presents? Well of course I do!

For the dog lovers in your life we have a Dog Toy for MS!
http://www.carealotpets.com/item-detail/?ItemID=000000000009925

For the women in your life (or men, I don't judge!) we have Earrings for MS!

http://www.christopherandbanks.com/product/index.jsp?productId=3036655&cp=2958674.2958736&sr=1

Hey, its summer- the sun is bright and sometimes you need to protect the eyes and/or the head when you're out and about...Hats for MS!

http://www.msstoreipp.org/hats-caps-c-1_8_31.html

(this site also has shirts, mugs and more - links are on the left-hand side)

For anyone and everyone: Magnets, Mugs, Mousepads and more for MS!
http://www.zazzle.com/ohgreeting/home

(this zazzle site is great - a lot of the products are designed by the daughter of an MSer, including the items with the ballerina with...wait for it...red shoes on!!! I have already purchased red shoe stamps. You will be seeing them from me soon!)

So this year treat yourself to one of the fabulous products...send one to a friend...send one to your great aunt myrtle...then just send me a nice Hallmark and tell me what you bought and who you gave it to.

I can think of no better birthday present than a bunch of cards plastered all over my kitchen telling me about the MS gifts given to people everywhere in honor of my birthday!!

I am woman

2008-05-30T20:23:00.008-04:00

I like women. I like them as much as or more than I like almost anybody.

But the women I like best aren't always strong, and they're certainly not invincible. They're creative, they're idiosyncratic and they're around if you need them. They complain, they console, and the can shop their way through virtually any crisis.

They know how to raise hell and they know how to raise children. They can spot a scam, a lousy doctor and a crummy boyfriend in under 10 seconds. They've perfected the withering stare that makes a nasty salesperson, flight attendant or coworker fold like an origami swan.

My favorite women may feel bad about their necks but they feel pretty damn good about their legs. They've never met a carbohydrate they didn't want to have a close personal relationship with. They brake for sex, sleep and solitude, cashmere and caffeine.

They've got nerves of steel, the courage of their convictions and excellent footwear. They're sugar and spice and everything I aspire to. They remain cautiously optimistic.

We are strong, and when one of us isn't feeling all that invincible, the other will take the wheel.
We are women.
- Lisa Kogan

2008-05-20T23:00:00.011-04:00

Summer.

A time of family vacations, swimming and laying by the pool, longer days and hotter nights, mosquitos, fireflies...memories of running through sprinklers, eating popsicles and spitting watermelon seeds...trying not to get too sunburned at the beach and as bathing suit season approaches, thousands of women regret not exercising more during those cold winter months.

I was born in July, so summer also means I have a birthday to celebrate. Summer has a lot of positives; however for MSer's, summer comes with a few negatives as well.

I made peace with my cellulite years ago. I can't really do anything about it. Also I am just under 6 feet tall. I am not a small person, nor am I a supermodel, so being a size 0 or 2 or even 8 is just not in my cards. Unless I want to starve myself, which I don't. I like having curves and frankly this past year they have come quite in handy as I have to inject myself sub-cutaneously every other day. For those not familiar with "sub-q" injections, you have to pinch about 1-2 inches of flesh away from your body to avoid hitting muscle. This is a heck of a lot easier when you have more flesh! In fact super-skinny people have to do subq injections differently than us curvy folks to avoid hitting something important, like muscles or organs!
So i am not going to look like Heidi Klum in a bathing suit and I am okay with that.

I am not yet okay with the loss of my perfect porcelain skin. I was blessed with a lovely complexion. So even if I was curvy in my bikini my skin was quite pretty and so I hopefully wasn't offending too many people. I would get a nice smattering of freckles in the summer and if I wore sunscreen, I wouldn't burn too bad and would get a nice golden glow. Now to see me in a bathing suit you would think I was some sort of alien torture victim. The entire surface area from my belly button to my knees is covered in welts, bruises...red and purple raised splotches that somewhat resemble hives. And when you have to give yourself injections every other day, by the time one set heals you are already covered with the new round of injection site reactions, so there is no "down time".

Don't get me wrong. I love my magical wonder drug that is keeping MS from eating up my entire brain and slowing the progression of my disease. It is truly a wonder drug and without it I shudder to think what would happen. I try to think of these bruises as Battle Scars...the proof of the ongoing battle I do with the MonSter and each welt represents a win for me!

That is until bathing suit season arrives...and then I feel sorry for the poor people that have to look at my skin, and think A) I am very clumsy and walk into things constantly, or B) I am starting some strange and entirely unattractive tattoo trend.

Plus isn't going to the beach supposed to be a "vacation"? It is very hard to feel like you are on vacation when every time you suit up and look in the mirror you are slapped in the face with the reminder of your disease. And I haven't even mentioned my Favorite part about summer nowadays.
Two words: Heat Intolerance

See, for people with MS, getting overheated can cause really bad things to happen. They exacerbate current symptoms, can temporarily bring on new symptoms and basically just make you feel really, really awful. When my body temperature rises usually the following happens (in no particular order): my vision goes completely to crap and even magical glasses do nothing to help, the ringing in my ears becomes deafening, my hands and fingers do this buzzing/tingling sensation which is often followed by numbness, my feet and toes go numb and my legs start burning in pain and finally the Boa Constrictor grabs me around the middle for a big ole hug. Once this happens the cooling down process (getting into someplace with A/C and covering myself in ice packs) can reverse some symptoms. Others will then require medication. Then once all painful symptoms are under control you can return to the beach or the pool for Round Two. Lather, rinse, repeat.

I think the beach can be a lovely relaxing place. I used to enjoy sitting under an umbrella with a crossword puzzle and a cold fruity beverage, watching the waves roll in. I have even been known to make a sand castle or two in my past. But it is very hard to relax when the heat brings on such painful things. As luck would have it, the beach is my husband's #1 vacation of choice and he is like a kid at Christmas when you put him on some sand in front of an ocean.

We are headed to the beach with some friends this holiday weekend. I am packing my usual array of sunscreens, bikinis, cute cover-ups and hats, crossword puzzles (some large print!), my ipod and flip-flops. I am also bringing the 5 bottles of medication I require daily plus 3 injections, plus all 6 ice packs from my freezer. And I try to remind myself that "going to the beach" is really just an excuse for a change of scenery, to hang out with friends and maybe get a few new freckles. It doesn't require sitting 24/7 under the blazing sun.

And if anyone asks, "Oh my! What happened to your legs and your stomach? What are those?"

I simply reply,"Those are my Battle Scars, thank you very much."

Quote of the day

2008-05-20T15:11:00.004-04:00

"Every day may not be good, but there's something good in every day."

- Anonymous

Fear not for the future

2008-05-13T21:28:00.004-04:00

Do you ever feel as if you are rushing every day towards the future, often barreling forward at such a speed that you are forgetting to stop and smell the proverbial roses?

I have been one of those people most of my life and while in many ways, MS has helped me to slow down, in other ways I feel more pressure than ever to keep moving forward, often at an unrealistic pace.

Last week, there was a segment on CBS Sunday Morning about a woman in her late 50’s who had been living with MS for over a decade. Her passion was climbing mountains. Literally. Like Mt. Kilimanjaro or crazy big mountains like that. She had set a goal for herself to summit a certain number in a set time period. What struck me was during her interview she said something to the effect of, “I want to do as much as I physically can before my disease progresses further and makes it impossible. I will climb as many mountains as I can before that day comes.”

There is a quote that pops up in numerous books on MS and on websites: “Hope for the best. Prepare for the worst.” After reading this phrase a zillion times I finally realized I had rarely processed the second sentence. I had been too busy hoping for the best! This fellow MSer on my TV seemed to be doing both. She was pushing her body to its physical limits while she still had a choice in the matter…before MS took it from her in bits and pieces, making things like mountain climbing next to impossible.

Suddenly I felt this incredible weight in knowing that I, too, could potentially have a much shortened “quality of life”. Sure, I could also be hit by a bus tomorrow and obviously we cannot live our lives paralyzed by fear of the unknown future.
On the other hand, there is a word I have had a hard time mentally digesting: degenerative. I think overall I have handled my diagnosis better than most and I digest other words pretty darn well. For example,

Chronic: means I don’t ever get a vacation from MS. It is with me all the time.

Incurable: I get to have this stupid thing until some brilliant scientist somewhere figures out how to make it go poof!

Neurological: affects my brain, and in turn my central nervous system, so basically everything (except my striking good looks)

But, Degenerative: something which worsens over time…

And yet there are so many MSers out there who have been on one of these fabulous drugs and have been relapse free for years! YEARS! That is awesome. Then there are MSers on the exact same drugs who have relapse after relapse and get progressively worse and worse. And no one knows why that is and hence the frustration of scientists trying to cure such a tricky disease.

So what now? Do I finally update and complete that life list of mine trying to check everything off at lightening speed in hopes of outrunning MS? Sounds difficult…and exhausting. But in 10, 20, 30 years I don’t want to look back and say “If only…”

Sometimes it feels like such an effort just to get through any given day. The thought of taking on something as mammoth as mountain climbing (or whatever else is on your life list)…well, it just feels impossible. Where do you begin? HOW do you begin? Which goal do you choose to complete first? Sing the national anthem at a sporting event? (been on my list since 1991) Swim with dolphins? (been on the list at least that long) Own my own home? (Check!) Own my own horse? (I think this was one of those When-I-Win-The-Lottery goals…) Travel to Europe? (Certainly not with the current exchange rates!)

And the list goes on and on. It doesn’t even include all those everyday things in life that I want to do like entertain in our new home and throw all sorts of parties: tea parties and cocktail parties and sing-a-long parties and wacky theme parties and Halloween parties. I want to learn to be a better cook and how to make a perfect dirty martini like my husband can. I want to FINALLY get my house done and in order and furnished. I want to do all sorts of traveling. I want to be a better calligrapher and a better singer and teacher and choreographer. I want to figure out what I want to be when I grow up and make new friends and visit with old ones. I want to go to comedy clubs and go to Broadway shows and watch improv and visit art museums. I want to do all these things andso much more.

What if my vision continues to get worse and I lose my sight completely? Should I visit all those museums now so that i can at least see parts of the paintings??

Or if I knew I would start having trouble walking, should I do all that traveling now, while I don't have to worry about handicapped accessibility?

If only there was a crystal ball so that we could all take a peek and know what our future holds.

In the meantime I guess we just do the best we can to Live in the Present and enjoy it as much as possible.

Happy Anniversary

2008-05-03T21:12:00.002-04:00

It was a year ago that I heard those fateful words, "You have MS."
Some people might find it strange to "celebrate" such a day.
But I celebrate the fact that despite living with an incurable degenerative disease, I still find so many ways to enjoy life and to hopefully bring joy to others.

I celebrate because in spite of my recent relapse I have what my doctors deem a "stable" MRI and no new permanent damage.

I celebrate that I have found ways to help other people living with MS and raising awareness and money towards someday finding a cure.

My vision certainly isn't what it used to be...and maybe I have balance problems and days where I can't walk straight. I am in pain a lot more than I wish to be and numbness in my feet and hands makes for many clumsy days.
But looking at the big picture I consider myself very lucky to be doing as well as I am. There are many people who have far worse burdens to bear than mine. There are people who have to face this disease or other horrific diseases without the amazing support of family and friends like mine.

So to all my faithful readers out there (all 7 of you...Hi Mom!) Thank You for letting me put my thoughts and fears and joys and sadness out into cyberspace and for following me on this wacky journey. The adventure is only beginning and there are many more ways to help and to fight and laugh along the way. Thank you all for being my traveling companions as I walk down my own yellow brick road of life...wearing my red shoes!
Much love,
Caroline

WalkMS 2008

2008-04-26T15:00:00.002-04:00

While the final tally is not yet in, as it stands today Team Wearing Red Shoes has raised over $13,700 is the TOP fundraiser for the Marietta WalkMS and is #3 fundraising team in the entire state of Georgia!

All I can say is Wow.

I am so honored and so humbled by the generosity of so many people.
Our entire team completed the 5k cheering and dancing across the finish line in our red shoes.

What a wonderful event it was. The NMSS did a great job organizing and planning. And I was never more proud than when Roy announced "...our top team in first place...Wearing Red Shoes!" Amazing.

At one point right before the race it was asked for a show of hands in the 900+ crowd of how many people out there were currently living with MS. I was surprised at the small number of people that raised their hands as I waved mine in the air. Then it was asked how many people in the crowd were there because someone they loved was living with MS. The cheering and clapping was deafening.

It goes to show that even with a mysterious neurological disease such as MS, I am never alone in my daily battle. I am surrounded by so many people who love me and fight with me. They pick me up both literally and figuratively! And I have never felt that love more than on April 19, 2008 when I looked down at my family and friends and was surrounded by 22 pairs of beautiful, inspiring and powerful Red Shoes.

Music, Mummies and Martinis for MS!

2008-04-24T12:50:00.004-04:00

If you live in the Atlanta area and don't have plans this Sunday night, feel free to join us for Music, Mummies and Martinis for MS!

The National MS Society is hosting a lovely cocktail event fundraiser at the Michael C. Carlos Museum at Emory University. Enjoy a variety of musical performances as you stroll through the galleries, visiting the Egyptian exhibits currently on display (hence, the mummies). Your donation includes as many trips as you wish to the martini & wine bar plus heavy hors d'oeurves.

Chris, Mom, George and I have purchased our tickets and will be there with bells on! Well, no actually I will be there with red shoes on! Gotta keep up my Wearing Red Shoes image and all. ;-)

If you would like to join us, click on the link below and then click "Buy Tickets" and your name will be added to the guest list at the event. If you cannot make it, no problem...there will be many more fun and exciting events in our future....

http://gaa.nationalmssociety.org/site/Calendar?view=Detail&id=158590

Wearing Red Shoes

2008-04-19T06:20:00.002-04:00

At a recent dinner party my dear friend Bob asked me,
"So why 'Wearing Red Shoes'? I mean, why is that your chosen blog name and now your Walk MS Team Name?"

And I thought, you know, I bet there are alot of people out there who don't know where Wearing Red Shoes comes from. Ok, maybe alot of you DO know, but it is a good story so here goes:

Once upon a time there was a little girl named Caroline.

When Little Caroline was 2 years old a movie came on television. Her parents debated whether or not this movie would be "appropriate" for a child her age. They worried certain parts might scare her. They did not know that Fate was stepping in that day bringing Little Caroline and her beloved 'The Wizard Of The Oz' together for the first time.

(And yes, she did refer to it with the extra 'The'...no one really knows why!)

She sat completely mezmerized until the credits began to roll and she asked to see it again. The asking continued for several days, until finally her parents went and bought Little Caroline her very own copy of 'The Wizard of the Oz'...on Betamax, no less!

For days...weeks...months, Little Caroline would watch her movie. Before long she could recite every line and sing every song. And then 3 year old Little Caroline decided her name would no longer suffice and she informed everyone she knew that her name was now Dorothy. But what mattered even more than the name were the Shoes. For YEARS to follow Little Caroline refused to wear any pair of shoes unless they were red. Red dress shoes, red sandals and flip flops, red sneakers...They all had to be RED.

Little Caroline dressed up as Dorothy for Halloween more times than anyone can count. She dressed up as Dorothy when it wasn't Halloween! When she was a little older her parents brought home a Cairn Terrier and they had of course named it Toto. Her favorite song of all time is still "Over the Rainbow". Her home is covered with Oz memorobilia. On her happiest days Oz has been there for her. On her darkest days it has been there too.
And when time or circumstance did not permit the watching of the actual movie, nothing made her feel closer to Oz than one of her pairs of red shoes.

My obsession with The Wizard Of Oz could fill the pages of blogs from here to eternity. The reasons I love its story, its myths and legends, its message and morals, its cast and music and so much more. But today we are talking about the shoes. There is something about a pair of red shoes that is truly magical.

Wearing Red Shoes makes you stand a little taller...

Wearing Red Shoes protects you from Wicked Witches...
Wearing Red Shoes can help you find your way home again...

Wearing Red Shoes just makes you feel like everything is going to be alright.

Less than 48 hours to go...

2008-04-17T16:44:00.002-04:00

until Walk Day!
I am so excited and pumped about all the money team Wearing Red Shoes has raised and I cannot wait to celebrate with everyone on Saturday! As of today, we have raised over $12,800!!! Holy cow!
I can hardly even believe how wonderfully generous people are. It amazes me.
Sunday we hosted our Red Shoe Spraying party and everyone's sneakers look Awesome. (Yes, Van...yours still look the best!)

It is supposed to rain Saturday morning, but the walk is Rain Or Shine so we will just be Singin and Walkin In the Rain.
Hmmm I hope that red spray paint was waterproof...otherwise we might leave a red paint trail in our wake!

Oh and our dear friends Casey & Jeff Banta in NC started their own MS fundraising team for the walk up there!
Their team name is Red Shoes Too! How cool is that? We are going national!!!!

Alright, signing off for now, BUT tomorrow I will be telling the story of how the name "Wearing Red Shoes" came to be...
So tune in tomorrow!
XOXO

Don't take it personally

2008-04-11T08:16:00.003-04:00

So remember the Spoon Theory? Of course you read it, right?
Well unfortunately spoons also represent mental energy and emotional energy...I have always considered myself very good at communication, at keeping up correspondence and returning phone calls and emails.
I used to be very good at it.

Nowadays I have a lot of trouble keeping up with it all.
I forget that people have called me if I don't write it down.
My eyes don't work enough hours in the day for me to respond to all my emails.
Or I have a series of bad days where I am in a lot of pain and the thought of carrying on a normal conversation with anyone seems nearly impossible.

So please don't take it personally if you don't hear from me promptly.
I know how behind I am on my emails...and my phone calls...and hanging out with friends.
But I do the best I can on any given day.
That is all any of us can do, right? :-)

The Spoon Theory

2008-03-29T09:05:00.002-04:00

One of the most frustrating things about this illness is that it shortens my days. A regular person gets, say 12, 14 waking hours to work, to play, to live and to love. Some days I feel like I get 4, maybe 6 hours where I can get anything done and therefore must plan each day accordingly.

I read a great story on patientslikeme.com (an online community for people with diseases like MS, Parkinsons, ALS, HIV/AIDS, etc) and I just had to put it on my blog:

The Spoon Theory:
My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college. Most of the time we spent talking about boys, music or trivial things that seemed very important at the time.We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.

She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know? I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers.

Then she looked at me with a face every sick person knows well...the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me...having MS.

I glanced around the table for help or guidance, or at least to stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the Spoon Theory was born. I quickly grabbed every spoon on the table. Hell, I grabbed spoons off other tables. I looked her in the eyes and said, "Here you go. You have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to.

The healthy have the luxury of choice, a gift most people take for granted. Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions will have. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.

I asked her to count the spoons. I explained that the spoons represented units of energy. When you are healthy you expect to have a never-ending supply of spoons. But when you have MS you have to plan your day and you need to know exactly how many spoons you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet! I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.

I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off. Showering cost her a spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MS...it's just not that easy.

I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, They Are Gone. Sometimes you can borrow against tomorrow's spoons but just think how hard tomorrow will be with less spoons. I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or a relapse or any number of things that could prove disabling. So you do not want to run low on spoons, because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to do the dishes. If she went out to dinner, she might be too tired to drive home safely without having blurred vision. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others and some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it. I handed her a spoon I had been holding in my pocket. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."

The hardest thing I ever had to learn is to slow down and not to do everything. I fight this every day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my spoons.

Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste them, and I choose to spend this time with you."

Ever since this night, I have used the Spoon Theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory, they seem to understand me better, but I also think they look at their own life a little differently. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my spoons.

Stable...yet Relapsing...

2008-03-29T08:33:00.003-04:00

Quick blog from me:
Yesterday's appt at Shepherd went as well as could be expected. They showed us my MRI from last week and deemed it "stable". There was one little spot that looked slightly bigger than last time, but not enough to mean anything or cause concern from my doctors. Yay for good news!

As for the relapse I am currently fighting, it is just going to take some time. They said maybe even 6 weeks or longer to feel completely normal again (or as normal as a person with MS ever feels!) That made me kind of mad. 6 weeks is a long time to have vertigo and mind-splitting pain in your arms. So then we changed some of my dosage around for the bouquet of wacky pills I am on to manage this pain. (Sorry folks, no exciting opiates...just drugs that only work on people with nerve damage in their brains!) Then she gave me a Scopalomine patch to put behind my ear to see if it helps with the vertigo. Being able to drive again would be a huge help. I wasn't driving all that much anyway with my stupid vision, but it really stinks feeling too dizzy to even drive the 1/4 mile to the grocery store!

So that's where we are.
Patience is a virtue.
Slow and steady wins the race.
And when all else fails, chocolate really does make things better.

XOXO

2008-03-24T18:50:00.002-04:00

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are then able to say for yourself, 'I have lived through this horror. I can take the next thing that comes along.'"
- Eleanor Roosevelt

DNR?!?!

2008-03-22T05:49:00.010-04:00

Ever since Friday morning this incident has been on my mind...
It was my first day of my IV Solu-Medrol infusion. The nurse arrived at our house, set up my IV and then we had to fill out the required pounds of paperwork. Questions range from things about my current symptoms to where am I on the pain scale to what is my official diagnosis, who is my doctor, etc etc. But then came a question that I was never expecting to hear...and it was a good thing I was sitting down. My nurse asks me,

"In the event that your heart stops and/or you stop breathing, do you want me to perform CPR?"

Chris was in the living room where he overheard this, looked up and proceeded to turn green as he ran over stuttering,
"Wha-Uh-Huh-Well-Wha??"

I managed to blink a few times and quickly spat out,
"Um, yes. Of course! I want CPR. I would like to live please."

Chris' color came back, my nurse circled Yes, and onto the next question...

But I could not stop thinking about that question on that form.

Sure, I understand if the patient is dying from terminal cancer and there is very left for the doctors to do and they are in immense pain. I understand it for people with ALS (Lou Gehrig's disease) which is also fatal, painful and increasingly devastating. They fill out a DNR order.
It is not an uncommon thing for terminally ill people, right?

But Multiple Sclerosis is not considered a fatal disease. Incurable, sure, but not fatal. So why is this nurse basically asking me if I want to be considered DNR?

That night as I layed in bed desperately wanting to go to sleep, but writhing in so much pain I was sure every nerve in both legs was dying or lit on fire...I thought, you know, I am dealing with excruciating pain for hopefully only a few days/weeks, and then *hopefully* it will go back to occasional/bearable pain. But what if I was an MS patient with constant excruciating pain? What if I was an MS patient who has lost use of both arms and legs? How much pain and disability would it take for someone to want to be DNR? What about the people that are essentially alone in their fight and don't have the support system I have (or the incredible team of doctors, nurses helping me through this journey)?

It really got me to thinking about something I heard recently: the suicide rate is 7.5 times higher for people living with MS than for the general population. There are many studies about this, and doctors debate whether it is the devastating symptoms of MS that lead people down this path OR if the intense depression often cause by Interferon (the leading treatment for MS) is the culprit OR if the depression is a direct symptom of the MS, caused by dymelination in the brain. It is enough to make anyone dizzy just thinking about it.

Now listen up people: Don't worry- this is NOT a cry for help. I have NO plans to off myself in any way, shape or form. I have so many doctors constantly assessing me for even the least little sign of serious depression. Apparently with Interferon you can be fine one day, then BAM! depression kicks in violently and without reprieve. It is why alot of people cannot tolerate these drugs. Many neurologists recommend adding an anti-depressant as a preventative measure as soon as you start taking Interferon. And on the really bad days when your body is searing with pain and walking around your own house is a great effort, falling into a deep depression might seem like a logical, even comforting choice. But that's just not my style. ;-)

I am pretty strong-willed and I think it would take a whole hell of a lot for me to ever consider something like a DNR order. And when I feel my absolute worst, here is what I do:
- I call friends and family and ask for help, be it taking me to the movies, making dinner, bringing over ice cream or sending Hallmark cards. I let people in to care for me, so I don't feel so alone.
- I get fired up about my MS fundraising. I send emails and thank you notes to supporters and solicit more supporters and I get my team fired up about walking in their red shoes!
- I write on my blog, which has been invaluable as a place to let out my thoughts and feelings, to work through them all and find peace with this crazy disease and this crazy world.

DNR? Hell. No. I've got a LOT of living to do....

Wearing Red Shoes

Into the woods

Tis the Season

We're # 1!!!

Part of My Sky

A Little Creativity

The Final Countdown...WalkMS 2011

Fun Stuff

Free at last!

Two Weeks Down

The Long and Winding Road

When I feel better...

Wearing Red Shoes...Walking for the cure

Two-Way Street

Pain Scale

The Power of the Con

Aftermath

100% Cancer-Free!

and it's not even Halloween

Father's Day

Melanoma Melodrama

Off-Roading

Post-grad

Awards Ceremony

Still Here

It's the Most Wonderful Time of the Year

The Other Shoe

"Everything Happens For A Reason"

Princess Caroline Marches On

Greg

Whatever gets you through the day

The 7 Dwarves of Solu-Medrol

Rockin for the cure

Birthday

Symptoms vs Side Effects

Even darkness must pass

GERD Your Loins

As promised...

World MS Day

Finding your zen

Seriously...WOW

My Name is Mud

Chariots & Roid Rage!

Wearing Red Shoes

Lemons

Copaxone Caroline

But your labs look great!

Awareness Fact #7

Awareness Fact #6

Awareness Fact #5

Awareness Fact #4

More events to come!

Awareness Fact #3

Awareness Fact #2

MS Awareness Week!

Play

I'm. So. Tired.

Ramblings

Good, Bad, Good, Huh?!?

No One is Perfect...Least of all Me

Happy New Year!

Old Sahara Eyes

Uninvited guests

Relapse-Land

Help is a 4 letter word!

Thankful

Blip...blip...blip

Pumpkins

Friends

Work, work, work

Quotes to share

MS September Safari

Who Are People With MS?

Pay the Piper

A Celebrity Sighting

Just Do It

*Blip*

MS September Safari

Don't Panic

Save the Date!

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