Tis the Season

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!!!

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

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

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

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

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

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!

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

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

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...

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

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