Sensory Overload

Obviously, I don't write quite as often as I used to. This is partly because the MonSter has been playing nice lately and I am rather enjoying living my life without it constantly digging its claws into me. But I would be lying if I said that was the only reason. I hate to admit it and seldom say it out loud but my eyes give me a hell of a lot of grief, all day, every day. I have adjusted and I continue to adjust to them.

You may have noticed that the culture we live in today is very much dependent on this little thing called the internet. And that we are all addicted to our smart phones and our social media and all that jazz. And while I don't spend nearly as much time on a computer as many people I know, I do like to read and send emails, see what my friends are up to (occasionally stalk people??) on facebook, check out the latest sales online, pin things on Pinterest, etc.

Between the double vision and the severe dryness, my eyes get tired very easily and when I try and do too much reading, driving, TV watching or spend too much time staring at a computer screen they get angry very quickly. It can be a total bummer, especially when I am in the middle of reading an awesome book or desperately trying to play something on the piano only to have the notes swim together on the page. I laugh when I think I actually used to work in a IT/Training Department and spent 8-10 hours a day on the computer. The thought of trying to do that now is completely insane. 

And in today's online culture, it is hard sometimes to feel like I am not missing things when I only spend a tiny fraction of my day on any sort of computer, as compared to much of the world. Then again, maybe it's not such a bad thing. It means I have to carefully pick and choose what I spend my time on. I have to prioritize my precious eye time and say no to alot of things that I would have spent time looking at in the past. And while it pisses me off sometimes, is that really such a bad thing?

An old friend of mine wrote a book recently called The Information Diet and while I am certain his target audience was not people with visual impairments, the message actually applies to us all equally. Maybe it's okay that I don't consume as much information online as a I used to. More that half of what I used to do online was "junk food" anyway. Was any of it really making me a better, smarter, well-rounded, more interesting person? Probably not.

So what if I don't graze through the amazing things on Pinterest as often as I would like? Instead I played a new song on the piano that one of my students wants to work on. No, I didn't click on that article about so-and-so and what they wore or  and I didn't read through everything on facebook, instead I drove to meet my best friend and we had a wonderful, meaningful conversation over tea.

I think like many things in life, it's about moderation. Eat what you want, just not too much of it. Have a glass of wine now and then, not the whole bottle. Spend some time on the internet, or on your smart phone, not all day, every day. More than ever, I realize the importance of taking time to 'unplug' from it all, to limit my time spent at the computer and in turn, avoid that feeling of sensory overload on my eyes and my mind. And despite occasionally feeling like I am missing out on things, in the end I hope to be a more relaxed, slightly saner version of myself. 

Another year of wearing red shoes!

WalkMS 2012 has come and gone - our team's 5th year walking for the cure in our fabulous red shoes. It was a perfect day, not too hot for us MSers but sunny and gorgeous. We had an awesome turnout and so far have raised $11,900 this year! I have a truly amazing team and such generous donors - I appreciate you all more than you know! Enjoy a few pictures from the big day! XOXO

Somewhere

No matter how many years go by and no matter how many battles under my belt, there are certain feelings that never really go away, no matter how deeply I might bury them. And it only takes a precious second for them to all come bubbling up to the surface again, as fresh and as raw as they ever were. in my case, it's usually the feelings of grief and longing for the life I dreamed I would have - the life that is so vastly different than the one I am actually living. I realize I am blessed in many, many ways. I was lucky to be born in this country, to loving parents, to have a large, amazing family and groups of friends. I was blessed with intelligence (sometimes), I am not too unfortunate-looking and I have musical gifts and talents that I get to share with people I care about.

And yet, every so often out of the corner of my eye I catch a glimpse of some life that never existed, some life that could have been a reality...if things had been different. And when this happens I cry, sometimes for days on end to the point where I am certain it will never stop. I cry for all the things I have lost and for the future which seems less bright than it used to. I cry because I am terrified of how this journey has changed me and I fear I won't like who I become if the path continues like this for years and years on end.

I mourn the loss of simpler times when among my greatest fears was having to kill a spider in the bathroom. Now I fear losing my health insurance, not being able to afford my medication and ending up paralyzed again. Well that, and the risk of a fatal brain infection from this amazing drug that I desperately need to be able to afford because it's really my only option at this point until other drugs get approved by the FDA.

I don't know many 32 year olds who have to worry about those things.

There's that old saying that if you and everyone you knew stood in a circle and threw all of your problems into the middle, you would look at everyone else's crapola and gladly take back your own problems to deal with.

Not me. No sir. I would leave all these diseases right there in that circle, take somebody else's problems and run like hell in the opposite direction.

Leave the MS for someone else to pick up. Yeah, you can have the cancer and the constant fear of it returning, too. And don't forget to take the Sjogren's on your way out - it's loads of fun in the spring when your eyes don't make tears to wash away the pollen.

I fantasize about escaping it all. I come up with creative ways to distract myself from the fear and longing and sadness. But every escape is only temporary, always far too brief and all my troubles impatiently await my return every time.

I dream of a place where there isn't any trouble.

Do you suppose there is such a place, Toto?

There must be.

Not a place you can get to by a boat or a train.

It's far, far away...behind the moon....beyond the rain...

Into the woods

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

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

Two-Way Street

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

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

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

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.