Post-grad

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

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

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

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

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"

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

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

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

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

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

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

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

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

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

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

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...

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

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

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

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