Wednesday, April 22, 2009

My Name is Mud

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

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

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

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

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

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

Sunday, April 19, 2009

Chariots & Roid Rage!

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

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

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

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

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

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

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

Tuesday, April 14, 2009

Wearing Red Shoes

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

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

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

Its not too late to join our party this Saturday, April 18th:

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

Friday, April 3, 2009


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

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

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

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

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

Wednesday, April 1, 2009

Copaxone Caroline

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

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

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

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

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

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

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

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

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

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

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

Or as normal as I ever feel! :-)

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

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