Friday, December 28, 2007


According to the medical minds of today, there are four types of multiple sclerosis. I am blessed to have the "Relapsing-Remitting" type. I have periods where my health and symptoms stay more or less the same, and I have periods where new symptoms may appear and/or old ones may worse and/or more damage to the CNS (central nervous system) may or may not be done. Sounds pretty uncertain and unpredictable, doesn't it?

So how do you know if you are having a "relapse" or as some prefer, an "exacerbation"? The general rule of thumb is if you have a new symptom (or worsening of old one) that lasts more than 48 hours, call your neurologist. That still doesn't mean anything...for certain (here we are, back to the color gray!!!) but it means it is worth taking a closer look.

So by Thursday (2 days after Xmas) when both feet have been numb, I am having new weakness in my hands and legs, the chest tightening is worse, my balance is waaay off and I am having dizzy spells (while stone cold sober!) for over 48 hours...I call the doctor. Turns out that if your body has recently fought off an infection or virus, MS gets really pissed off and acts like a rebellious teenager. The nurse was not surprised to learn I had a nasty chest cold less than 2 weeks ago and was now experiencing some trippy new/old symptoms. I am on watch until Monday. If things worsen or have not improved by then we will consider magic wonder-drugs to kick MS back into gear.

To further infuriate me, last night at 10pm and then AGAIN an hour ago the old right foot decides to mess with my head (or is it more accurately, my head messing with my foot? hmmm) I actually made Chris take my sock off so I could see for myself that my foot was not covered in fiery thumbtacks. I hoped that the visual would ease the pain. It did not. A double dose of anti-convulsants used for neuropathic pain did help.

So I sit here on Night Two of Burning Foot, still off-balance, dizzy spells abundant, still dropping things unless I really concentrate and use both hands and I wonder IS this a relapse? My MRI was so clean! I can't be getting worse already? It is too soon. My brain was so pretty on the scan. I wish my skull had a zipper and I could peek in and have a quick look...though, really what good would that do me? If I am getting worse then I am getting worse. I can't stop it. I can try my damndest to slow it down, but I can't stop it.

I can only do the best I can do today. And I really need to start recognizing my own limitations a little better. ONE major event per day is all I can do now. If tomorrow is my dear friend's birthday and I plan on being at her dinner party, then I can't go to Lenox on a shopping spree all day. Old Caroline could, perhaps, but my New Year's resolution needs to be letting her go and accepting that I am not Superwoman and this newly brain-lesioned body cannot do all the things I want it to do. And it really stinks and I hate it; but I also want to enjoy the things I DO get to do, which is still alot of amazing things with some pretty extraordinary people. So I have to take care of this immune-suppressed-jacked-up body of mine and be nicer to it and stop trying to make it something it is not. It reminds me all of a quote from Richard M. Cohen's book, who also has MS:

"We all need to appreciate ourselves for what we are and stop whining about what we are not. I grow weary of wishing so desperately for something else. Those concerns find no resolution. All I can do is what I can do. There are no cures out there, and there can be no illusions of health getting better. I do dream of living something better. There is peace of mind out there somewhere. That calm may take years to find, but its promise carries me beyond regions I otherwise would visit. To dream is to fly. Dreaming is rising above pain, believing that life will be better, no matter what the physician decrees."

And with that note I will make myself some herbal tea, perhaps draw a nice, not-too-hot bubble bath, listen to a favorite CD and be nice to my body in hopes it will return the favor tomorrow so that I may enjoy time with my friends.

However damaged and rebellious it may be, it is the only body I have. I need to appreciate it for the many things it allows me to do and try harder not to focus on its limitations.

Saturday, December 8, 2007

Try To Remember...

Losing control over my body and it functioning "normally" does not really scare me. Sure, I wish I didn't have brain lesions and an unpredictable, degenerative disease. I get angry. I get sad. I grieve the loss of my health. But the thought of not being able to walk without some type of mobility assistance does not scare me. My vision never being normal and/or getting worse does not scare me. Any of the things that could potentially happen to my body - none of these scare me. They would make me very angry and very sad, but I can honestly say I am not afraid.

Stress, fatugue, aging...all these things can affect our bodies and our minds. Who hasn't lost their keys? Or completely forgot someone's name? How many times have we all said, "I think I am losing my mind!" as an expression of frustration. Haven't we all called something a "thingy" or a "whatchamacallit" because we simply could not remember the item's name?

It is well known that stress and fatigue exacerbate symptoms (even if you don't have MS) and I have gotten used to my legs being more tired or my eyes not working as well during times of high stress/fatigue. But in the past 10 days I have had more "cognitive issues" than ever before.
And it scares me.

At what point does an MSer realize and admit they are really having problems, cognitively speaking? When they lose their keys...for over 4 days? When they have no recollection of a particular conversation with someone? When they completely forget an important meeting? Or their social security number? When they all of a sudden can't remember the words to one of their favorite songs?

For someone who is a natural blonde and enjoys self-deprecating humor, it is easy to just laugh it off. Meanwhile, underneath my wicked & witty sense of humor these little moments terrify me. Not in and of themselves, but for what they might be foreshadowing...

If I end up using a cane or even a wheelchair...I am still me.
If I lose my vision, partially or completely...I am still me.
If one or both of my hands no longer work...I am still me.
If I need to take naps during the day...I am still me.
If I sometimes walk around looking like a drunk person because I am dizzy and my balance is off...I am still me.

But what happens if I forget people's names and birthdays, or can't think fast enough to read all the notes on a sheet of music, or get easily confused by simple instructions, or lose my stellar sense of humor because I can no longer think on my feet fast enough to dish out amazing one-liners and comebacks? Am I really still me if my mind doesn't work like it used to? Will I still be funny and interesting to be around?

I finally found my keys and eventually remembered my social security number (after a good night's sleep!) My husband kindly re-walked me through the conversation I had forgotten. Nevertheless, these things bother me, perhaps more than I want to admit even to myself.

But what is there to do? I take my extra vitamins prescribed by my neurologist, I do crossword puzzles, I try and stay active mentally and physically, I do my injections on the Wonder-Drug and I stay the course.
Above all I try and keep my sense of humor.
Because sometimes laughter truly is the best medicine.

Sunday, December 2, 2007

Shades of gray

I love the colors black & white. I love their simplicity.
There isn't any question with black & white. No one says, "Hmmm, is that color blue or is it green? Maybe its aqua? Or teal? Blue-green? Green-blue?"
Black & white are easily recognizable. gray is an entirely different story.
While gray is a product of these two simple colors, gray is not simple. It brings up many questions and it isn't always easy to recognize.

People ask me all the time how I am doing, how I am feeling. It is wonderful to have so many people that care enough to ask and at the same time I feel guilty when I answer with some variation on, "Could be better, could be worse." I want to be able to tell them I am all better, that my vision is back 100% and I see things exactly like I used to, that my legs never give out on me, that my hands work just as they always have, that I never feel any pain and I don't ever get dizzy.
I want it to be black & white.
But MS is more gray than I ever imagined it would be and it frustrates the hell out of me.

Learning to live with gray is a slow process that I have not yet mastered. It takes patience. It takes time and a lot of perseverance. It takes acceptance.
My vision is gray and may be for a long time. It is not back to normal and I compensate in a hundred ways on a daily basis and I get by. I (usually) see better in the mornings but not always. My "magical" glasses help me see to drive most of the time, but often even they don't do the trick so I put them away and try again later.

Gray can be ambiguous and depressing, frustrating and dreary. It gives more questions than answers and at times it seems to spread so rapidly, taking over everything like a fog rolling in.

In those times the only cure is putting on some fabulous red shoes.
Red beats out gray any day of the week.
Red dances and stomps on gray's face.
Red is powerful.
Red is full of heart.
Red never gives up and seldom fades.

I love the colors black & white.
Though I like them best with a healthy splash of red.