Tuesday, April 29, 2008

Getting My Life Back

The enormity of the news that I will be enrolled in a program to be amongst the very first people in the United States to have access to
Cimzia is starting to hit me. I have had two calls from the Pharmaceutical Company in the last two days, assessing my history and lifestyle to incorporate into their trial data; they tell me it's a matter of days before I get a call from the pharmacy itself to arrange shipment of the medication and home visit by the Nurse Practitioner. According to the studies, there was a 61% favorable response rate to this medication in trials held in Brussels (539 patients, and I love Brussels Sprouts) within 6 weeks, and 39% of them went into remission. This is just in the first six weeks.

As Dr. V- explained the drug to me, it is very similar to Remicade which I have taken in the past with adverse and very serious side effects forcing me to withdraw. Apparently, the molecules of the drug are in the shape of a Y with the favorable antibodies at the ends of the top like hands. The part of the drug that they believe causes the bad reactions in many patients are on the stem of the Y. In the case of Cimzia, the hands are cut off from the stem and then bound to another molecule that does not provoke the same response. Patients like me who's IBD responded well to Remicade but who could not tolerate the regimine are prime candidates for Cimzia.

For the first time almost since I was finally diagnosed with my Crohns Disease (my early 30s although 20-20 hindsight says that I was suffering with it, undiagnosed, from age 15 on), I have hope. More than hope. I have a feeling about this new drug. Like it's going to be the answer to my dreams and my living nightmare. But that leaves me with a disquieting feeling that's bringing me to tears. Am I ready to be healthy?

This is not as crazy a question as it sounds like at face value. Think of my (and many of my readers) weight issues. I went for almost my entire life, childhood and adult, obese to morbidly obese. When, five years agoo I found my way to Richard Simmons and Slimmons, my identity was wrapped up in my size and appearance. The Weight Loss Journey, while on the surface a very positive thing, has been agonizing. It's hard to adjust to the new reality. Social interactions are not what I thought they were. I started to understand why the obese are discriminated against and it's not about appearance. Flirting with the opposite sex, and ultimately a serious relationship was an outcome. Other's expectations of me are high now, and my expectations of myself are high too. Often, I don't even know who the person staring back at me in the mirror is these days, and am dumbfounded at the things I say and do.

It's been a very positive experience, but I fully understand why my friends with weight don't just change up their lifestyle and lose it. It's been one of the most scary journies that I could ever imagine going on. And this journey gave me years to adjust to the new reality.

Another basic component of my reality is that I'm sick. At times, critically sick. It's stunted my career as well as my personal life. Opportunities that others take for granted to me are denied. Even something as simple as going to the market or the movies or even a short walk around the block is fraught with danger of medical issue and embarassment. I never know what is going to happen and when. I am always fearful of going out and trying new things.

And now the possibility lays before me that these limitations may be removed from my physical being within two months. How do I cope? It's as big a change as the weight loss. But without time to get used to it.

Do I go back to my old career? And if yes, is there even a career to go back to? How long will the drug work for? And how bad will it be if I relapse?
Will it be years - as it has been adjusting to my appearance - before I adjust to the idea that I can go out without fear? And without the illness as a basis for my operation, will I be able to meet others (and my) raised expectations of me?

Big, scary stuff. Not enough to stop me from going forward with this amazing opportunity, but bad enough to cause me nightmares.

I only hope that I have learned enough about my own capacity to adjust in the past years to see me through.

1 comment:

Doll Creelman-Migliaccio said...

Change is definitely scary. What a wonderful opportunity for you to heal . Wishing you great success in the coming weeks. Know that I'll be here cheering you on!

I admire your courage and determination! You rock!



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