Thursday, September 24, 2009

MS Treatments - The Early Days!

Avonex, Rebif, Copaxone...oh my! Those were my choices as set forth by my neurologist at my very first appointment. Ever feel like a little kid in a lonely room with a grown up giving you choices you don't want to deal with? Mmm hmm, that was me. I remember that my previously mentioned dear friend/chiropractor was willing to make the journey to the appt with me, which was yet another moment where I was completely blown away by how caring and supporting someone could be. But I played the tough girl card. "No no...I can do it...I'm ok!" I was so not ok. I just remember sitting in that chair, wishing I was anywhere else, hoping Alan Funt was hiding behind the wall with Candid Camera and would pop out to say, "SMILE!". But Alan wasn't there. In fact, no one was. Just me and 3 boxes of medicine that I didn't want to take. As with anything, if the "do it for your kids" card is played, I'm in hook, line, and sinker. As I shook my head "no" to the 3 pretty boxes, the doctor said, "you're young, you have small children, you'd be doing this for them." Ugh...give me the once a week shot then, whatever.

Needles + me = spew! But I did it for my kids. The dr said to take it at night and on a weekend, so the side effects wouldn't interfere with my ability to go to work. So each Saturday at 11:30, I took my syringe up to the bathroom, locked my kids out, and OOOOOOOOOOOW! My first thought was...can this needle be any more dull? Second thought...One shot down, a lifetime to go! I was sore from head to toe within a few hours. Just a side effect, said the dr! With each week that went by, shot after shot after shot, the side effects were overwhelming. The all over pain and stiffness was so bad that I couldn't care for my kids, much less get to work. I decided to read the package insert. What a mistake...or not? I went back to the dr and said I was done with that crap! She got me to agree to another scan to see what "activity" may be present before we make a decision as huge as going off the medicine. Well, the scan showed increased activity. "The medicine can make it 2% of patients". Allow me to introduce myself! I'm 2%!

Since I have a general distrust of the medical profession, with the exception of dear friend/chiropractor, because she's never wrong, I decided I was booking an appt with THE best ms center in the country. Surely they would have a magic pill to give me that would make it all go away. Or maybe they'd say it wasn't ms afterall! Cleveland Clinic! Yes, I was sure the trip to Cleveland would solve all of my problems. In all honesty, it did help my marriage. My husband and I made a long weekend out of the trip and, for the first time in about a year of my being dx'd, he sat next to me to hear the verdict. While CC was nice and all, and the view from the hotel was beautiful, they didn't sneak me a magic pill, nor did they disagree with my dx. The trip was very hard on my husband, who stood at the pier and looked out over the water, crying. All 6'0", 250+lbs of him...crying. I remember not knowing exactly what to say or how to comfort him, because heck, no one knows what tomorrow will bring. So I told him to stop being a girl about it, sheesh. Looking back, I wonder how he stopped himself from throwing me into the water?

I then decided I was going to take supplements. So each day, I swallowed about 30 some odd pills. I still had a great deal of nerve pain, so I chased the supplements with some Advil. I went to a holistic dr in NJ and another in Quakertown. Eventually, I ended up in the hospital with ulcers. Crap.

I went to the sanctuary alone, knelt at the alter, and yelled at God. What exactly was I supposed to do now that NOTHING was working? No medicine, no supplements, no magic Alan Funt! I mean come on! And it hit me. I was doing exactly what He wanted me to do, draw near to Him. Now I'm not saying that everyone currently taking ms medications should throw them in the trash! I'm saying that I'm 2%...that's all.

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