I cherish my kids' youth, my sleep, and my 20 minutes of television before I fall asleep each night. :-)
Saturday, April 16, 2016
20+ Years of Multiple Sclerosis, Part II
By now, I've met with three neurologists. I learned a few things about them as a species. They are either slackers or very sincere, caring and hard-working, if you'll excuse my sweeping generalization. The first one I saw fell into the slacker category. He was in the smaller community I lived in outside of Boulder. "Yes, you do have MS. You don't have to go on any medication until it gets much, much worse." I left.....wondering. I didn't like him. And I didn't believe him. I made an appointment with a neurologist in Boulder. She was much better. She was older - she ended up retiring a few years later. I told her I was looking for a second opinion. She met with me for quite a while and looked at all my tests. She then sat down right next to me, and very gently and sweetly said to me, "trrish my dear, I don't think there is any question that you have MS." In that moment, I truly accepted it. Then she said, "I think you should go on Copaxone immediately." Which I did.
One day maybe 6 months later, I'm making soup in the kitchen and the phone rings. It's a woman's voice and she identifies herself as Janice, from Dr. John Corboy's office at the Rocky Mountain MS Center. She asks for someone I don't know. I say, "you know, I think you have the wrong number, but weirdly, I was recently diagnosed with MS. Who's John Corboy?" She then gave me 5 minutes about how he was the best MS doctor in the state of Colorado and I HAD to come down to south Denver and see him. And I made an appointment with her right then over the phone. Thank you, universe! Getting involved in with that clinic was one of the best decisions I made around MS. The clinic is part of the university I work for, although over an hour away from where I lived.
By this time, I was starting to become a slacker myself with the Copaxone. My abdomen was my favorite injection site, but after six months it was black and blue and all sorts of weird things. At the time I had very thin arms and couldn't tolerate injecting myself there. Plus, I was doing these freakin' daily injections and still having exacerbations right and left. And I 'kept' symptoms. They didn't all resolve after an episode. By this time, I was skipping maybe a day every week. When I met Dr. Corboy, I was completely honest with him about it. He was the senior guy at the clinic back then. The first meeting, he flat out told me "you are going to be in a wheelchair in 5 years if we don't find a better medication for you." He scared the crap out of me! He said, "if you were my wife, I would beg you to try and find a medication you can tolerate." The choices weren't that great, but at least there were choices. I had a history of depression, and he felt that the betaserons were too risky. I secretly wanted to try them, primarily because the injections were only 3x a week. Because he felt I was moving into SPMS, he recommended Novantrone, which was relatively new (for MS) at the time. Basically, chemo for MS. Now MS was really starting to get my attention.
I had met with some of my friends and told them about the diagnosis. I'd initially reacted like "shit, I'm gonna have to do everything I ever wanted to do RIGHT NOW." Like climb a 14'er. Or go see as many shows as I could of my favorite band (The Who.) It's a natural instinct, but not a sane way to live. When I got the chemo news, I was in the middle of an episode where I was literally numb from my shoulders down to my knees. I could still walk - it seemed like primarily a sensation thing, but was then began impacting my GI tract, bladder and bowels. I thought, ok, this is getting to really be a bummer. The thing I always hated was that I didn't know what symptoms were gonna decide stay and what weren't. I decided two things: 1) I'm getting that tattoo I always wanted. I'm numb anyway, what the heck? And 2) I'm going to see a bunch of Who concerts this summer. Girls with MS just want to have fun.
I did both of those things. Spent money I didn't have. Irritated my husband. Brought my family along for the ride for part of it. Had some great fun, and wore myself completely down. (But still love my tat!) The Novantrone turned my pee blue and made me sick as hell. AND screwed up my ability to fight infections and I had an omnipresent UTI. I was miserable, not just from MS, but from the chemo.
Then I began my first of many, many breaks with western medicine. I wasn't happy with what my choices were. I knew Dr. Corboy wouldn't be happy. And I told him - I'm quitting Copaxone. I've got to go out and try some other things. I may be back. He said "I'll be here for you." I liked, and still like him. I used to joke about him being "John Corboy, celebrity neurologist!" Because he was always showing up in magazines and interviews and such.
So I went on my way to find out...what does alternative health offer that could help with MS?