Saturday, April 16, 2016

20+ Years of Multiple Sclerosis, Part I

I'm starting my timeline in September of 1994. This was the first time I'd experienced what I years later came to know was called optic neuritis. I had recently had a baby girl. I needed to return to work a few months afterwards. I always loved working - I loved my job. I'd thought if I had a child one day, I'd go right back to work and figure out childcare and that would be that. Seemed like what everybody at my income level did. I didn't think I had the luxury of not working, and why wouldn't I want to work anyway? :-) 
When it came time to go back, I realized there was no way I was gonna go back full-time right away. I couldn't leave her. I negotiated and negotiated with my management and they would not agree to let me work part-time. I left the job that I loved. I offered my services to another local campus of the university that I worked for, on a part-time basis, for six months. The downside, aside from the loss of income, was a much longer commute.
One day as I was driving into the city to work, I noticed that I could not see the exit signs on the highway. I kinda figured out that I could look out of the corner of my eye and then I was able to see it, and read it. It was as if I could see using my peripheral vision, but not when I looked directly at an object. I absolutely did not understand this at all. WTF? This must be some weird after pregnancy thing. I didn't remember reading anything about it in the 'manual' ('What To Expect When You Are Expecting' had recently been published.) After two weeks of this, I decided I must need glasses or something. Didn't know what. I was 34 and had never needed even reading glasses. One day, I walked over to a glasses store near my office. The optician gave me some kind of basic eye test and told me he didn't know what my problem was. So weird, I thought. How could he not have encountered this before.
After another week, I made an appointment at a medical center in the optometry department. I thought for sure these guys would be able to figure it out. They tested me every which way they could. And yet, they couldn't tell me what the problem was. Well, screw those people, I thought. I was starting to notice that there was pain involved, and that it was now happening in both of my eyes. I could not look directly at lights or I'd have what felt like a blackout for several seconds.
I dealt with it. Kept driving, kept working, kept taking care of my baby. In about six months, it started to diminish and soon it was gone. Well, mostly gone. It felt like there was residual stuff left over. Still couldn't look at lights or see very well at dusk.
Four years later, I had a baby boy. A few months after his birth, the same thing happened, again. Wtf?? Why is this happening again? I now lived in a different neighborhood with my husband and two small children. I decided I'd just deal with it. However, something new had shown up in the world since my first baby. And that was the World Wide Web! Now, I could research things myself, which was my style. I was an ABD in sociology from the University of Chicago - I knew how to research. I soon learned that my vision condition was called optic neuritis. And then I read that something like 70% of people with optic neuritis have another condition called multiple sclerosis. MS? I'd heard of it. Didn't know anything about it, and couldn't remember if it was the same thing as the Jerry Lewis telethon disease. I started reading about MS.
Hours later, I knew in my gut that MS was what it was. What I read described things I'd experienced in my body for years. Crazy stuff that I couldn't explain, but chalked up to being batshit crazy or something.
I decided that I needed to find a doctor that I could trust, and who would believe what I was telling him or her. I did a little research and picked an internist in my town. I met with him, and told him my story, and asked him if he would help me get it diagnosed. He told me I'd made a pretty good case for myself, and that he'd be happy to guide me through it. So we did the things. The worst being the lumbar puncture - of course, I had the famous 'spinal headache' for a week afterwards. One of many times I learned what I came to call 'trrish's law': if there is a side effect, you will have it. I attended meetings at work that week by lying on the floor. Laying down was the only way to get the head pain to subside. That's the kind of person I was then - work and children were more important than my health or my sanity. 
One evening I was in my kitchen and the phone rang. It was Dr. Pearson, who said "Trish, I have some good news and some bad news. The good news is, your intuition and research skills are very, very good. The bad news is, you do have MS."
I was relieved and terrified all at the same time. I bet if you are reading this, you might know that feeling. Having a fact-based explanation for the things that had made me feel c-r-a-z-y was awesome! Having MS? Not sure if that was so awesome. 
My next step was to go see a neurologist in my local town.....

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