Saturday, November 27, 2004

An MS Adventure: How I Got Started On This Crazy Trip

The neuralgia has gone from excrutiating to absolute torture. The kind that should be outlawed by the Geneva Convention.

I can't speak. I can't eat. I can't sleep.

I can't do anything, but feel the pain.

I watched a Law & Order: SVU episode tonight about a woman with a chronic illness who wanted to commit suicide. She didn't want to be in pain anymore.

Have I thought about suicide? Sure I have. I'd be lying through my teeth if I said I didn't. I think nearly everyone with a chronic pain issue has at least thought about it. I've never seriously considered it, though. My kids and my husband love me too much, and quite frankly, I don't want to fuck my kids up by forcing them to grow up knowing their mom offed herself. But I do completely understand those who do think seriously about it, and those who go for assisted suicide. I voted for Oregon's assisted-suicide law, and would do so again. I watched my mom die in horrendous pain; we as a society wouldn't allow a dog to die that way, but if it's a person, let 'em suffer? No thanks. And when my time comes? I don't know. I'll cross that bridge when I come to it....which hopefully won't be for another few decades or so. God willing.

Last night, while up all night and surfing blogs, I happened by a few dealing with MS. One in particular caught my eye: MS Not Just a Diary. This blog is relatively new, and authored by a man in England named Dave who was recently diagnosed. I applaud his bravery; I don't think I could have blogged during my initial days of knowing what the hell was wrong with me. I truly believe Dave's blog could help people going through the same thing. I wish it had been there when I was first DX'd.

Dave's blog had me thinking about when I first got sick, and when I first got DX'd. It's a long story, but what the hell. It's my freaking blog, so I'll tell it.

I first noticed something was different shortly after my daughter Wren's birth. I was having balance and coordination problems. I'd stumble and even fall, as if I had been drinking, which was certainly not the case (I was nursing). I also began to note that I was having memory problems, and had completely lost my appetite. Despite my not eating, I began to put on a shocking amount of weight. I went from 160 postpartum to 320 in less than a year.

By the time that first year was over, my life was completely changed. I went from being the kind of person who thought nothing of walking several miles to one who couldn't walk from the bed to the bathroom without help. I had fatigue in a way I never even knew was possible. I remember very little from that first year, and that is probably a blessing. Bits and pieces come back to me: I remember brushing my hair, and the weight of the hairbrush causing my arms to burn and shake as if it were a hundred pounds. I remember being so nauseated, that everything I ate came right back up. I remember waking in the night with horrible leg spasms, like charley horses to the nth degree. I remember being so weak, I was afraid I was dying.

And the pain. I definately remember the pain.

That first year was when I contemplated suicide quite often. I was in so much pain and completely bedridden. The doctors couldn't figure out what was wrong with me. More than one told me it was "all in my head" or blamed it on postpartum depression. I knew in my heart that something was desperately wrong. I knew it wasn't in my head. So I kept trying, hoping that eventually I'd find a doctor who knew it, too.

I became very depressed. And frustrated, because now I had to explain to doctors that I wasn't sick because I was depressed, but depressed because I was sick.

I eventually found a doctor who ran some tests and discovered why I was gaining so much weight: my thyroid had failed. Finally, an answer! But unfortunately, not THE answer. The thyroid replacement meds helped me to stop gaining weight, helped me to be a bit more awake, and helped me focus a bit more. But the dozens of other symptoms lingered, and in many cases, kept getting progressively worse.

I began to get infected and sick from damn near everything. It seemed like my whole body had turned against me. I caught every cold that went around, including getting the chicken pox TWICE that year, despite the fact that I'd had a pretty severe case of it as a preteen. I developed pneumonia. My gallbladder became infected and had to be removed; the surgery caused an infection which took weeks to allieviate. I had some gynocological surgeries as well, each of which caused infections despite massive amounts of antiobiotics prescribed both before and after the procedures. Although it was horrible, it provided the first clue to what was causing my health meltdown: my surgeon asked me if I had been evaluated for autoimmune disorders. I had not. He also suggested I be evaluated for neurological conditions, particularly as I had woken up from one surgery with a silver-dollar-sized patch on my leg that had absolutely no feeling at all. That patch has now grown to encompass a third of my leg; I will eventually lose all feeling in that leg entirely.

I took the surgeon's advice and asked my PCP about it, and he shrugged it off. He was still under the impression that I was depressed and/or mentally ill. He kept sending me for psych exams; I had five, and all reported that I was in good mental health.

Into year two, a tragedy struck: I lost my beloved mother to breast cancer.

Her death sent me into a very deep depression, and I relented and began taking antidepressants. I took them for six months. There was no difference in my symptoms.

Step two, however, occured very shortly after my mom's death: I was diagnosed with the rare condition trigeminal neuralgia. That was the cause of the pain in my face. There is no cure, and not even really a good treatment. All you can do is try to treat the pain. I haven't had much luck with that.

My doctor's refusal to see my other symptoms as legitimate caused me to go to the library and do my own research. I made a chart of my symptoms, and went to work. For each disorder I came across, I would write it on the chart and make checkmarks of the symptoms I had that matched. I did this for three days.

At the end of the three days, my husband and I looked over the data: there was one disorder with all the symptoms checkmarked: multiple sclerosis.

I was in shock, and immediately assumed that I was in error. I went to the library to read up on MS. By the end of the day, I knew in my heart that what I had was indeed MS. The stories I had read....they were me. They were just like me.

I cried and cried. Some of the tears were in relief, that what I had, had a name. That I wasn't crazy after all. Some of the tears were in horror: I had an incurable chronic disease. And some were in pity: I kept seeing myself in a wheelchair. Never dancing at my son's wedding. Destined to be pitied by those who saw me struggle. I couldn't believe it was really happening to me.

I took my findings to my doctor. He quite literally LAUGHED at me. Told me I was being "silly." Then he ran some neurological tests...and stopped laughing. He put me on some meds to treat symptoms of MS: specifically, Baclofen and Amitryptiline. He sent me to a neurologist, who gave me the diagnosis of "probable MS." The neurologist suggested I get in touch with the National Multiple Sclerosis Society. It was the best advice I'd gotten thus far.

I don't know what I would have done without the MS Society. I don't know if I could have gotten out of the depression caused by my mother's death and my DX within three months of each other. I can't recommend them highly enough. Their program for the newly-diagnosed was invaluable to me. I learned that there is so much more to MS than that dreaded wheelchair. And that the wheelchair wasn't something to dread after all.

That's not to say that I don't get depressed anymore. I do. Sometimes, I get overwhelmed by it all. And when I'm in pain, like I have been this week, it's hard to see any light at the end of the tunnel. Hell, it's hard to even see the tunnel.

But I've learned that it could be worse. As long as my name isn't in the obituaries, it could be worse. I've also learned that you can either be afraid of living and thus unable to live, or be unafraid to live and enjoy your life while you've got it.

And in some ways, MS has made me a better person. I don't take things or people for granted so much the way I used to. I've learned to prioritize my time, and how to relax (which is something my ultra-hyper pre-MS self couldn't seem to manage). I've learned who my real friends are; it's sad that so many people are fair-weather friends, and drop you like a hot potato when something serious like MS comes along. On the other hand, the friends that did stick around are worth their weight in gold. And I've learned that the vow "in sickness and in health" can also mean "in chronic sickness and rarely any health" and be just as strong, just as meaningful.

It ain't all bad. Now pass the Vicodin, please.....


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