Wednesday, April 2, 2014

But you don't look sick! (aka, gotta vent!)

It's all in my head. Well, yes, it is. I've never had a migraine that wasn't, though abdominal migraine exists. My AMN might have inflicted lesions on my brain, it has particularly affected my spinal cord, which is, I'm pretty sure, is attached to my brain. Which sits inside my head. Or so I've been told.

Heard about a cure/treatment? Fine. Keep it to yourself. You're really not helping, unless you drive me to and from medical and physical therapy appointments, come over and help with chores, or simply call to see how I'm doing because I hermit myself and I don't reach out to people, please just shut the fuck up.

If I'd only... What? Try this, do that? Take a pill? I take 11 pills daily for all of my various types of medical conditions. Stop taking so many pills? Okay, let's see, stop taking Synthroid for my hypothyroidism? It's actually Hashimoto Syndrome and it's an autoimmune disease. Or maybe one of my antidepressants. Which one, the mood elevator or the mood stabilizer? Or here's a hot one - how about my pain meds? Have you ever written to the point of writers cramp, or run and had pain in your side or shin splints? Try having that, every minute of every day of the rest of your life.

At least you won't die from it, right? Wrong. Migraneurs have a 40% greater chance of having a stroke than the general population. My grandmother had AMN symptoms, albeit mild. She died from having Alzheimer's Disease. I've heard, "People don't die of Alzheimer's." Okay. Alzheimer's Disease makes Swiss cheese of the brain. So how do they die?

There is no upside to AMN or migraine or depression or hypothyroidism or osteopenia. My Uncle Bill was cursed with AMN. At first it was misdiagnosed as MS, but that was common in the 80's. Yet his spinal fluid showed no signs of that autoimmune disease. It wasn't until a random doctor put together his symptoms with his younger brother, Stuart's ALD, that the puzzle pieces came into union. Wow, ALD/AMN! We had a name for this monster! Well, then Bill decided one sunny morning in June 1997 to go out onto his back deck and blow his brains to smithereens. Is that up? I've decided that it's out, all over. I can't hear the expression about blowing one's mind without thinking about him, at least for the narrowest of seconds. If I ever get my book written, the title I've come up with is "Live Through This." Get it?

I admit to being eerily aware of my own fatality. I don't dwell on it, unless it's the quiet time of night when most sane, healthy people without insomnia are asleep. I get to the point where I think about my boys going on without me and I stop. It's making me panic just discussing it.

Okay. The soapbox is gone now. It's just me, simply complex, complexly simple. I've done a lot, said a lot, sowed a lot of wild oats. Are my medical conditions some sort of punishment for some past indiscretion? I tend to think of myself as a good person, but human nonetheless. I blame my genes. And not the 501s! (Like I could ever fit into another pair! Ha!) Naw, it's the ACGT code, carried by my foremothers (ALD is X-linked remember), past countless years over countless borders wide and small. I'm so not perfect, but who is?

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