Seanan McGuire (seanan_mcguire) wrote,
Seanan McGuire
seanan_mcguire

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Invisible conditions and the hyperkinetic author.

This is National Invisible Chronic Illness Awareness week, which is something I consider to be genuinely important. We're an appearance-based society, to a large extent, and "you don't look sick" is a far-too-common statement. talkstowolves has posted about her experiences living with temporomandibular joint dysfunction (TMJD), as well as a variety of other conditions. It's very eye-opening. Meanwhile, jimhines has posted about the frightening financial realities of diabetes.

I don't have an invisible chronic illness. What I have is an invisible chronic disability. At some point during my early to mid-teens, I managed to severely herniate three disks in my lower lumbar spine (L3-L5, for the morbidly curious). Because I was extremely overweight at the time, every doctor I saw for more than ten years said "lose weight and the pain will go away," and didn't look any deeper to see why a twenty-three year old woman was staggering into their offices screaming whenever she put her foot down and unable to straighten without vomiting.

Because the body learns to cope with things, I eventually recovered enough mobility to decide to do what the doctors were telling me, went on Weight Watchers, and lost over a hundred pounds. This wasn't as hard as it might have been, because I am a) a naturally picky eater and b) naturally really, really, "was walking a mile every morning to the convention center at the San Diego International Comic Convention, because that calmed me down enough to move calmly through the crowds" hyperactive. So "here, eat lettuce and do aerobics," not exactly the most difficult thing I'd ever heard.

Sadly, it turned out that the doctors were wrong. Being severely overweight may have made things worse, but it didn't cause the injury, and a year and a half of hard aerobics definitely made things worse. In the fall of 2007, I began experiencing numbness of my right side, culminating in losing all feeling in my right leg and nearly falling into traffic when I suddenly couldn't walk. That's when a doctor finally slapped me into an MRI machine, went "oh, crap," and started dealing with my actual injuries.

I look totally healthy. I walk quickly. I move sharply. I am 5'7", reasonably young, and apparently able-bodied. But sometimes I sit in the "people with disabilities" seats, because I literally can't stand on the train for the duration of my commute. Sometimes I glaze over while I'm talking to people, because my sciatic nerve has started screaming like my leg is full of fire ants, and I'm trying to figure out a polite way to excuse myself to go take painkillers. Sometimes I keep walking at a crazy death-march pace because I can feel the numbness creeping back, and if I don't get to my destination before I lose the temporary use of my leg, I'm going to be stuck. That's just how life is.

We may eventually pursue surgical solutions—right now, I'm doing physical therapy, restricted forms of exercise, and trying to work out a detente with my own limitations. They aren't bad enough to qualify me for full-time disability, just bad enough to be inconvenient, invisible, and keep me off roller coasters. Sometimes I meet people who blow off my limits as "whining" or "being lazy." They don't stay part of my life for long.

So please, this week, and every week, remember that appearances are deceiving; like books and their covers, you can't judge a person's health by how fast they're moving. They may just be outrunning the collapse.
Tags: contemplation, medical fu, state of the blonde
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  • 165 comments
Aww, it stopped working? I feel sad for you.Really, that drug changed m life. I was on Flexeril for over a year before my husband was prescribed Soma for a herniated disc, and I decided to take one to see what it did -- and I literally ran to my doctor's office, patiently (hah) explained why I thought I should take the drug, had a two-hour discussion with her (we're very close), and finally promised her to check in now and then. I feel like a completely different person while I am on Soma. It didn't do much for my husband other than help him sleep, but it did the most wonderful things for me. Then I found out that people with cerebral palsy are often prescribed Soma. So, hey.

Oh, I also am big on herbal supplements; I was raised that way and I do a ton of research. Have you tried Valerian, Passionflower, Magnesium, and L-Tryptophan? You may need to take large doses, but I have found that the combination works in some way for many people. They should be okay during the nursing period. How long do to plan to nurse?
Plus, with IBS-D, lots of stuff irritates the digestion. So yeah, I hate trying new stuff. I will, but after I finish nursing.
Oooh, I'm so so sorry! Not even probiotics and fiber helps? That really really sucks. I don't have IBS, thank the gods, but I do have digestive upset if I eat too much of certain foods. Thankfully, I can stave it off with probiotics and psyllium husk and apple pectin and bentonite, but I feel like reaching out to try and help others who can't find good relief.
No, fiber makes it worse. Probiotics don't make much difference at all. Bentyl helps, but I can't take that while nursing. So I just use generic Immodium as necessary. And know where all the bathrooms are, of course.