I just had to type this out SOMEWHERE, although I feel horribly guilty for airing my unhappiness about this. There are countless people with far worse diseases than I, and mine probably won’t even kill me. Having nobody to say even minor complaints about too is a bit tiresome, however, so I need a little grumpy jabber time.
My hypothyroidism annoys me. I’m already taking 150mcg of thyroid medicine, and still may not be high enough (although thankfully now I don’t crave salt all the time and sweat for hardly any reason). My mother, while she tried to get me tested for it when I started showing symptoms around age 9 or 10, the physician refused to test me for it despite having symptoms and a very strong family history of it. Going to another doctor to request a test apparently never crossed her mind. So I ended up untested and untreated for several years, during which my weight ballooned. I had been formerly somewhat underweight, then was fairly overweight in the span of a few years. No problem, I’d think. If I was more normal. I eat little, and hate salty, greasy, fatty or sugary foods, and rarely eat a lot of carbohydrates (I like potatoes a little too much though). I limit my calories as much as I can, too. The weight doesn’t leave though.
I have some horrible myriad of joint disorders. I have some extent of arthritis, so my grip can be fairly poor, and my joints can seize up and ache very very badly for hours. I have a ‘growing pains’ knee thing, where during growth spurts, a tendon gets terribly sore and makes even walking killer. (I had to wear a full-leg brace for a few years due to it. Talk about messing up your childhood, that thing made me lose all of my friends along with making me a bully target. Plus it was a huge foam and metal thing, and living where we were in southeast Texas, well, I was overheated most of the time. But it did teach me how to go up and down stairs without bending my knees, at least.) I have a chronic problem with achilles tendonitis, apparently, and a bone shard in my ankle that works itself loose (at least, so the bone doctor told me) every few years when I trip and hurt my ankle really bad.
Of course that’s not all. I can’t remember the name of it since it’s been several years since it was directly brought up, but I have some thing, possibly ANA-related, where the little cushions between the joints wears down excessively. I know that’s a common sports problem. But that manages to give me nasty pains sometimes, it seems, plus I’m not sure that there’s even a fix for it short of surgically implanting fake ones. And since this is in many (or all?) of my joints…well, that sounds kinda expensive. But again, I haven’t particularly remembered this for several years, so I don’t quite remember much other than that it will cause me major pain in the years to come, particularly if I am overly active.
Well, crap. All of the home exercise things I’ve tried have failed quite badly. Normally within 2 weeks of starting up a program, I put out my back, partially dislocate my hip, do whatever to my knees that makes them wobbly and liable to suddenly being unable to support myself so I fall down. I’ve gotten the most success out of an exercise bike, but even taking it very easily, I suffer some stupid injury that prevents me from continuing for a week or so. And apparently eating healthily and taking thyroid medicine to keep my metabolism going isn’t helping enough.
I’ve got some small (amazingly, considering my family history) mental disorders, like little phobias, and Tourette’s. I like the Tourette’s though…so no complaints. No major depression, just the normal tiny few-hour, once-every-few-months depression everybody gets…no psychoses, no social ineptness, no learning disabilities, which are all so amazingly common in my family history. Guess I needed some positive aspects. Heck, I’m thankful that I don’t have schizophrenia, sleep apnea, or diabetes, or any heart or cholesterol problems, which are again rampant in my family history.
Ah, but that anti-nuclear antibodies (ANA) thing. I loathe you. I really really hate having fibromyalgia and chronic fatigue syndrome. I hate having to look forward to lupus, and wondering if I already have it. I hate fearing getting rheumatoid arthritis, assuming I don’t have it already, and particularly getting a severe case like you see in medical textbooks. I hate anything else that is likely to pop up in my future. I hate having such a suppressed immune system that when I go out to a mall or airport or crowded anywhere, that a few days later I’ll be quite sick. Sicker than most folk get for a generic cold, and where it lasts twice as long as normal. I need to get my blood tested for this junk, I’ve needed it for a few years, but there are no rheumatologists anywhere within a 2 hour drive of here that takes our insurance. This isn’t the boonies, this is Salt Lake City for Ted Koppel’s sake. So I don’t even know how bad what I have is anymore. Or what I have. I might even be considered to have lupus if the couple patches of scaly, thick skin I have is indicative on top of everything else wrong.
I can’t be given a good tight hug. I can’t be poked in the ribs (or have my chihuahua jump on my ribs) or I feel like they’ve been broken, and will be an unbearable pain for 5 to 10 minutes. I don’t like being constantly drowsy, always just slightly too cold or too warm, and often not having the energy to do fun things. I make my father angry that I’m so massively imperfect. I make my mother extremely depressed because I’m so often in pain or very sick, and that the longer I’m alive, the worse everything will get, and because of the thyroid/weight problem and the diseases that I’ll never have more than a fairly close friend because who would want “someone full of diseases that can’t be cured and will only get worse”. I can’t complain about any this to my mom; if I even mention it, she starts sobbing and saying how awful she is, even if I laugh it off. I’m already having a tough time with college, as with the few classes I’ve taken where I go sit in a classroom, I’ve ended up having to skip many days due to getting sick from other people there, or having those run-over-by-a-tractor days where it’s all I can do to get out of bed. (I had to self-teach myself almost all of my high school stuff, with tutors for math and foreign language, from being absent for months. My rheumatologist then was all for it, even.) If I’m having this much trouble with a twice a week, three hour class, I can only imagine how unable I’d be to do a lot of normal jobs. So now I’m having to try to figure out a way to run a small self-business perhaps so I can actually earn money. Ugh. So stressful.
I mean, come on…I haven’t even reached my 21st birthday yet, and I’ve had most of these diseases diagnosed between 8 and 12. I’ve spent a good long time learning about this stuff (although this post is fuzzy because I’m extremely tired and unhappy right now, having probably made my best friend hate me), and I know the various things I’m likely to get as I get older. Jeez, why couldn’t I have gotten fibromyalgia at the normal mid-40s age, rather than diagnosed at 12 after a good year or so of suffering? Why can’t I have more things that are treatable with medication, instead of surgery or “tough luck, live with it”? Can’t I have something not awful coming up for me?
