Meme via Valerie.
1. The illnesses I live with are: Polycystic ovarian syndrome, endometriosis, thyroid disease, plus a mess of fun complications.
2. I was diagnosed with it in the year: 1999, 2007, 2002
3. But I had symptoms since: 1993, 1996, 2002
4. The biggest adjustment I've had to make is: I guess just generally being unwell? I take pills everyday, I see doctors all the time, I get bloodwork and other tests done frequently, I rage about health insurance and doctor incompetence.
5. Most people assume: I don't know if they really assume anything. I mean, unless I say something. A few months ago I mentioned my medication to my niece, and she asked me, "Why are you on medication? You're not crazy." ... It was funny because most people we know are on medication because they're crazy. Although, off medication, people have thought I was crazy, because crashing mood swings are a thing.
6. The hardest part about mornings is: Getting up? I've never been a morning person, though, so I can't say if this is to blame.
7. My favorite medical TV show is: Mystery Diagnosis.
8. A gadget I couldn't live without is: I don't really have gadgets. My pill carrier is pretty useful, but I can find other ways of toting them around.
9. The hardest part about nights is: Getting off the computer? I don't know, it's not really a day/night sort of deal.
10. Each day I take 8 pills & vitamins. I take Glucophage, Yaz (though I need something else, because it sucks), Magnesium, B6, Levothyroxin, Singulair, and Zyrtec. (Oh, I'm also pretty much allergic to everything, but that's not really a disease.)
11. Regarding alternative treatments, I: think they're okay? I mean, alternative treatment in this case means exercise and restricted diets, which I don't do with regularity because in my case they don't make a difference.
12. If I had to choose between an invisible illness and a visible one, I would choose: Invisible. I mean, I guess visible illnesses are good (... you know what I mean) because other people can understand them easily and give you appropriate support. But most people probably wouldn't guess that I'm a sickly person, and I really like that better.
13. Regarding working and career: Well, I tried to work in an industry that requires the constant maintenance of youth and beauty while fighting a condition that makes you fat, hairy, discolored, and broken-out. So, there's at least one reason that didn't turn out so well.
14. People would be surprised to know: Well, no offense lady, what you don't know could fill a warehouse.
15. The hardest thing to accept about my new reality is: Nothing? I mean, at this point it's been over ten years, and I don't really know anything else. Before that I was a child, and that just doesn't count.
16. Something I never thought I could do with my illness was: 1. Be off medication and 2. have babies. 1. I can't, and 2. it's never come up.
17. The commercials about my illness There are no commercials about my illness.
18. Something I really miss doing since I was diagnosed: Again, I don't really know anything else.
19. It was really hard to give up: Nothing? I mean, I wasn't doing anything that I shouldn't have been doing.
20. A new hobby I've taken up since my diagnosis is: ... Every hobby I've taken up since I was 15. ... I think I'm doing this wrong.
21. If I could have one day of feeling normal again, I would: Really, I think I'm doing this wrong. My health issues are so intertwined with everything else in my life, I can't really think about them separately.
22. My illness has taught me: You have to be an active advocate for your own health. You must stay on top of it, because you're the only person who can. Do not rely on doctors. The only difference between a doctor and you is information: if you had the information they had, you'd be a doctor. That said: use doctors. If what they're doing isn't making you better, make them change or get someone who will help you. Do not be passive and do not let things go.
23. Want to know a secret? One thing people say (about my illness) that gets under my skin is: It's caused by being fat, and if you lose weight, you'll be fine. I get that this is true for a lot of conditions, and frankly sometimes I'm petty about it. I call Type I diabetes "real diabetes" and anytime I hear that someone stopped taking medication after losing weight, my inky heart shrinks a fraction. I've been an healthy and attractive weight, exercised constantly, stuck to a dietitian's plan*, and had optimal levels of all the things medical science worries about**. I was just as sick, just as symptomatic as when I did absolutely nothing. So it goes.
* although there's little about my usual whole-grain organic water-guzzling vegetarian diet you could find fault with. I caught part of this special on television the other day where a woman said she was able to lose weight after she stopped having cookies and soda for breakfast. Christ, I could have spit.
** this is also just generally true. I'm in pretty good shape aside from all the things that are wrong with me.
24. But I love it when people: Are duly impressed at the wealth of things that are wrong with me. Just for a minute. Because, well, yes, it does suck. Thanks for noticing.
25. My favorite motto, scripture, quote that gets me through tough times is: Ha! Not to sound like my mother or anything, but other people have it a lot worse. I mean, not that that makes it suck any less, but I don't have something terminal. It's nothing to shake my fist at God over.
26. When someone is diagnosed I like to tell them: I don't. I like to listen.
27. Something that has surprised me about living with an illness is: It's surprisingly easy. People apparently freak out at the idea of having to take pills forever and seriously you guys, you guys seriously, it's not that big a deal. Honestly, the biggest problem is how much it all costs. Which once again proves that money can buy you happiness because if I had more money it seriously would fix everything.
28. The nicest thing someone did for me when I wasn't feeling well was: I can't think of anything. Please feel free to infer that this says horrible things about my life.
29. I'm involved with Invisible Illness Week because: Oh man, I'm totally not involved with anything!
30. The fact that you read this list makes me feel: Suspicious and anxiously secretive.
Tuesday
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4 comments:
My mom's on Levothyroxin.
[/...useless comment]
Also, I am duly impressed by the wealth of things that are wrong with you. If that makes you feel better.
uncheac
How about being impressed that you never complain about all this? Seriously. 'Cause I would.
I don't feel like doing this whole BOQ, so I'm just going to briefly complain about my invisible illness (chronic back problems): I don't complain every day, so people assume that I feel fine and am just lazy. And I am TOTALLY lazy, but I am ALSO in constant pain. And no one believes me. Because I don't complain. These are, of course, the same people who think I am an ingrate and need to count my blessings if I dare to complain about any ONE thing in my life being hard.
My whole family seems to be having back issues right now. Which is troubling because of, you know, genes, but so far mine seems to be just fine. But I know of the suck.
I also know about the lazy conundrum. Sometimes when I'm not well, I'll say that I'm fine, and someone will say, "Okay well then let's do this!" and then I'll have to say, "Okay, but actually I really can't, because I don't feel well." And they'll say, "But you just said you were fine!"
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