Invisible Illness Week

So I’ve pretty much just ignored the fact that it’s invisible illness awareness week, eh? I did have a lot of other exciting things going on 🙂

I stole this from Melanie over at College Life With Lupus, because she’s awesome.

1. The illness I live with is: rheumatoid arthritis (which causes its own collection of added problems)

2. I was diagnosed in the year: 1994ish?
3. But I had symptoms since: 1992ish
4. The biggest adjustment I have had to make is: Honestly, I really didn’t have to make adjustments. I don’t remember being without my RA, so I’ve just always done things a little bit differently.
5. Most people assume: That I am chubby and lazy.
6. The hardest part about mornings is: Getting up. Between not being able to sleep and needing to sleep more than I do, I usually just do not want to get out of bed.
7. My favorite medical TV show is: HOUSE. I kind of just generally love Hugh Laurie (yay Blackadder), but the character of House is just intriguing for so many reasons. He’s constantly in pain, sarcastic, likes puzzles… 
Oh crap, I’m House.
8. A gadget I couldn’t live without is: My computer and my mp3 player both.
9. The hardest parts about nights are: getting to sleep is the worst part really. I’m a night owl, and living in the real world is lame.
10. Each day I take: Plaquenil (full day two!) and birth control. Otherwise, I get super grumpy. Also, having anemia and then menstruating… Well, it results in dizziness and just is not fun in general.
11. Regarding alternative treatments: I wish they worked more often.
12. If I had to choose between an invisible illness and a visible one I would choose: I would rather have my invisible illness and be judged when I do need help than to have a more visible one and need help more often.
13. Regarding work and career: Oh, teaching/working for the State Department/UN should be no problem… right? For right now though, working two jobs and going to grad school full time is getting exhausting.
14. People would be surprised to know: how much pain I experience on a daily basis. I don’t really complain unless it’s pretty bad, so if I’m bringing stuff up a lot, it’s really not good.
15. The hardest thing to accept about my new reality is: It’s really all about the disease getting worse and worse over the last six-eight months. This is as bad as it’s been since I was first sick. To have to slow down and take it easy – well, it’s not easy for me.
16. Something I never thought I could do with my illness was: I didn’t ever see me being able to go hiking, especially hiking down to the coast from a lighthouse in flip flops and feel alright afterwards. More importantly, I think a lot of people with chronic illnesses tend to think they will never find love. They’re wrong 🙂
17. The commercials about my illness: make everything seem perfect. That’s not how it works, bastards.
18. Something I really miss doing since I was diagnosed: Melanie said wearing heels, and I have to agree. I also really miss – and this is weird, because I’ve been able to do it for two days again – just bending my legs/joints in weird ways.
19. It was really hard for me to give up: the lie that I was alright and didn’t need any help/medicine.
20. A new hobby I have taken up since my diagnosis is: Everything pretty much, haha. Four year olds pretty much just watch Disney movies :-p
21. If I could have one day of normal again I would: Oh man, I would go running. A nice two or three mile jog, like in high school. Mmmm.
22. My illness has taught me: that other people have a lot of problems that you don’t get to see, and it’s always good to be nice and help the brighten their day 🙂
23. One thing people say that gets under my skin is: I don’t like when people suggest I am not actually sick. Like, OH MY GOD, I’ve only been dealing with this since I was FOUR. Seriously.
24. But I love it when people: can tell when something is wrong without me having to talk about it a lot
25. My favorite motto, quote, etc is: Right now, I’m very much into Dave Matthews: “To change the world, start with one step. However small, the first step is hardest of all,” and “I ain’t waiting for the world to change, gonna change the world for you.” But I’m a movie/song/book quote lovin’ kind of gal.
26. When someone is diagnosed I would like to tell them: It’s going to be a very tough road, but the journey is what is most important about life anyhow. It’s not the destination, but the ride there that matters most.
27. Something that has surprised me about living with an illness is: How some people don’t understand how bad it can be or how it affects me, and they don’t care to learn. Gah, I hate ignorant people.
28. The nicest thing someone has done for me when I wasn’t feeling well was: rub my legs, without me asking, and holding me while I cry is always pretty nice too
29. I’m involved with Invisible Illness Week because: There are still too many people who think RA is an old person’s disease.
30. The fact that you read this makes me feel: Good, and I hope it helped to shed light on some things.

You may also like...