(originally posted on LiveJournal)
Apparently, it’s Invisible Illness Week. Who knew? Anyway, I’ve been thinking a lot about CRPS and its side effects recently, so this meme seemed timely regardless. I’m going to try to be brief. Really.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Complex Regional Pain Syndrome, aka CRPS, formerly known as Reflex Sympathetic Dystrophy, or RSD.
2. I was diagnosed with it in the year: 2003 (March 2003 first, then confirmed in May 2003)
3. But I had symptoms since: January 2003 (I was lucky to be diagnosed so “quickly”.)
4. The biggest adjustment I’ve had to make is: We had to move across the country. Warm, constant weather is better for CRPS.
5. Most people assume: That I let the CRPS stop me from doing things I want to do. Max makes a rather big deal out of my knee, I think. If I really want to do something, I’ll do it, pain be damned. (At least, on a one-time basis.) It’s not so much that there are things that I can’t do – it’s that there are things that I might be able to do that hurt like a bitch.
6. The hardest part about mornings are: Getting into a routine time of waking up. Because I don’t go to sleep at a routine time, and I take meds.
7. My favorite medical TV show is: ER, long ago. I don’t watch medical shows anymore.
8. A gadget I couldn’t live without is: I don’t have any gadgets related to my illness. In general, it’s my shiny MacBook Pro.
9. The hardest part about nights are: Heartburn. The nortriptylin gives me heartburn sometimes. I can sometimes avoid it by eating ice cream or something milk-like before I take it, but that doesn’t always work.
10. Each day I take __ pills & vitamins. (No comments, please): Actually, I only take 3 pills and one swig of liquid meds. When it’s allergy season, I add a fourth pill. I’m very lucky. Most people with CRPS/RSD take several medications, including medications for the side effects of their medications.
11. Regarding alternative treatments I: Love hypnosis! I keep thinking I should find a hypnotherapist out here, but I never do. Hot tub therapy was also incredibly helpful.
12. If I had to choose between an invisible illness or visible I would choose: I think I’d stick with invisible. In some ways it’s harder, but I don’t think I could deal with people staring.
13. Regarding working and career: Let me tell you about what happened at Oracle sometime… it taught me that being open about an illness is not the way to go. And that set me up for my current predicament. But, I’m keeping this brief…
14. People would be surprised to know: Although I say I have nerve damage in my knee, CRPS messes with the entire nervous system. It rewrites the pathways to your brain, and causes problems like dizziness and short term memory loss.
15. The hardest thing to accept about my new reality has been: That I really can’t exercise properly. I mean, I could probably do cardio kickboxing, for about a minute, but the pain would be unbearable.
16. Something I never thought I could do with my illness that I did was: Get by without traditional pain killers. I’m on two off-label drugs for pain, and got off all pain killers in January this year.
17. The commercials about my illness: Don’t exist. I’ve seen ads in Newsweek for neuropathic pain though.
18. Something I really miss doing since I was diagnosed is: Cardio kickboxing. Seriously. I used to do it at Oracle.
19. It was really hard to have to give up: Being thin. With my movement so limited (remember, although I can do things, pain is something I like to avoid), I’m never going to be 110 pounds again. It’s incredibly difficult to manage my weight.
20. A new hobby I have taken up since my diagnosis is: Parenting? I guess that’s not a hobby. I actually had to give up scrapbooking so much because of how I have to sit.
21. If I could have one day of feeling normal again I would: See, I feel normal a lot. I’m very lucky, blessed, or both. I’m not in constant pain anymore. I know the pain is there, on the edge, and it will come back under certain circumstances. It would be nice to be able to play tag with Jack. Running hurts too much.
22. My illness has taught me: Patience.
23. Want to know a secret? One thing people say that gets under my skin is: When they ask me about surgery, as in, “Why don’t you have surgery to fix your knee?” Because the problem’s not exactly *in* my knee, and you can’t really operate on nerves.
24. But I love it when people: Slow down. Some people walk really fast, and, even though I’m much better than I was, I still can’t walk too fast without feeling the burn.
25. My favorite motto, scripture, quote that gets me through tough times is: There’s nothing in particular. I just try to remember that there’s a reason for circumstances like this, and to be patient and work through them.
26. When someone is diagnosed I’d like to tell them: Find a good pain specialist! Not an anesthesiologist, but a neurologist or similar doctor. Check out the American Foundation for Pain and find people who have what you have. Don’t listen to doctors who don’t know what they’re talking about.
27. Something that has surprised me about living with an illness is: That it got better. I was sure I’d never be pain-free.
28. The nicest thing someone did for me when I wasn’t feeling well was: Well, Max is always nice to me, but the one thing that comes to mind is – My friend Joanne came over right after I first diagnosed and made me lunch and just sat and talked. It was awesome! I miss Joanne.
29. I’m involved with Invisible Illness Week because: I’m lucky. I found the right combination of drugs and therapy and now I’m much, much better than I thought I’d ever be. But most people with CRPS aren’t lucky. They don’t get diagnosed quickly enough, doctors don’t understand their issues, and the pain doesn’t respond to traditional drugs and therapies. It’s important that people are aware that pain is a disease.
30. The fact that you read this list makes me feel: Content. It’s nice to have friends who’ll stick around for 30 questions.