It was fun reading my siblings’ and cousins’ 50 Things About Me on Facebook. Maybe this list can be just as fun. This post is brought to you courtesy of National Invisible Illness Awareness Week.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
How interesting that this is written in the singular. Wouldn’t it be cool if we were limited to one illness?!
Raynauds, peripheral neuropathy, RA (maybe, definitely yes, probably not, maybe, no idea), and possibly SLE (rhupus). My rheumy is re-evaluating the RA diagnosis; I lost my label at the same appointment that my medicine dose was increased; there’s something autoimmune going on that has caused verifiable damage, but she’s not sure what it is.
2. I was diagnosed with it in the year:
Raynauds – 1974, RA – 2007, possible SLE – 2008, PN – 2009
3. But I had symptoms since: I was a kid.
I thought it was great how my fingers were patriotic. They’d turn white, blue & red. The accompanying coldness wasn’t much fun, but it sure looked cool! My dad freaked out the first time he saw it; he thought my hands looked like they belonged on a cadaver. “My toes do it, too!” Somehow I managed to convince him it that the circulation always came back again and I’d be okay. Was finally diagnosed when I spent a week with my grandparents and my grandmother saw it happen. “Dad knows, and it’s okay.” No fooling her, though. Grandma was a receptionist for a medical clinic; she came home for lunch one day and was greeted by my white fingers and toes. I had an immediate doctor’s appointment.
RA symptoms, mostly fatigue, began sometime around the birth of child #4. I figured that it was due to the close spacing of my kids and thought it would get better as the kids got older. If you really want more details than that, I think the whole ordeal is chronicled in my roller coaster series.
4. The biggest adjustment I’ve had to make is:
asking people for help
5. Most people assume:
that RA is OA
6. The hardest part about mornings are:
having hands that are too swollen to make a fist, and feet that hurt to touch the floor
7. My favorite medical TV show is:
I don’t watch much television. I read a lot of medblogs, though!
8. A gadget I couldn’t live without is:
I have a cool tool that I sometimes need for getting the lids off my pill bottles, but usually have someone around who can help if I need it. Other gadgets I appreciate are my refrigerator, oven, washing machine, and clothes dryer. Can’t imagine having to manipulate clothes-pins to hang the laundry to dry!
9. The hardest part about nights are:
Actually, nights are pretty good since I’m exhausted and ready for bed even before my kids are sleepy. As long as I do my PT exercises to keep my hips and rotator cuffs in good working order, I sleep well.
10. Each day I take ten prescription pills & zero vitamins. (No comments, please)
Vitamins would probably be a good idea (or at least calcium), but I quit taking them. Ten is plenty!
11. Regarding alternative treatments, I:
don’t look too favorably on snake oil salesmen
12. If I had to choose between an invisible illness or visible I would choose:
no illness at all – I know that wasn’t an option, but if we’re going to imagine that we get a choice…
13. Regarding working and career:
My mom worked before it was popular for women to be employed, so I know what it’s like to grow up with babysitters instead of parents. I want to be home for my kids, and am thankful that it’s a possibility. I worked regularly from age 16-30; I know what it is to have a career. Fortunately, I’m able to give my kids a stay-at-home mom.
14. People would be surprised to know:
that I’m still in constant pain despite all my meds
15. The hardest thing to accept about my new reality has been:
that there might be a genetic component to this; I might have passed this on to my kids
16. Something I never thought I could do with my illness that I did was:
keep going, despite how I feel
17. The commercials about my illness:
Are there commercials about my dx? Even on those rare occasions that I watch TV, I don’t watch the commercials.
18. Something I really miss doing since I was diagnosed is:
sitting in the sun
19. It was really hard to have to give up:
any sense of control over my life
20. A new hobby I have taken up since my diagnosis is: blogging – but you knew that
21. If I could have one day of feeling normal again I would: hope to enjoy it to the fullest!
This might be the hardest one on this whole list. I do my best to give my kids a sense of normalcy so that their childhood memories don’t revolve entirely around my illness. With a zillion doctor’s appointments and routine blood draws it’s hard, but I try.
22. My illness has taught me: this could be a whole series of posts all by itself
23. Want to know a secret? One thing people say that gets under my skin is:
“Have you tried ___?” (see #11)
24. But I love it when people:
treat me as normally as possible, while at the same time recognizing that I can’t always do things that I’ve done in the past
25. My favorite motto, scripture, quote that gets me through tough times is:
1) God will never give you more than you can handle
2) You can’t change the cards you’re dealt, just how you play the game
26. When someone is diagnosed I’d like to tell them: hang in there; it can get better
27. Something that has surprised me about living with an illness is: how incredibly nice people are
28. The nicest thing someone did for me when I wasn’t feeling well was:
One friend from church asked (like everyone does) “how ya doin’?” and called me a liar when I said, “fine.” She noticed how I was doing, prayed with me, and continues to keep me honest.
29. I’m involved with Invisible Illness Week because: people are great when you give them the chance. When people know about some of these invisible diseases, then they can help – or at least feign compassion.
30. The fact that you read this list makes me feel: astonished!