30 things about my invisible illness (11.23.10)

So I’m a bit late doing this, but hey … I’m late to everything, so it’s nothing new 😉



I was going to rant about my doctor’s appointment again today, but it would actually be a rant about the fact that is was a Horrible day, and really has nothing to do with him — but the appointment was pretty bad.


Instead, I’m doing this. Then I’m off to write for a friend’s invisible illness site about what I’m grateful for, since Thanksgiving is this week!


*30 Things About My Invisible Illness You May Not Know


1. The illness I live with is:
a few — the main 2 are lupus & fibro
2. I was diagnosed with it in the year:
3. But I had symptoms since:
ah heck, a while before, but i’d say the fatigue started in 2006 — to the point of it *really* affecting my life (and job) … before that i could ignore it
4. The biggest adjustment I’ve had to make is:
my social life
5. Most people assume:
i’m lazy … and i hate it!!
6. The hardest part about mornings are:
simply getting out of bed … my daughter has to bug me for a half hr to an hour — sometimes more. it’s sooooo hard
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
my droid
9. The hardest part about nights are:
10. Each day I take
22 pills & vitamins (and two liquid medicines, as well). (No comments, please)
11. Regarding alternative treatments I:
don’t use alternative treatments, but my guy is a licensed massage therapist so he works on my hips, legs, and lower back sometimes … along with my neck and shoulders, and it really helps. I was afraid at first because I’d heard it was bad, and it does hurt the first day, but if he does it two days in a row, I actually feel better for quite a while. He hasn’t done that in a bit … need to remind him I’m due 😛
12. If I had to choose between an invisible illness or visible I would choose:
that’s tough. visible illnesses are obviously understood better and people treat you differently, but what kind of visible illness would it be? i’ve grown used to this one and know how to work my life … so I’m not sure.
13. Regarding working and career:
I can’t work much but I try and I adore what I do. And I wouldn’t be doing it if I hadn’t been diagnosed, at least I don’t believe I would — I wouldn’t have had the chance to lose income in the manner I did. I do wish I could do more, that’s for sure.
14. People would be surprised to know:
Hrm… that’s a tough one. Well, for one thing, I didn’t believe I was sick. I just thought I worked too hard and too much. I was shocked when my rheumy said I actually have lupus. I wasn’t one of the ones who knew something was wrong. Guess it comes from hiding depression and other things my whole life. I thought the pain and all was normal and everyone just dealt with it.
15. The hardest thing to accept about my new reality has been:
that I’ll never be able to do active, fun things with my daughter, or take her to the beach … things like that. And the fact that she has to see me sick. I hate that more than anything!
16. Something I never thought I could do with my illness that I did was:
move my house. Twice. I paid for it, but I did it.
17. The commercials about my illness:
I don’t ever see any… That says something.
18. Something I really miss doing since I was diagnosed is:
bowling. I have gone once, but could only play one game and my hands hurt pretty badly after. I used to play three games and just have a blast. I also *really* miss concerts. But I just can’t stand that long. Live music is soooo amazing….
19. It was really hard to have to give up:
shopping excursions, daytime trips, things that would keep me out for hours of fun — girly days, basically. Heck, I couldn’t even go to the zoo with my daughter last month. My grandma took her … how said is that?! :/
20. A new hobby I have taken up since my diagnosis is:
It’s not new, but I’ve done more with crafts. I’d *like* to take up jewelry making, but don’t have the money to invest to start right now.
21. If I could have one day of feeling normal again I would:
wait for a sunny day and go play in the park with my kid and my man, maybe sit around and read there, go swimming or to a water park, go bowling!, have a great lunch with a good drink (same with dinner), maybe to go a movie … I’m not sure. I’d be up for a lot!!
22. My illness has taught me:
who and what matters in life. without a doubt.
23. Want to know a secret? One thing people say that gets under my skin is:
“But it seems like you’re always sick. I never know when you’re really bad or not.” And that may be true as of the past six or seven months or so, but if I’m willing to go to lunch or I’m joking around and stuff, I’m fine. If I’m hobbling and sitting down or napping half the day, it’s a safe bet I’m not doing so hot.
It makes me feel like I complain all the time, and maybe I do, which I hate even more because I never used to. But when I was sick before, I didn’t know it. Now I know it and so I talk about it. I’m not a complainer but that comment makes me feel like one. I can’t stand it.

24. But I love it when people:
actually take the time to ask me how I’m doing and what they can do to help. I love when people *get it*
25. My favorite motto, scripture, quote that gets me through tough times is:
Wow, I’m kind of a quote fiend… I’ll go with the old standby, “This, too, shall pass.”
26. When someone is diagnosed I’d like to tell them:
their life isn’t over. In fact, a new one is just around the corner. You just have to look for that silver lining and that bit of sun that peeks through the clouds just enough to get you by.
27. Something that has surprised me about living with an illness is:
Honestly — that I *can* get sick. I just thought I’d control the symptoms with the meds. I never thought I’d flare this badly. Especially when my rheumy was always saying my disease was “on the back burner.” Back burner, my arse lol
28. The nicest thing someone did for me when I wasn’t feeling well was:
take care of my daughter and let me sleep and cook for me so I hardly had to move.
29. I’m involved with Invisible Illness Week because:
well, it’s over, but I’m an advocate for invisible illnesses. The knowledge and understanding needs to be spread. Medicines, causes, and cures need to be found!
30. The fact that you read this list makes me feel:
Wow…if anyone really does/did read this, it makes me feel honored that you’d care enough to know how I feel and what I go through. And if you have an invisible illness yourself, I hope it made you feel less alone.


About Amy Cate

I have lupus. I'm doing my damndest to advocate and spread awareness. This is just one of the ways I'm involved =D
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