Generating awareness for "invisible illnesses"-- you know, the less known,less sexy ones, including lupus and it's related diseases, is a topic of conversation in Blogland this week. Hosted by Lisa at Invisible Wellness here's my offering to raise awareness of my "invisible disease"...
1. The illness I live with is: Systemic Lupus
2. I was diagnosed with it in the year: 1994 right after the big Northridge, CA earthquake that threw me into such a huge flair up it was (finally) easy to diagnose.
3. But I had symptoms since: Probably high school
4. The biggest adjustment I’ve had to make is: Learning how to respect the illness. It's not as easy as it sounds.
5. Most people assume: I am far more fragile than I am which just goes to show assumptions aren't all they're cracked up to be.
6. The hardest part about mornings are: Trying not to throw the alarm clock across the room and my very stiff ankles
7. My favorite medical TV show is: Does "General Hospital" count?
8. A gadget I couldn’t live without is: Sadly, my iPhone but my electric toothbrush is a close second. It's way easier to use when my hands are sore than a manual one.
9. The hardest part about nights are: Climate change! The meds sometimes make me really hot or really cold.
10. Each day I take between 10 and 19 pills & vitamins.
11. Regarding alternative treatments I've: Tried several and found yoga and breathing meditation to be the most helpful. Most of the others for me were a waste of time and money.
12. If I had to choose between an invisible illness or visible I would choose: I'm totally vain. I'd definitely take the "look good feel bad" kind but I sure wish more people knew about the disease and could get diagnosed sooner.
13. Regarding working and career: I was very lucky and worked successfully from home for 15 years... mostly in my pajamas.
14. People would be surprised to know: How much I miss being out in the sun. It's hard being covered from head to toe with a hat the size of a circus tent when I'm outside, especially on a hot day.
15. The hardest thing to accept about my new reality has been: Prednisone is a huge help but, i yiyi what it does to my weight.16. Something I never thought I could do with my illness that I did was: Blog about it. I didn't talk about my lupus for a very long time. I was afraid it would have a negative impact on the career.
17. The commercials about my illness: Are few and far between. There is no "big money" drug to advertise so there aren't many TV commercials for lupus.
18. Something I really miss doing since I was diagnosed is: Spontaneously doing things-- like opening a jar or better yet, picking up a baby. Some days the pain makes that nearly impossible.
19. It was really hard to have to give up: The idea that I could work full time in "Corporate America" with traditional "9am - 5pm" job responsibilities.
20. A new hobby I have taken up since my diagnosis is: Yoga. Before lupus, I'd have never given it a second thought-- Who knew!
21. If I could have one day of feeling normal again I would: Wake up early, take a ballet class, meet loved ones for lunch, go to the park and hang upside down from the monkey bars with the kids then still have energy to make a great dinner and go out dancing with my husband..... without paying the price for doing all of that the next day.
22. My illness has taught me: Grace
23. Want to know a secret? One thing people say that gets under my skin is: "You look so tired." on the rare occasion I'm actually not!
24. But I love it when people: Make me laugh out loud
25. My favorite motto, scripture, quote that gets me through tough times is: "When what you're doing isn't working, try something different." Wyatt Webb Simple, right? But that took me a long time to learn, especially when dealing with my doctors.
26. When someone is diagnosed I’d like to tell them: "Call me, we'll talk."
27. Something that has surprised me about living with an illness is: I've learned to appreciate the small stuff that I never seemed to notice before.
28. The nicest thing someone did for me when I wasn’t feeling well was: An acquaintance arrived at my home unexpectedly and brought all the ingredients for homemade chicken soup. I was pretty sick at the time and she kept me company while I napped and the soup simmered on the stove all day.
29. I’m involved with Invisible Illness Week because: I know so many people with autoimmune diseases and we need all the help, support and awareness we can get!
30. The fact that you read this list makes me feel: Pretty darn happy! Thank you.
Until next time...
Cheers, Joanna J. aka Lemon-Aid
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