Invisible Illness Week

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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