30 things about my invisible illness you may not know – 2011

By LupusRanting
1. The illness I live with is:  Systemic Lupus Erythematosis, Sjogren’s syndrome and autoimmune hypothyroidism2. I was diagnosed with it in the year:  19923. But I had symptoms since:  I was 9 years old4. The biggest adjustment I’ve had to make is:  avoiding UVA/UVB rays5. Most people assume:  I’m NOT sick because I don’t often look ill6. The hardest part about mornings are:   joint pain7. My favorite medical TV show is:   Mystery Diagnosis!8. A gadget I couldn’t live without is:   sunscreen lotion!9. The hardest part about nights are:   joint pain.10. Each day I take __ pills & vitamins. (No comments, please) 1411. Regarding alternative treatments I:  wish I could afford acupuncture (because I haven’t tried it) and craniosacral therapy (because it really helps)12. If I had to choose between an invisible illness or visible I would choose:  NEITHER!13. Regarding working and career:   I used to work full time but am now on disability14. People would be surprised to know:  how much sleep I require15. The hardest thing to accept about my new reality has been:  realizing that I can’t work full time, even if I want to.16. Something I never thought I could do with my illness that I did was:  travel.17. The commercials about my illness:   really don’t tell the whole story.18. Something I really miss doing since I was diagnosed is:   basking in the warm sun.19. It was really hard to have to give up:   being outdoors on a regular basis.20. A new hobby I have taken up since my diagnosis is:  designing and creating jewelry.21. If I could have one day of feeling normal again I would:  spend the day outside at a park.22. My illness has taught me:   patience.23. Want to know a secret? One thing people say that gets under my skin is:  “Have you every tried …..?”24. But I love it when people:   tell me they keep me in their prayers.  It really helps.25. My favorite motto, scripture, quote that gets me through tough times is:   When God closes a door, he opens a window.26. When someone is diagnosed I’d like to tell them:   you are not alone.27. Something that has surprised me about living with an illness is:   the isolation of living with a disease none of my friends have.28. The nicest thing someone did for me when I wasn’t feeling well was:   give me a hug.29. I’m involved with Invisible Illness Week because:   I have lupus.30. The fact that you read this list makes me feel:   I’m not alone.