Lately I’ve been focusing intently on a mixed-media polymer clay art project that is building up the ol’ muscles ravaged by RSD and fibromyalgia. Every day I wake up, excited to work with Art, which competes with my husband for being the love of my life (to be fair, I know that I am in competition with my husband’s love of hunting and being a woodsman).  Art, or should I say movement in general, is so painful that it prompts my brain to say, “Why are you deciding to get out of bed today?” It is more necessary that I move now than if I were completely healthy because I have little to no reserve healthiness to fall back on. So, I kick my feet out from under my bed covers each day and mentally prepare for the fight.

However, it has not been as much of a struggle as dealing with the pain when a friend is broken somewhere in his or her life.

Right now I have a good friend whose heart is heavy. She is what I might refer to as an “art friend” because I met her through a shared artistic endeavor. She is incredibly talented, but right now her love for art is on hold. Her spirit and heart are heavy. To me, the worst part about it is that I am in another state and cannot be with her now. My humanness in dealing with illness reminds me that others are human, too, and need compassionate care. My heart cries, “How I wish I could help!” This hurts more than any physical pain I currently experience. Although art and friendships are not crucial to survival, it’s apparent they are fighting for that coveted top spot, otherwise I may not feel them at all.

1. The illnesses I live with are too numerous and complex to list here completely. The main ones are (in no particular order) Multiple Endocrine Neoplasia type 1 (MEN 1 syndrome); atypical Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS); fibromyalgia; mixed bipolar.

2. I was diagnosed with it in the year: 1993 (MEN I); 1999/2000 for the other three.

3. But I had symptoms since 1984 (or thereabouts) for bipolar, 1987 for MEN I, and early 1999 for fibromyalgia and RSD/CRPS.

4. The biggest adjustments I’ve had to make are giving up my career and former way of living, then swallowing my pride to ask for assistance.

5. Most people assume I am pretty healthy and normal based on the way I look and act in public.

6. The hardest part about mornings are waking up to the intensity of pain after the nightmares and long periods without sleep.

7. My favorite medical TV show is House. My husband and I like compete to see which of us will come closest to figuring out the final diagnosis.

8. A gadget I couldn’t live without is an electric jar opener.

9. The hardest part about nights is trying to catch some zzz’s and needing to talk to someone when everyone is asleep and hubby is working.

10. Each day I take greater than twenty pills & vitamins. (No comments, please)

11. Regarding alternative treatments, I love them and use them as much as possible.

12. If I had to choose between an invisible illness or visible I would choose not to choose. I believe it is important for people to understand invisible illness as much as possible, and if that is what I have, I will share what I know.

13. Regarding working and career – well, it was very, very difficult to give up, not only on my dreams, but having to leave the stimulating environment I was in and giving up what I worked so hard to do.

14. People would be surprised to know: I’ve been told that I am still a funny, unjaded, interesting person. I don’t know about that myself.

15. The hardest thing to accept about my new reality has been that I am a much different person than I was only a few years ago, and trying to reconcile who I was then with who I am now spiritually, physically, mentally, and emotionally.

16. Something I never thought I could do with my illness that I did was live this long with intense pain and other chronic problems without going stark raving mad!

17. The commercials about my illness: I am proud to see bipolar brought “out of the closet” into a more positive light. Fibromyalgia is being treated as a more serious diagnosis throughout the United States, but the medications need serious looking into and adjusting.

18. Something I really miss doing since I was diagnosed is speed walking, hiking, and in general, being much more active than I am able to be now.

19. It was really hard to have to give up being able to wear certain clothes. No joke!

20. A new hobby I have taken up since my diagnosis is making cards and minibooks.

21. If I could have one day of feeling normal again I would hike, go spelunking with hubby and friends, learn to surf, play a soccer game, and host a huge outdoor party at sunset for everyone I love. Can I cram that all into one day??

22. My illness has taught me that I am stronger in spirit than I think I am, but also more fragile in body. It has taught me how wonderfully the body really is made.

23. Want to know a secret? One thing people say that gets under my skin is: “If you’d do THIS, you would feel better.” (e.g. exercise, take a particular vitamin, see a particular doctor, et cetera). It puts me in a position where I feel I need to explain myself, and I shouldn’t have to. I do exercise and have tried nearly everything I can to balance my illness and life out…and that’s mostly the key – balance – and not an obsession to do everything at all costs.

24. But I love it when people genuinely want to know something I can share.

25. My favorite motto, scripture, quote that gets me through tough times is: Proverbs 3:5,6 “Trust in the Lord with all of your heart and lean not unto your own understanding. In all your ways acknowledge Him and He will make your paths straight.” Anything by Weird Al Yankovic makes a good second.

26. When someone is diagnosed I’d like to tell them I will share my resources with them, and they can always contact me when they need to.

27. Something that has surprised me about living with an illness is that I was still able to make friends with people I never would have imagined – who needed me as much as I need them.

28. The nicest thing someone did for me (actually me and my husband) when I wasn’t feeling well was: Our church took care of everything we needed to get to the Mayo Clinic, and then provided us with several weeks’ worth of home-cooked meals. There’s been so many nice gestures I can hardly remember them all.

29. I’m involved with Invisible Illness Week because it helps me when I can share about my illness, it helps others to know about me but also to know that just because someone looks a certain way doesn’t mean they are what you might think – not judging a book by its cover. It doesn’t mean I am lazy, I brought this upon myself, or that I do not have enough faith. It does not exempt me from learning about others, either, or continuing to try living life the best that *I* can.

30. The fact that you read this list makes me feel that it is important enough to you, and perhaps I am or someone you know with invisible illness is, too. Thank you so much for taking the time. I really appreciate it! Please feel free to pass this along if you so desire, and ask questions if you need to.