Monthly Archives: September 2009

Some links

The always-informative EDS Alert has been updated with a lot of links.

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Invisible Illness Week

It is almost Invisible Illness Week and September is Pain Awareness Month so am posting a meme “30 Things About My Invisible Illness You May Not Know”:


  1. The illness I live with is: Classical Ehlers Danlos Syndrome (cEDS) with secondary Postural Orthostatic Tachycardia Syndrome (POTS) and Myofascial Pain Syndrome. cEDS is a genetic syndrome that affects the collagen in my body, which is the primary protein in one’s body. My body’s structural integrity is cruddy. Stretchy joints and skin, eye problems etc. POTS makes my heart rate increase (to almost 150 bpm) when I go from sitting or laying down to upright. “Gravity hates me.”
  2. I was diagnosed with it in the year: 2008
  3. But I had symptoms since: always, since it is genetic, but not really symptomatic until about age 40 (which makes me lucky).
  4. The biggest adjustment I’ve had to make is: Adapting to my fatigue.
  5. Most people assume: I’m not always in pain.
  6. The hardest part about mornings are: they happen. POTS really makes one feel terrible in the morning. I take my meds while I’m still in bed so I can get upright without getting sick.
  7. My favorite medical TV show is: I don’t really watch much TV.
  8. A gadget I couldn’t live without is: My TENS — Transcutaneous Electrical Nerve Stimulation — unit. ZZZZZZZZZZTTTTTTTT.
  9. The hardest part about nights are: That I feel pretty good & want to stay up.
  10. Each day I take 6 pills & vitamins.
  11. Regarding alternative treatments I: am required to be in mind/body therapy in order to be a pain clinic patient. I’m woo woo anyway so that is fine with me.
  12. If I had to choose between an invisible illness or visible I would choose: none of the above?
  13. Regarding working and career: everything is different now.
  14. People would be surprised to know: I wrote a whole bunch of sonnets about sideshow freaks then years later found out I have EDS – same as sideshow “India Rubber Men” like James Morris. I had no effing idea LOL.
  15. The hardest thing to accept about my new reality has been: telecommuting/ADA accommodation/job changes.
  16. Something I never thought I could do with my illness that I did was: …get back to me when this clinical study is over in 3 months haha and maybe I’ll have an answer.
  17. The commercials about my illness: ha. Yeah, right.
  18. Something I really miss doing since I was diagnosed is: going to work.
  19. It was really hard to have to give up: having a Bass Ale once in a while.
  20. A new hobby I have taken up since my diagnosis is: participating in clinical trials/studies haha. (lucky)
  21. If I could have one day of feeling normal again I would: work out in the yard.
  22. My illness has taught me: don’t take anything for granted.
  23. Want to know a secret? One thing people say that gets under my skin is: …not sure. I’m sure people think I’m a malingerer though. Which bugs me because I’ve been working since I was 7 years old, and I had 3 part-time jobs while going to school full-time, worked and got 2 Master’s degrees, etc.

    Also, sometimes I have some pretty gnarly visible bruises so if I am at the store, etc I bet some people assume I’m being abused.

  24. But I love it when people: hold the door open for me (shoulder probs).
  25. My favorite motto, scripture, quote that gets me through tough times is: this Woody Guthrie song and Peggy Lee song
  26. When someone is diagnosed I’d like to tell them: learn as much as you can because most Drs don’t know jack sh*it.
  27. Something that has surprised me about living with an illness is: its color bleeds through everything.
  28. The nicest thing someone did for me when I wasn’t feeling well was: redecorated my house with the stuff I already have & made it more accessible.
  29. I’m involved with Invisible Illness Week because: it sucks to have them.
  30. The fact that you read this list makes me feel: like a Rolling Stone.