Thursday, September 17, 2009

30 Things About My Invisible Illness You May Not Know

This is a list that's going around Facebook.  I know if I post it here, my non-FB friends as well as those on FB will read it and maybe add it to their blogs, as well.

1. The illness I live with is:  I have 2.  Post-op Cushing's Disease gives me panhypopituitarism and adrenal insufficiency. I also have post-op kidney cancer (renal cell carcinoma).

2. I was diagnosed with it in the year: Cushing's, 1985; cancer 2006

3. But I had symptoms since: About 1982

4. The biggest adjustment I’ve had to make is: Cushing's - spending most of my time sleeping; cancer - not being able to take my arthritis meds.

5. Most people assume: that I'm fine but lazy.

6. The hardest part about mornings are: waking up and moving any joints.

7. My favorite medical TV show is: House.

8. A gadget I couldn’t live without is: used to be my computer.  Now my iPhone.

9. The hardest part about nights are: bad dreams.

10. Each day I take __ pills & vitamins: 2.  My kidney surgeon won't let me take any more without his approval because they could harm my one kidney.  One of the ones I do take is to support the kidney, the other is to support the one adrenal.

11. Regarding alternative treatments I: have a long-term anger at a practitioner who I think contributed to my father's death by not telling him he had cancer rather than stringing him along.

12. If I had to choose between an invisible illness or visible I would choose: Visible.

13. Regarding working and career: I don't have the energy to work, not full-time, anyway.  I had a part-time job last year and it really sapped my non-existant energy.

14. People would be surprised to know: that I have trouble dealing with so many things.

15. The hardest thing to accept about my new reality has been: that I can't do what I want to do.

16. Something I never thought I could do with my illness that I did was: that part-time job.

17. The commercials about my illness: do not even exist. 

18. Something I really miss doing since I was diagnosed is: I miss being SuperWoman.  We used to have "project days", get things done.  Now, I can sometimes start something but never finish.

19. It was really hard to have to give up: my arthritis meds.  When I have a headache, my headache meds.  Sometimes I wonder if protecting the kidney is worth the other pain.

20. A new hobby I have taken up since my diagnosis is: Naps. Sleeping. Resting.

21. If I could have one day of feeling normal again I would: Wow, I don't even know.  Maybe just go shopping at the mall.  I haven't done that for nearly 30 years.  Maybe go work out at a gym, ride a bike.  Maybe...?

22. My illness has taught me: a lot about web design :)  I've also learned a LOT of medical terms, testing info.

23. Want to know a secret? One thing people say that gets under my skin is: People making fun of fat/obese folks.  Maybe they have Cushing's or another illness that makes them the way they are.

24. But I love it when people: let me know I'm worthwhile even when I'm feeling worthless and useless!

25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 116.

26. When someone is diagnosed I’d like to tell them: Learn everything you can.  Get the best doctors.  This is your life, you have to take excellent care of it.

27. Something that has surprised me about living with an illness is: that I could start/run/maintain the Cushing's family of sites.

28. The nicest thing someone did for me when I wasn’t feeling well was: trying to understand.

29. I’m involved with Invisible Illness Week because: I'd like healthy people to know that there are lots of others out there who have invisible illnesses and don't make assumptions that they're just lazy, stupid, ugly, whatever.

30. The fact that you read this list makes me feel: like you care. Thank you!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at

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