Sunday, September 18, 2011

NICIAW - Interstitial Cystitis

Jay writes:

1. The illness I live with is:  Interstitial Cystitis

2. I was diagnosed with it in the year: 2005

3. But I had symptoms since: 2002

4. The biggest adjustment I’ve had to make is: learning to quickly find restrooms in public places, and learning how to *politely* skip to the front of the line if it's there.

5. Most people assume: I don't know.  I think most people don't assume anything, because I think most people don't think about it.

6. The hardest part about mornings are: waking up and feeling like my bladder is truly going to explode

7. My favorite medical TV show is: My family doesn't watch TV.

8. A gadget I couldn’t live without is: My computer, but that has nothing to do with the I.C.

9. The hardest part about nights are: being really sleepy and knowing I will have to get up in just a few hours to use the bathroom.

10. Each day I take __ pills & vitamins. (No comments, please) 1 Pill, Elmiron, 3 times daily.

11. Regarding alternative treatments I: believe in whole-body health, but I'm not aware of any alternative options specifically for the interstitial cystitis.

12. If I had to choose between an invisible illness or visible I would choose: visible.  It would get me to the front of the restroom line easier.

13. Regarding working and career: aside from once having to explain to my boss that my frequent bathroom breaks were medical in origin, this hasn't impacted work or career at all.

14. People would be surprised to know: that this disease actually does hurt a lot of the time.

15. The hardest thing to accept about my new reality has been: I don't know.  Reality hasn't really changed for me with this.

16. Something I never thought I could do with my illness that I did was: I have never thought my illness would hold me back from anything.

17. The commercials about my illness: There are commercials about I.C.?  Really?

18. Something I really miss doing since I was diagnosed is: Again, it hasn't really changed my life.  Though I do miss sleeping through the night.

19. It was really hard to have to give up: caffeine.  When the doctor suggested it, I said "No way."  But now, having finally done so... it does help.

20. A new hobby I have taken up since my diagnosis is: I organise bathroom races.  Okay.  No, I don't.  I don't have a new hobby.  I am hobby-impaired.

21. If I could have one day of feeling normal again I would: Go on a really long hike.  And not pee in the bushes.  I would hold it, until I was back to "civilization."

22. My illness has taught me: that self-pity is easy to do but hard to live with.  Positivity and a good perspective are harder to maintain, but easier to live with.

23. Want to know a secret? One thing people say that gets under my skin is: Be thankful it's nothing worse, and it's just your bladder.  "Just my bladder" actually really hurts and I really do not like being a slave to its whims.

24. But I love it when people: Graciously let me to the front of the line in the ladies' room without saying "You don't look pregnant, though"

25. My favorite motto, scripture, quote that gets me through tough times is:  "This, too, shall pass."

26. When someone is diagnosed I’d like to tell them: Take your meds, stop drinking caffeine, and remember - this is not a death sentence or even a serious life-impairment sentence.

27. Something that has surprised me about living with an illness is:  How resentful it makes me some days, and how even though it's not dangerous, it has made me contemplate things like a living will, what I want for myself when I get old, and what it's like for those who are seriously impaired by chronic illness that none of us can see.
28. The nicest thing someone did for me when I wasn’t feeling well was:  My doctor said "You could take this medication - it will help."

29. I’m involved with Invisible Illness Week because: I read about it on someone's blog and realized that this could be my one chance to complain about explain what it's really like.

30. The fact that you read this list makes me feel: like this blog author actually does post submissions from other people.

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