Invisible Illness Week

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: ulcerative colitis, an inflammatory bowel disease (ibd)

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2001

4. The biggest adjustment I’ve had to make is: taking life slower, carving out time to rest, and being less adventurous with food. also, this latest flare has had many extra-intestinal symptoms, like anemia, which made me more tired than i ever thought possible. and my drugs suppress my immune system, which makes me a bit germaphobic at times. People are just gross in public.

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

6. The hardest part about mornings are: getting out of bed, dealing with active symptoms, having to go back home and change after finally leaving the house.

7. My favorite medical TV show is: House or Scrubs

8. A gadget I couldn’t live without is: my pill keychain that holds my anaspaz

9. The hardest part about nights are: waking up repeatedly in the middle of the night then not being able to fall back alseep

10. Each day I take 21 pills and vitamins. I also get 3 hr iv infusions every 6 weeks, and self-inject once a week. I'm just happy I don't have any more rectal meds (def one of the worst aspects of UC, its location)

11. Regarding alternative treatments I: tried many diets, would like to try yoga, but I don't have the energy or time. I have to avoid adding responsibilities to my schedule -- they just add to my anxiety

12. If I had to choose between an invisible illness or visible I would choose: visable - less guilt, shame, and running to the bathroom

13. Regarding working and career: I used to be super ambitious, now I'll probably never see a promotion, and feel lucky i have a very understanding boss. Though those were really uncomfortable conversations to have to explain my disease and why I need special accomodation.

14. People would be surprised to know: even with my nutritional deficiencies, constant vomiting and diarrhea, I still cannot lose weight, lol

15. The hardest thing to accept about my new reality has been: needing to stay away from crowds and fun festival type activities. I always need to know where the closest bathroom is. and my drugs knocked out my immune system, so I get sick very easily. Colds that a normal person would shake off knock me out for weeks. I feel like i aged 30 years in 3 months. oh, and all the super-invasive tests involved. i'd rather get poked with needles every day than get another flex sig.

16. Something I never thought I could do with my illness that I did was: nothing yet -- i went from being a mild case to pretty severe only over the last few months. I just want to stop this flare, then have a party.

17. The commercials about my illness: there aren't any. no one wants to talk about number 2 issues :)

18. Something I really miss doing since I was diagnosed is: going out dancing. eating thai food. eating sushi. being able to leave the house as planned.

19. It was really hard to have to give up: spicy and interesting food, drinking booze, staying out late. feeling confident i wouldn't embarrass myself in public

20. A new hobby I have taken up since my diagnosis is: restarted knitting

21. If I could have one day of feeling normal again I would: play a great day of paintball, eat curry, go out drinking and dancing until the sun came up.

22. My illness has taught me: to slow down, have a better sense of humor about things, appreciate the small things, ignore the assholes.

23. Want to know a secret? One thing people say that gets under my skin is: are you sure you should do that?

24. But I love it when people: laugh with me instead of at me

25. My favorite motto, scripture, quote that gets me through tough times is: pain is inevitable, misery is optional. no rain, no rainbow.

26. When someone is diagnosed I’d like to tell them: work with your doc as a team, watch out for bad advice on the internet, it's not your fault, diet is only part of the answer, don't be afraid to try remicade/biologics, only you know when/if surgery is right for you.

27. Something that has surprised me about living with an illness is: how helpful some people can be. i always have trouble asking for help, and while some folks are jerks, most are really understanding. everything is easier when you have a good story and can laugh about it later.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me slurpees!

29. I’m involved with Invisible Illness Week because: I have one.

30. The fact that you read this list makes me feel: warm and fuzzy, and wondering how many others out there might be helped by frank discussion of hidden illnesses.