National Invisible Chronic Illness Awareness Week

24 08 2010

“It’s ba-ack! To prepare for National Invisible Illness Awareness Week (September 13-19, 2010), the much-loved and inspiring “30 Things” survey is back. Every year we live is a year’s worth we’ve learned, so be sure to read and answer again, as many things have been updated, changed, or developed! Remember to fill it our yourself, repost, etc, and if you do post your own link it back to Lisa! You may recall, I began this blog ast September as part of National Invisible Chronic Illness Awareness Week (IIAW). Well, it’s nearly that time again! This year, the National week will be September 13-19, 2010! As part of the kickoff, Lisa Copen (founder of both IIAW and Rest Ministries) has brought back the HUGELY popular survey about our unique experiences with chronic illnesses. I encourage you to fill this out for yourself (no matter what diagnoses you may have) and repost. If you do, remember to put a link to your post on Lisa’s IIAW website!”

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Crohn’s Disease

2. I was diagnosed with it in the year: 1998. I was eleven.

3. But I had symptoms since: I was diagnosed pretty quickly. I don’t remember how long before that I’d had symptoms… maybe a year? I was really sick.

4. The biggest adjustment I’ve had to make is: How I spend time. I mean, I’ve spent over half my life living like this, but if I didn’t have Crohn’s, I would do a lot more. I look at my friends and how they do so much and sometimes I get jealous!

5. Most people assume: that a) I’m not that sick/exaggerating or b) that I’m on my deathbed.

6. The hardest part about mornings are: Mornings used to suck. Before my surgery I would have to get up at least an hour earlier than I normally would to budget time for being sick. In high school I was late to school more times than I can count because I was stuck in the bathroom.

7. My favorite medical TV show is: House! Even if he couldn’t fix me 🙂

8. A gadget I couldn’t live without is: I stole this from somebody, but a toilet. I plan driving routes, time spent, stores that I shop in, everything around access to toilets.

9. The hardest part about nights are: I used to get up every night to get sick. I had diarrhea and would have to get up and run. Now after my ostomy I get up every night at about 3am to empty my bag. Not too difficult compared to before!

10. Each day I take __ pills & vitamins. (No comments, please) — I take a vitamin, calcium, three azathioprine, three iron, and every two weeks a shot.

11. Regarding alternative treatments I: hate when people tell me about them. With everything I’ve been through medically please do not tell me that dirt will  cure me. Also true for chiropractors, massages, that thing with the needles in your skin.

12. If I had to choose between an invisible illness or visible I would choose: I’ve thought about this a lot. To have an invisible illness is so hard because I’m always fighting to get people to believe that it’s for real. There are so many people who think I’m imagining it or making excuses for things. To have a visible illness would give me instant credibility. But having a visible illness means to always have to broadcast the fact that you’re sick. I like being able to share that with who I choose. I guess I’d stick with what I’ve got!

13. Regarding working and career: Workin on it. I want to teach. I think I will teach someday. But right now I’m flaring off and on so I’m looking more into teacher aides… that gives me more flexibility on how much energy I need and how much time I’m spending in charge of a classroom. It honestly freaks me out. When I’m sick I have trouble getting out of bed.

14. People would be surprised to know: that sympathy isn’t always appreciated. There’s a difference between saying, “That sucks,” and between throwing me a pity party that makes me uncomfortable. I like to talk about what I’m going through, but usually in a funny way. Don’t tell me I’m inspirational… that’s not funny and it freaks me out. Humor is how I deal man!

15. The hardest thing to accept about my new reality has been: Limits.

16. Something I never thought I could do with my illness that I did was: Go to Ireland! I’ve never been out of the country because I didn’t think I could with how much I use the bathroom. After the surgery I was able to go for a week and enjoy it.

17. The commercials about my illness: Are ok.I get more of a stomach flu vibe than a debilitating disease vibe.

18. Something I really miss doing since I was diagnosed is: Eating fresh fruit. I remember sitting on the tailgate of our truck eating juicy peaches while reading a good book.

19. It was really hard to have to give up: cherries!

20. A new hobby I have taken up since my diagnosis is: reading in the bathroom. Seriously, now that I don’t have to spend so much time in there, I had to relook at my days to fit in reading time. Weird.

21. If I could have one day of feeling normal again I would: Do something really active. Go to a fair or on vacation or something and eat greasy food and fresh fruit and something spicy.

22. My illness has taught me: that I’m stronger than I look.

23. Want to know a secret? I have spent so much time in hospitals that I’m super comfortable in doctors offices and hospitals.

24. But I love it when people: Change plans for me when I’m sick. Like, let’s hang out and watch a movie instead of going to the city.

25. My favorite motto, scripture, quote that gets me through tough times is: God never gives me more than I can handle.

26. When someone is diagnosed I’d like to tell them: Life is still good!

27. Something that has surprised me about living with an illness is: that I think I build better friendships because of it. If people stick around when you’re sick, they’re worth it.

28. The nicest thing someone did for me when I wasn’t feeling well was: visit me in the hospital. I get pretty antisocial and grimy when I’m in there, and the people that take the time to drive all the way out to the hospital and spend time with me when I’m disgusting mean a lot to me.

29. I’m involved with Invisible Illness Week because: I think it’s important for people to be aware that suffering isn’t always visible.

30. The fact that you read this list makes me feel: I don’t know. This is a weird question. I guess I feel like the more people aware of Crohn’s and how terrible it is means that in the future we have a chance for the financial aid from people that breast cancer gets now. That could finance better treatments (PLEASE) and maybe someday something close to a cure.

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2 responses

27 08 2010
Rest Ministries

Thanks so much for participating. It’s amazing how much you can “feel” like you are getting to know someone by reading these 30 things.

28 08 2010
ostygirl

I agree! I found this survey from someone on facebook, and I immediately felt a kinship from everything we shared. People with diseases like this generally don’t share all of their struggles with the world, so it’s truly eye-opening to read a simple survey like this and get a more full view of who you’ve been talking to.

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