Monday, November 15, 2010

Couldn't pass this up!

I found a great website about invisible chronic illness while conducting research for my book. The organization is a Christian organization and it's mission is invisible chronic illness. Here's the link:
There are 30 questions about invisible illness on the site and I am going to answer them here for you:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Hepatitis C
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: Dec. 2005
4. The biggest adjustment I’ve had to make is: Not working full time; missing out on many important events and not having the income to help my kids through college as we had planned.
5. Most people assume:I am doing well as I do not appear ill.
6. The hardest part about mornings are: Everything is hard. Just getting out of the bed can be challenging as I have a lot of muscle, joint and body aches.
7. My favorite medical TV show is: I don't watch TV
8. A gadget I couldn’t live without is: My Amazon Kindle
9. The hardest part about nights are: Sleeping the whole night through without pain or nausea.
10. Each day I take 3 pills & vitamins.
11. Regarding alternative treatments I: Tried them in January 2010 and they made my condition worse, which happens 1% of the time in people with HCV.
12. If I had to choose between an invisible illness or visible I would choose: Visible, that's easy. People are more likely to offer compassion.
13. Regarding working and career: I have very limited energy, so my jobs are generally "work from home."
14. People would be surprised to know: That I have many days that I feel so terribly alone and like nobody understands.
15. The hardest thing to accept about my new reality has been: I am never going to get better, I will become more sick and there is little hope.
16. Something I never thought I could do with my illness that I did was: Spending more time alone, which is something that I now need/crave. I also went skydiving twice!
17. The commercials about my illness: I've not seen any.
18. Something I really miss doing since I was diagnosed is: Taking long, strenuous hikes; social events, visiting my kids.
19. It was really hard to have to give up: Working.
20. A new hobby I have taken up since my diagnosis is: Painting and writing poetry.
21. If I could have one day of feeling normal again I would: Hike all day, somewhere I've never hiked before that is known to be beautiful.
22. My illness has taught me: To accept my life as it is; it's in God's hands. And, to pace myself by listening to my body.
23. Want to know a secret? One thing people say that gets under my skin is: "you look great!"
24. But I love it when people: call, send notes or card, or best yet - offer to help me do something I find difficult to do by myself.
25. My favorite motto, quote that gets me through tough times is: "Don't let them take away who you are." For me this has dual meaning; "them" are unsupportive people and my disease.

26. When someone is diagnosed I’d like to tell them: I'm here for you 24/7 and I truly understand.
27. Something that has surprised me about living with an illness is: I am still alive and remain as productive as possible.
28. The nicest thing someone did for me when I wasn’t feeling well was: Loan me her cleaning lady for a day, who cleaned my entire house and my friend paid her. Second, I had a friend drive me to visit my daughter at the University, which is 2-1/2 - 3 hours away.
29.. The fact that you read this list makes me feel: Like you care.