Saturday, July 16, 2011

National Invisibile Chronic Illness Awareness Week

is September 12-18, 2011. As a member of the group, I am going to participate fully, so let the party begin! We start by answering the following questions:
30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Hepatitis C
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005 (and subtle ones much earlier in retrospect).
4. The biggest adjustment I’ve had to make is: Not having the energy to do the things I was accustomed to doing.
5. Most people assume: I look well, and am therefore doing well.
6. The hardest part about mornings are: Waking up ill and realizing it is not a nightmare; it's real.
7. My favorite medical TV show is: I don't like any. As a NP, I'm too critical of errors!
8. A gadget I couldn’t live without is: My Kindle e-reader.
9. The hardest part about nights are: getting a full 8 hours of uninterrupted sleep.
10. Each day I take 6 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Have tried a strict regimen, under doctor's supervision. While taking herbals, my liver enzymes skyrocketed so they are not for me.
12. If I had to choose between an invisible illness or visible I would choose: Invisible; it makes it easier on my family.
13. Regarding working and career: I do what I am able but know I could never hold down a full-time nursing career again. This is a huge loss that I grieve daily.
14. People would be surprised to know: That I'm a very happy person!
15. The hardest thing to accept about my new reality has been: Not being able to make plans that I know I will be able to carry out when the time comes.
16. Something I never thought I could do with my illness that I did was: Learn to slow down, relax and enjoy each moment. I led such a busy, hectic lifestyle beforehand that left little time for "down time." I now also have the time to fully deepen my spiritual life.

17. The commercials about my illness: I've only seen one and it is about getting tested for HCV.
18. Something I really miss doing since I was diagnosed is: Hiking long distances.
19. It was really hard to have to give up: my career.
20. A new hobby I have taken up since my diagnosis is: art, poetry writing.
21. If I could have one day of feeling normal again I would: Take a long hike & go backpacking with my whole family.
22. My illness has taught me: Who my true friends are.
23. Want to know a secret? One thing people say that gets under my skin is: "You look so good!" I know they mean well as I've lost a great deal of weight and don't look sick. But the suffering I went through to lose that weight is not something I'd wish on anyone.
24. But I love it when people: Call me. It means so much just to get a call, or simple card. It's about the little things.
25. My favorite motto, scripture, quote that gets me through tough times is: "All shall be well, and all shall be well and all manner of things shall be well." St. Julian of Norwich.
26. When someone is diagnosed I’d like to tell them: You have no idea of the horrors ahead of you, but I would never say that; they need hope and assurance.
27. Something that has surprised me about living with an illness is: how difficult it has been for our family.
28. The nicest thing someone did for me when I wasn’t feeling well was: A friend came to stay with me over a weekend when my spouse was out of town and I was feeling quite ill at the time. She gave me a manicure and pedicure!
29. I’m involved with Invisible Illness Week because: To raise awareness of invisible illnesses.
30. The fact that you read this list makes me feel: Like you took time to care.