Tuesday, November 9, 2010

National Invisible Chronic Illness Awareness

Ok, so technically the observation week occured back in Sept., the 13-19 to be exact, BUT I just found this and wanted to participate. Im not even sure CF can be considered an "invisible illness" but by all accounts it should qualify b/c you can look at me and "see" something wrong. So, here we go.

30 things about my invisible illness you may not know.....

1. The illness I live with is: Cystic Fibrosis
2. I was diagnosed with it in the year: 1985
3. But I had symptoms since: I've never been without them, it has always been normal.
4.The biggest adjustment I’ve had to make is: It has been different during different stages of my life. As a child I was very selective who I spent my time with in regards to friends bc some of the symptoms can be embarassing. Growing up it was just constant doctor visits, and during my teen years my diet adjustment was the biggest deal. Now that I've been hit with more of the respiratory issues of CF, I have to watch I dont get overexerted doing "normal" things like running errands or playing with my son, but that is geting better every day.
5. Most people assume: Hmm, Im not sure...most of the time people are very surprised to find out I have CF
6. The hardest part about mornings are: coughing up yucky crap
7. My favorite medical TV show is: Anything on Discovery Health. I like true, unusal cases and stories.
8. A gadget I couldn’t live without is: In regards to CF, or in general? For CF, it would probably have to be my inhaler.
9. The hardest part about nights are: Again, coughing up yucky crap and just breathing in general.
10. Each day I take __ pills & vitamins. Now, I only take one pill on a regular basis because my digestive stuff is under control with diet; however growing up I easily took 20 pills a day. I really should be on more now though. Im horible at remembering to take pills.
11. Regarding alternative treatments I: Think they can work if you find the right one. I do pilates for my breathing.....yeah, I love the muscle tone benefit as well, but I notice a huge difference in my breathing when I do it regularly.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, it's all I know.
13. Regarding working and career: I used to not think about how it impacts my career, but more recently it has. Just recently I gave up education on a nursing career because the direct patient care was constantly keeping me sick and I was missing a lot of work. Working nights hurts my health too, more than the average wear and tear.
14. People would be surprised to know: No surprise, but Im really stubborn about my disease.
15. The hardest thing to accept about my new reality has been: That I am actually sick. Although I have lived with CF my entire life, it has more recently caused me problems that bring my reality to the forefront of my life. Most days I dont feel sick, and for that I am thankful.
16. Something I never thought I could do with my illness that I did was: conceive, birth, and breastfeed my son.
17. The commercials about my illness: None
18. Something I really miss doing since I was diagnosed is: I cant' answer this....however I have never not done something on a normal basis bc of CF.
19. It was really hard to have to give up: My education and career in nursing. I still have a bachelor in Science, but I wanted more.
20. A new hobby I have taken up since my diagnosis is: CF is the reason I started pilates. I love it.
21. If I could have one day of feeling normal again I would: Well, I am lucky to feel normal a lot more than most, but I would greatly appreciate a day without coughing....not sure what I would do special though. Run a marathon maybe? haha
22. My illness has taught me: Perspective
23. Want to know a secret? One thing people say that gets under my skin is: Nothing really. There isn't a lot to say about CF.
24. But I love it when people: Say how healthy I seem.
25. My favorite motto, scripture, quote that gets me through tough times is: Music gets me through anything. Especially Christian.
26. When someone is diagnosed I’d like to tell them: You aren't alone, treatments are better all the time, and I truly believe a cure will be found.
27. Something that has surprised me about living with an illness is: How normal it is.
28. The nicest thing someone did for me when I wasn’t feeling well was: My friends and family lift me up in more ways than I can count.
29. I’m involved with Invisible Illness Week because: N/A
30. The fact that you read this list makes me feel: Like you care

1 comment:

Jen said...

It's good to hear from you! It is interesting to hear about your experience with CF since you so rarely mention it.