Sunday, September 11, 2011

MEME: "30 things about my invisible illness"

Monday 9/12 is day one of "Invisible Chronic Illness Awareness" week.

Here is my contribution for the day:

1. The illness I live with is: Crohn's Disease
2. I was diagnosed with it in the year: 1982
3. But I had symptoms since: Wow. Hard to remember. At least a few years before my diagnosis.
4. The biggest adjustment I’ve had to make is: Learning to not take on too much at one time. Sometimes I fear that people think I am lying when I say I'm sick, because I may look perfectly fine, which makes it tough for me to say "no".
5. Most people assume: I am not sick unless I look sick.
6. The hardest part about mornings are: Depends on the day/week/month. If I'm not feeling well in the morning it's usually due to nausea and/or diarrhea. 
7. My favorite medical TV show is: I don't watch any medical shows, although I do have fond memories of Diahann Carroll in the 60's sitcom Julia.
8. A gadget I couldn’t live without is: My turntable. I'm a vinyl music geek, and I often turn to my records to get through tough times.
9. The hardest part about nights are: Dealing with pain from something I ate (which sometimes can be ANY solid food).
10. Each day I take __ pills & vitamins. Let's just say I takes a lotta pills.
11. Regarding alternative treatments I: Think everyone has a right to explore all of their options until they find what works best for them. Different treatments work differently for different people.
12. If I had to choose between an invisible illness or visible I would choose: Fantastic question! One good thing about invisible illnesses is that I have control over deciding when/who/how I disclose my illness.
13. Regarding working and career: This is a challenge sometimes for sure. The worst symptom for me to deal with at work is probably fatigue. It's been a while since I've dealt with horrific cramps from my Crohn's, since I'm currently in remission. I still deal with occasional bad days, and sometimes I may have a bad week. So yes, my illness has its impact on my work life.
14. People would be surprised to know: I'm a pretty open book, so there's not much I could share that would surprise anyone!
15. The hardest thing to accept about my new reality has been: Well, my new reality isn't quite so "new" - I have lived with my illness longer than without. Crohn's has been my reality for most of my life, so that's my reality.
16. Something I never thought I could do with my illness that I did was: Run a 5K. I was the 2nd to the last runner to finish, and the last dude was on crutches, but I finished!
17. The commercials about my illness: I like to see commercials about inflammatory bowel disease (IBD). It puts Crohn's in the public eye and can help reduce how much I have to explain to people.
18. Something I really miss doing since I was diagnosed is: Living life without a chronic illness!
19. It was really hard to have to give up: Not having to worry about my health and/or impending flare-ups or relapse.  Since Crohn's is so unpredictable, there are some things over which I simply have no control.
20. A new hobby I have taken up since my diagnosis is: Meditation. 
21. If I could have one day of feeling normal again I would: I do have some days of feeling "normal", although I must question what "normal" is, since my normal has been 'Crohnie normal' for most of my life.
22. My illness has taught me: The value in slowing down. Peace can be found in solitude and down-time, even if you feel like shit at the time.
23. Want to know a secret? One thing people say that gets under my skin is: "I wish I had Crohn's so I could be skinny like you!"  SERIOUSLY?  Yes people have said this to me.
24. But I love it when people: Politely acknowledge when I'm having a rough day. A simple "Sorry you're feeling so shitty" goes a long way.
25. My favorite motto, scripture, quote that gets me through tough times is: "All Things Must Pass" ~George Harrison
26. When someone is diagnosed I’d like to tell them: Learn everything you can about the disease and all of the treatment options. Make use of online communities. Trust your instincts -- you know your body better than your doctor does! If a Dr's recommendation doesn't seem right, go get a 2nd opinion!
27. Something that has surprised me about living with an illness is: There are hidden rewards such as resilience, a strong spirit, and increased self-knowledge. I am proud to identify as a Crohn's survivor - it is part of who I am. 
28. The nicest thing someone did for me when I wasn’t feeling well was: I had work colleagues, fellow teachers, that took on extra work for me when I was out sick.  They did this not because they had to, but because they cared and wanted to help.
29. I’m involved with Invisible Illness Week because: It is an opportunity, if just for a week, to give some visibility to my illness.
30. The fact that you read this list makes me feel: Thankful.


Penny Jo Rosenthal said...

I have learned so much from you Jeff! Thank you for sharing yourself and causing me to think about what I can't see.
Peace and Love,

Captain Sketchy said...

A close friend of mine has crohn's so I understand what you are dealing with. Does sciatica count as an 'illness'? That's my personal cross to bear, also invisible and often quite debilitating, but hey, we keep on keeping on...

Patrícia said...

Não tenho crohn, mas sou portadora de colite ulcerativa, Jeff. Há cinco anos me juntei a um grupo de portadores de crohn e colite. Isso me fez perceber o quanto somos fortes. Lidar com nossa realidade não é algo realmente fácil, mas sempre conseguimos vencer as crises.
Gostei muito de seu blog!