Wednesday, September 09, 2009

30 Things you may not know

In honor of annual National Invisible Chronic Illness Awareness Week, or Invisible Illness Awareness Week, I figured I'd participate in a little meme they had up on their blog.  I think it's kind of fun, and as you know I'm really trying to promote being "open" about everything, so here goes!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
Primary sclerosing cholangitis (end-stage) and fibromyalgia

2. I was diagnosed with it in the year:
February 14, 1992 and January, 2009, respectively

3. But I had symptoms since:
My memory ever began.  Barely-5 is too young to remember an entire life before.

4. The biggest adjustment I’ve had to make is:
I don't remember "not being sick," so I'm not sure how to answer this.  I am bitter, however, that my desire to change the world has been a little dampened.

5. Most people assume:
I'm lazy, full of excuses, or even that I'm so healthy and vivacious.  If only they knew.

6. The hardest part about mornings are:
Getting up - not just waking up - but getting up, out of bed, and finding enough energy to do something productive

7. My favorite medical TV show is: 
Grey's Anatomy - and definitely not because it's accurate!!

8. A gadget I couldn’t live without is:
My iPhone and 3 Macs.  

9. The hardest part about nights are:
The endless loneliness.  I cannot marry my fiance of 2 years because we don't have health insurance.

10. Each day I take __ pills & vitamins.
3 + 3 + 1 + 1 +1 + 1 +5 + 2 + 3 + (3, 4 + 1 + 2) = 20 bare minimal, or, on a semi-bad or bad day, over 30. Oh, and 2 liquids. 

11. Regarding alternative treatments I: 
Go to cognitive behavioral therapy, massotherapy, listen to progressive relaxation CDs, practice box breathing/deep breathing, and will start acupuncture in October

12. If I had to choose between an invisible illness or visible I would choose:
Neither.  Life is not supposed to be about illness.  If my illness were visible, more people would understand, yes, but on the other hand, I wouldn't be able to hide it when I wanted to.  Sometimes - just sometimes - it's nice to forget you're sick.

13. Regarding working and career:
Going by how I am now, I will not be able to work full-time.  I sometimes wonder why I'm so feverishly pursuing my education if I may one day live in the terrible place of knowing that I want to do something and am equipped and ready to do it, but afterall, cannot because of my health problems

14. People would be surprised to know:
I need a new liver.  Sometimes I scream and cry like a toddler.  I do not have a single answer.  All I want to do is be held and told "Everything will be okay."

15. The hardest thing to accept about my new reality has been:
How unfair life is to those with illnesses.  Not just things like "it shouldn't have happened to me!" but things like laws, policies, support, lifestyle, even the inherent loneliness.

16. Something I never thought I could do with my illness that I did was:
Travel through Europe (2005), Walk through Disney World (May, 2009)

17. The commercials about my illness:
Do not exist.  And thank God for that.  No one's symptoms are ever like the drug commercials.

18. Something I really miss doing since I was diagnosed is:
Having anything even of a slight resemblance to a childhood.

19. It was really hard to have to give up: 
My life, my dreams

20. A hobby I have taken up since my diagnosis is:
Scrapbooking because it is life-affirming and keeps me grounded.  This moment is here for only a single instant.  You'll never have it back.

21. If I could have one day of feeling normal again I would:
Cry and thank God and make my fiance take off of work and well, I'd be so excited I wouldn't know where to start!

22. My illness has taught me:
Life is short.  Life is a gift.  Each moment flies away.  Each feeling or emotion or idea is only a sheer element comprising a bigger picture.  Focus on tiny things like love, laughter, hope, sharing.  Together, they'll make up a beautiful life.

23. Want to know a secret? One thing people say that gets under my skin is:
Anything that comes with a tone of voice indicating that they think I should be done with being sick because it's an inconvenience to them or indicating whatever I just said is just an excuse on my part.

24. But I love it when people:
Ask me how I'm doing, take a second to check how my test went or how my office visit went.  I like when close friends want to talk about it.  To me, that means acceptance.  Also, I'm humbled on the rare occasion that someone wants to offer their time and just come help me "get things done."  

25. My favorite motto, scripture, quote that gets me through tough times is:
Yea though I walk through the valley of the shadow of death, I will fear no evil for thou art with me. Thy rod and thy staff, they comfort me.

26. When someone is diagnosed I’d like to tell them:
Hold onto hope.  Pray.  Forget about the trivialities of life.  Live like you're dying tomorrow, because in all honesty, it doesn't take a chronic illness to cut your life short.  You may die in an accident before you even hear if your test indicated cancer.  Live, live, live.

27. Something that has surprised me about living with an illness is:
Once you're this far, there are no surprises.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Stayed with me

29. I’m involved with Invisible Illness Week because: 
I know what it's like to suffer in silence, so I hope to help break that silence.

30. The fact that you read this list makes me feel:
Honored ... because you gave me a gift you can never get back - a few moments of your time just to hear my story.  Thank you

This year, IIA Week is September 14-20. Check out the main site for all of the articles, conferences, and chats that will be coming up!