In Anticipation of Invisible Illness Week

September 14-20 2009

Thanks to the many bloggers who are participating I am now aware of Invisible Chronic Illness Week. For more information on what an Invisible Illness is, and how many people are affected by these afflictions, go to invisibleillnessweek.com

I've decided to fill out the following list, as I have learned a lot reading the lists of others. Hope mine makes sense as The Headache has been really intrusive this evening. I'm thinking it may be the weather...

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: hemicrania continua ( I have many more, but I'm tring to simplify this a bit)
2. I was diagnosed with it in the year: Hemicrania Continua 2008
3. But I had symptoms since: hemicrania continua 2007 (although I had "common" migraines from 1976 - 2004)
4. The biggest adjustment I’ve had to make is: knowing that there is a limit to the pain I can tolerate and trying to adjust my life and medication to control the pain and still feel productive.
5. Most people assume: that I am as healthy as a short chubby pony, maybe a tempermental Shetland Pony that children won't ride because it bites and tries to scrape them off on low hanging limbs...I don't think I qualify for healthy as a horse....
6. The hardest part about mornings are: trying to function with little or no sleep and falling asleep at odd moments when I am trying to get dressed.
7. My favorite medical TV show is: Dr. G Medical Examiner
8. A gadget I couldn’t live without is: a potato peeler - otherwise I carve away all the potato with the skin...
9. The hardest part about nights are: pain at 2AM to 3AM, and not sleeping.
10. Each day I take 8 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried a few, were not any more effective than any other treatment.
12. If I had to choose between an invisible illness or visible I would choose: the invisible illness. Having been friends with persons with visible illnesses I don't know if I would have their bravery to deal with people in general and their misconceptions. With an invisible illness I can be perceived as healthy when walking through crowds or meeting new people. Visible illnesses don't give you that option.
13. Regarding working and career: I am glad I have such wonderful bosses because it has been a struggle to work at all these last two years.
14. People would be surprised to know: at one time I was a fine art major in college and love art history and am a pretty good draftswoman..
15. The hardest thing to accept about my new reality has been: my fear of extreme pain. I'm not normally a fearful person, but there are realms of pain I don't want to go back to ever.
16. Something I never thought I could do with my illness that I did was: get into a national study for occipital stimulators for headache pain. Woo Hoo!
17. The commercials about my illness: don't exist. There aren't too many of us out here yet.
18. Something I really miss doing since I was diagnosed is: swimming - exercising is a huge problem for me as it exacerbates the hemicrania continua pain, even with my occipital stimulator. Sigh...
19. It was really hard to have to give up: my feeling of invulnerability
20. A new hobby I have taken up since my diagnosis is: blogging - it's a great distraction.
21. If I could have one day of feeling normal again I would: take a flight to a Carribean island and bask in the sun and play in the surf.
22. My illness has taught me: I have limits.
23. Want to know a secret? One thing people say that gets under my skin is: you look as bad as I feel. All you can think is - I look bad??? or are they feeling really good? Sooo confusing.
24. But I love it when people: give me information/advice about headaches. You never know when you will learn something new! I found out that mosquitos don't like it when you take too much niacin - a fantastic summertime tip that didn't help the headache, but was interesting.
25. My favorite motto, scripture, quote that gets me through tough times is: The 23rd Psalm:
The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name' sake.

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.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.
26. When someone is diagnosed I’d like to tell them: keep trying specialists until you find one that actually communicates with you and has some sense.
27. Something that has surprised me about living with an illness is: how quickly it takes over your life.
28. The nicest thing someone did for me when I wasn’t feeling well was: sit for hours in the emergency room and driving me home in the wee hours of the morning.
29. I’m involved with Invisible Illness Week because: its a fantastic education effort to bring awareness of invisible illnesses to the forefront.
30. The fact that you read this list makes me feel: glad I decided to participate.