Invisible Illness Week begins on Monday, September 14th at 9 AM. It’s a virtual conference and the schedule is for the whole week, ending on September 20th. This conference supports those of us who are chronically ill but don’t have outward signs of our illness. There has never been more of an important time, in my opinion to take part in National Invisible Chronic Illness Awareness Week than now. Thank you to Lisa Copen who coordinates this event every year.

Since congress is making a decision on Health Care Reform, let our voices be heard! We are often the ones who pay high prescription costs, get denied Social Security Disability even though we cannot work so we go without insurance, and/or get denied insurance because of pre-existing conditions.

Please watch Marianne Hoynes, who has Sjogren’s Syndrome and Rheumatoid Arthritis as she attempts to speak at a town hall meeting on Health Care Reform:

It was noted that many people could not see that Marianne was not in a wheelchair. So even those of us who have “visible traits” of a sickness are not given the right to speak out on issues that matter to us all.

We all matter.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myasthenia Gravis, Sjogren’s Syndrome, Fibromyalgia, Rheumatoid Arthritis and Ulcerative Colitis.
2. I was diagnosed with it in the year: with UC in 1985, with MG in 2000, the rest 2001 or the year later.
3. But I had symptoms since: 19844 for the UC
4. The biggest adjustment I’ve had to make is: not being able to work and giving up my active lifestlye
5. Most people assume: I’m not sick
6. The hardest part about mornings are: waking up because I’m so tired
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: pain and insomnia
10. Each day I take __ pills & vitamins. (No comments, please) 36
11. Regarding alternative treatments I: am not able to try them because of the medications I am on for Myasthenia Gravis. There are many interactions for a certain prescription I take.
12. If I had to choose between an invisible illness or visible I would choose: visible so more people would understand
13. Regarding working and career: I’m sad that I can’t continue working in the career I chose for myself. I’m happy that I can work as a blogger though.
14. People would be surprised to know: that I’m in pain almost all the time.
15. The hardest thing to accept about my new reality has been: that I have to rely on other people for simple things.
16. Something I never thought I could do with my illness that I did was: attend a conference.
17. The commercials about my illness: re: Fibromyalgia and RA - make it seem like a pill or shot cures the disease.
18. Something I really miss doing since I was diagnosed is: dancing, drinking  a few beers, running, walking as much as I want to
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: blogging and photography
21. If I could have one day of feeling normal again I would: spend it with my family, listening to loud music, dancing, cooking and eating all day long
22. My illness has taught me: to appreciate every moment
23. Want to know a secret? One thing people say that gets under my skin is: you look great!
24. But I love it when people: recognize that most of the things I do take me a lot of effort
25. My favorite motto, scripture, quote that gets me through tough times is: I can do all things through Christ who strengthens me. Philipians 4:13
26. When someone is diagnosed I’d like to tell them: find a doctor who is supportive and knowledgeable and a support system
27. Something that has surprised me about living with an illness is: how understanding my husband and family are
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter, who was much younger for play dates so she didn’t have to sit home while I slept
29. I’m involved with Invisible Illness Week because: it’s so important for people to understand about us, what our lives are like, what we go through each day and how they can support us
30. The fact that you read this list makes me feel: fantastic!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Sjogren’s Syndrome has been hitting me really bad lately. I guess it has to do with the lack of sleep and a lot of blogging. The computer monitor hurts my eyes a lot. And not sleeping puts me into a flare. Plus not being on Humira has my immune system in havoc.

One thing I know that I need to do is to upgrade the indoor lighting in my home office. That will help my eyes a lot. I need a good desk light and some better lighting over all.