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

Lisa Copen is a force to be reckoned with. Although she has Rheumatoid Arthritis and Fibromyalgia, she is the leader of the National Invisible Chronic Illness Week aka Invisible Illness Week. She also runs Rest Ministries, which is an online support group for people with chronic illness.

Lisa was diagnosed at 24 with Rheumatoid Arthritis so she can understand what it is like to be a young person facing a life long disease. She feels exhausted a great deal of the time and her hands and feet hurt most of the time. In fact right after last year’s Invisible Illness Week, she had to have surgery on her foot. She continues to have issues with infections as well as the ongoing pain.

Although Lisa is found everywhere on the web, she does have a personal life too. She is married and has a 6 year old son. She openly shares about the struggles she goes through on a daily basis, but those issues are tempered with her strong Christian faith and the support she receives from her family and friends both online and in real life.

Invisible Illness Week is September 14 - September 20th this year. It will be an online conference like last year, held on Blog Talk Radio. This allows people from all over to attend, as well as those who may be unable to due to sickness. Some of the speakers and topics this year include:

• Coping with Chronic Illness in Your Marriage with Bill & Pam Farrell
• Can Versus Should: Pregnancy, Children and Chronic Illness with Laurie Edwards
• Applying and Winning Disability Assistance When You Are Chronically Ill with Scott Davis
• Being a Teenager with a Chronic Illness with Naomi Kingery

There will be time for phone calls, questions and chances to win prizes. There are many ways that you can help. For example, you can blog about II Week, donate a prize, or hand out brochures.

Lisa Copen leads by example. Being chronically ill herself,  she volunteers to provides awareness about a subject (Invisible Illness) that many people do not understand or even knows exist.  She shares her personal struggles and her triumphs. She has a sense of humor about what comes her way.

She supports others in similar situations through her online work, her empathy and her kindness. She is always willing to share the limelight and gives credit to those who assist her in her work.

One of Lisa’s favorite scriptures that she hopes encourages others is “My comfort in my suffering is this: promise preserves my life.” Psalm 119:50

This is an ongoing effort to spotlight people with chronic illness, health issues and disabilities who are making a contribution in some way despite their pain, sickness, etc.

Imagine having an eBook library at your fingertips. One that you can search by topic or title. I was able to find information on health topics, something that I normally research online. I put in the topics chronic illness, myasthenia gravis and sjogren’s syndrome. Not only did a large amount of eBooks come up, but also more specific topics in these categories. For example, with sjogren’s syndrome, I found “sjogren’s syndrome symptoms” that was clickable.

The eBooks are in pdf, word, rtf and ppt files, but can be accessed in html form. I was able to easily Search for any eBook because this database is huge. I was extremely pleased with the information I found.

Mesothelioma is a cancer that has as its main cause exposure to asbestos. Asbestos is no longer used in construction in the United States, but there are some older buildings that may still contain it. Due to research about this form of lung cancer, asbestos is now removed with workers using equipment that protects them from breathing in the dust and particles and bringing any of those home to contaminate others or their own dwelling.

In the past, however before the danger was known or before employers made workers aware of the risk of working with asbestos, many people and their families were affected. Some types of workers in these situations are:

• Drywall Installers
• Elevator Mechanics
• Military Workers
• Pipefitters
• Steel Workers
• Ship Yard Mechanics
• Welders

There are many other employees including teachers and other people working in schools, tile workers, painters and carpenters. Quite often the diagnosis did not occur until years after their work ended either through retirement, leaving their job to work elsewhere, bankruptcy, etc. The sad part of this scenerio is that the asbestos manufacturers were aware of the danger but did not produce evidence until OSHA made this information available in 1971.

People who have been diagnosed are entitled to compensation. Family members of those who have died are also entitled. Since this type of law suit is so specialized it is imperative to procure a Mesothelioma Lawyer who is knowledgeable, experienced and has an excellent track record in these type of cases. You don’t want to deal with an attorney who will cause you more stress in an already stressful situation.

Since April is Sjogren’s Syndrome Awareness Month, I thought I’d write a little about what it’s like to live with this disease.

• My Diagnosis: I began complaining of dry eyes and a very dry mouth to my Rheumatologist shortly after being diagnosed with Fibromyalgia. I was having other health problems at the time but although my blood work showed a high ANA, nothing could be determined. I also was already diagnosed with Myasthenia Gravis, Ulcerative Colitis and Anemia at that time. When he say my tongue he was shocked.  He recommended that I visit an ENT to get a diagnosis and an Opthamologist. The ENT refused to do a lip biopsy because he was concerned about my healing. The Opthamologist saw how  dry my eyes were. We tried OTC artificial tears first. When they did nothing to relieve the dryness, he inserted tear duct plugs. Within 2 months both doctors decided to diagnos me with Sjogren’s without the blood work because I had the hallmark symptoms of this disease.
• My Treatment: I am now using Restastis, have two tear duct plugs in each eye (this varies as my dry eyes can get better at times), use OTC artificial tears, gel at night and take prescription form of Folic Acid. I can’t eat spicy foods at all and drink a lot of water every day. I see the dental hygienist 3 times per year and the dentist twice. I go to a dermatologist 3 times a year partly because of my severely dry skin. I wear sunglasses when ever I am outdoors (even if it is cloudy). And I see my Rheumatologist every 2 weeks for B12 shots. (please note that this is also due to my other diagnoses)
• How I Feel: Sometimes my eyes hurt because they are so dry that they feel like I have sand in them. I am frequently tired. My mouth is always dry, along with my lips. I have bad gums and cavaties even though I brush my teeth 3 times per day. My skin is dry and flaky and I sunburn easily.  I have other symptoms but because I have other diseases it is hard to distinguish what causes what.
• What I Do To Help Myself: I laugh a lot, especially about myself. I try to think positively and surround myself with positive people. I do things that I enjoy. I sleep when I need to and try not to overwork. I keep updated on all of the new information about Sjogren’s.
• What I Do To Help Others: I try to educate people about Sjogren’s and about all autoimmune diseases. Please share that this month is special to me and a lot of other people too!