March Madness, MS Awareness, and Medical Anniversaries
March is a month full of anniversaries, celebrations, and awareness galore. Some worth celebrating, some worth acknowledging, and some worth forgetting.
Twelve years ago on the second Tuesday of March, I woke up with my eyesight fading. I was losing field of vision and colors were becoming dull and faded. Starting with my own eye doctor, I visited three doctors, each with a slightly different specialty involving the eyes, in three different cities...all in one day.
It was the third doctor, a neuro-opthalmologist, who told me that I was going blind in my right eye. My vision had been getting worse and worse throughout the day. Sure enough by the next morning, the right side of my world was a wall of gray. This would be my first serious experience with multiple sclerosis in the form of optic neuritis. But even then I was not “aware” of the disease. My vision returned about two months later, but I still have residual damage.
Eight years ago on the last Thursday of March, I visited my primary care doctor and complained that my “hands didn’t feel right.” I was worried that I might be developing lupus like my mother. He ran some blood tests. Results: ANA was negative, RF was 5.3, TSH was 3.2, and SED rate was 31. I was fine, he said. Three years later, I would eventually be diagnosed with rheumatoid arthritis.
Four years ago on the third Tuesday of March, two of my beautiful cats, Musette and Pippin, were born in the home of one of my piano students. However, I was busy fighting a major MS relapse which was taking away the strength in my legs. I could not rise from a seated position without some serious pushing and pulling. My thighs were simply spectators. My SED rate was 20 and my C-reactive protein was the highest it’s ever been at 13. I was definitely much too aware of my MS at that time.
This year on the first Tuesday of March, I was honored to be the official blogger of the 21st Annual National MS Society Public Policy Conference in Washington, D.C. After two days of educational and inspiring sessions, more than 325 MS Activists took our message to Capitol Hill asking lawmakers to support the Lifespan Respite Care Program and to increase funding for MS research.
Being able to visit our Representatives and Senators was thrilling. Speaking with their Legislative Assistants was also an honor. A final request to lawmakers was for them to join the Congressional Multiple Sclerosis Caucus. As a result, the Caucus grew by 15 members. There will now be increased awareness of issues affecting persons living with MS, chronic disease, and disability year round in Washington, D.C.
Each year at the public policy conference, the National MS Society recognizes elected officials who work to improve the lives of people affected by multiple sclerosis and continue to support the Society and its policy priorities. U.S. Representative Barbara Lee (CA-9), an instrumental member of the Congressional MS Caucus and author of the first-ever annual Congressional Resolution honoring MS Awareness Week, was recognized as the Society’s 2011 Representative of the Year.
Representative Lee authored the Adult Day Achievement Center Enhancement Act (H.R. 883) and has been a vocal supporter of increased MS research at the National Institutes of Health (NIH) and through the Congressionally Directed Medical Research Program (CDMRP). Having a personal connection to MS, Representative Lee spoke on the Congressional floor to raise awareness of the issues facing African Americans living with MS. Her presentation and acceptance speech at the conference were inspiring.
This year National MS Awareness Week is March 12-18, 2012. And, the entire month of March is deemed MS Awareness and Education Month by the Multiple Sclerosis Foundation. If you look at the profiles of my friends on Facebook, you will see lots of orange.
Orange is the awareness color of MS. Go Orange!
This year in May, not March unfortunately, we will celebrate the first annual Autoimmune Arthritis Awareness Day on May 20, 2012. Did you know that purple and blue are the awareness colors for RA?
Tomorrow is St. Patrick’s Day. I’m a bit Irish in the ancestors. Perhaps I should dress up in a rainbow of colors - orange, green, purple and blue - in honor of my health and heritage. That would surely garner some attention and that’s what awareness weeks and days are all about - getting people’s attention!
So what do you do to help spread awareness of your disease? The more we talk about living with MS or RA or depression, the more we can educate others.