As some of you know, I’ve sat on the Arthritis Foundation Leadership Council Board here in Chicago for a few years now. In that time, I’ve met a lot of really wonderful people who share a common passion… To spread awareness of and eventually find a cure for Arthritis; in all of its nasty forms. Speaking of which, there are currently more than 100 different forms of Arthritis recognized by Rheumatologists throughout the world.
Among some of the inspirational people I’ve met along the way is Courtney Smith, the producer of the award winning documentary Beauty Does Lie: The Untold Stories of Autoimmune Diseases. Courtney was diagnosed with Myasthenia Gravis (MG) at the tender young age of 22. MG is a neuromuscular disease that produces antibodies which block muscle cells from receiving messages from Courtney’s nerves. At times, she is physically paralysed and her body is unable to move or respond because of this blocked communication between the muscles and nerves. Fatigue and muscle weakness are an everyday reality of Courtney’s life. But even after a series of life threatening trials and tribulations, all who know Courtney, know that she remains to live an incredibly happy, upbeat life.
I have recently had the pleasure of being asked to team up with Courtney to co-author her memoirs. I have to say I am beyond smitten with the opportunity. We plan on weaving Courtney’s tragic story into one that will make readers laugh, cry and ultimately be inspired by her incredible, almost unbelievable life story. I will keep you posted as I dive into this exciting project with Courtney. Wish us both luck and send some extra spoons our way. I have a feeling we’re going to need them.
According to the Mayo clinic definition, Rheumatoid Arthritis is an autoimmune disorder which “occurs when your immune system mistakenly attacks your own body’s tissues. In addition to causing joint problems, rheumatoid arthritis can also affect your whole body with fevers and fatigue”.
Let’s think about this for a moment… That means my immune system really attacks my own body’s tissues? Yes, once you are diagnosed with this debilitating disease, you learn that your body will constantly fight YOU for the rest of your life. Imagine that… Your body has no control of your body. Scary stuff.
In my case, pain moves throughout different joints in my body, but it does so symmetrically. So if my left wrist is in agonizing pain, my right wrist is sympathetic and the pain in my right wrist becomes excruciating too. The same is true in my toes, my fingers and most often.. my hips. My hips burn constantly. When my disease flares up in my hips, knees or ankles, I can barely walk let alone make my way up the stairs to my second floor bedroom. When my fingers are affected, it’s impossible for me to wash my hair, brush my teeth or button my own fly. Thank God leggings are back in style!
While it’s true that research and medicine have come a LONG LONG way over the past 5-10 years, they haven’t yet come far enough. I started trying various drug cocktails about five years ago now. From Methotrexate to Prednisone to Humira to Enbrel to Sulfasalazine to Naproxen to Vicodin to Celebrex and still no 100% relief?! Unbelievable. My current flavor of the week is a combination of Humira, Methotrexate and Sulfasalazine. Who knows what’s next? My doctor recently mentioned Orencia which is given through transfusions once a month. Sure, I’ll find the time to spend an entire day at the doctor’s office once a month between working all day and going to school in the evenings…
All of that being said, I’m starting to get the feeling that I’ve painted myself as an absolute pessimist between my last two blog entries. I promise you dear readers, that is not the case. In fact, it’s amazing what happens to people when God throws some obstacles in their way. Nothing is impossible! More on that later.