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.
Rheumatoid Arthritis is one of those infamous invisible diseases…if you’re lucky. If you’re lucky, the doctors diagnose you in a timely manor so physical aspects of the disease don’t begin to mutilate your body. If you’re not lucky, your fingers and toes begin to curl up and take on a new form which you cannot control. It repulses you to look at your own joints and limbs. You want to crawl into bed and cover your head without ever making a public appearance again. Unfortunately you can’t do this as you’re a single 23 year old girl with bills to pay.
You just graduated college so you are thousands of dollars in debt and living in an urban apartment that costs more than a half of your monthly salary. Just weeks ago you were jet skiing at a friend’s weekend cabin without a care in the world. The sun was shining down upon you, your hair was blowing wild in the wind and all you could think about was the promise of your bright future. You just landed your dream job at an advertising agency making a less than satisfactory salary, but hey you’re really MAKING it, right? That’s how it seems until you wake up one day, unable to move your shoulder. When you try to squeeze your hand or fingers together, you cry. You’re such a strong women, but you cry when squeezing your fingers together? What’s wrong with you? Why are you acting so weak?
The orthopedic specialist says it’s just tendonitis, wraps you in a shoulder splint and tells you to take it easy for a few weeks. The pain becomes so unbearable but you push back those tears, go to work and sit at your desk like a good worker bee for 55 hours a week. You try aimlessly to type with one hand for days and then weeks but the pain doesn’t end, it starts spreading. Next your feet start going numb, both of them. You can barely get out of bed in the morning because your feet start burning to the point that you have to peep out of the sheets to make sure there hasn’t been a house fire in the night. The podiatrist says it’s just plantar fasciitis (an inflammatory foot disease which comes and goes, causing minor pain and swelling) due to all the jogging in the months and years prior. It’ll go away, the doctors says, just give it some time. At this point, you have your shoulder in a splint and you’re limping at the same time. How did you go from jogging and jet skiing to this invalid of a person at 23 years old in just a few weeks?
Six months pass and you are juggled from physician to specialist to orthopedic to podiatrist when someone finally decides to take your blood and test your Rheumatoid factor. They finally say you’ve been diagnosed with Rheumatoid arthritis. They say that this explains all of the pain and curling of your joints. Arthritis? Isn’t that an old person’s disease? I think my grandmother has arthritis in her ankle… Why does my whole body hurt? What does Rheumatoid mean? How did this happen? What did I do wrong? I am too young for a chronic disease. There is no cure? Will I feel like this for the rest of my life? No one in my family has Rheumatoid arthritis. Those are just a few of the thousand thoughts that cross your mind the first time you hear your diagnoses. This is when you realize that your life is about to change… forever.
This blog is the first of a series on what it’s like to be diagnosed with Rheumatoid Arthritis.