I am so excited to be supporting AARDA through the Autoimmune Walk. This cause is extremely personal for me, and for many of my incredible co-workers. If you’d like to know more, I’ve written my personal story below. Thank you in advance for your support!
Most people don’t know that I’ve been battling autoimmune disease for 12 years, often dealing with flare-ups for months at a time. As a performer, I didn’t want anyone thinking I wasn’t capable of getting the job done. But I think I’ve proven I’m more than capable, and after meeting many people who are going through similar conditions, I’m ready to share my story.
Right after playing my dream role in the Nutcracker ballet at 13, doctors found a large mass in my knee. After they surgically removed the mass, my knee continued to flare for weeks at a time. I was diagnosed with juvenile rheumatoid arthritis. This was devastating for me at the time, as I had to take a step back from dancing/ballet company.
I started on many different medications to prevent flares-periods of time when my knee would stiffen/swell to the point of being unable to walk. These medications included steroids, which made me struggle with my weight, skin and BP. With the help of my doctors, I finally found an injection that kept the flare-ups at bay. And on I went, never letting it stop me from dancing, performing, or working out.
Turns out, all of this was a blessing in disguise- it allowed me to delve further into my other passions of music and theatre. I also discovered Pilates, a form of exercise and rehab that has become my dream job. :)
A year and a half ago, I came back to the States after opening a fitness business in England. I had taken myself off my medication, and thought I was cured (there was always that possibility, since my arthritis was diagnosed at a young age). Then a flare up came with a vengeance - but this time it was all over my body.
My jaw was in constant pain; I felt like it was melting off my face (not great for a singer). I had strange rashes on my arms and back, plus a “butterfly rash” periodically appearing on my face. I experienced serious joint pain on a daily basis- like a severe toothache all over my body. I finally know what “fatigue” actually means- it doesn’t mean being tired all the time. Fatigue is when one minute you feel great and healthy, and the next you feel like you’ve been hit by a bus and can’t lift your limbs. I’ve literally had to be carried out of places - embarrassing and painful.
I felt trapped in my own body. I’m a positive, energetic and outgoing person (not to mention fitness- obsessed). All of a sudden, I felt like I was 80 years old. My friends noticed the change, and thought I was depressed because all of a sudden I was so quiet and down.
I wasn’t depressed- just physically trapped. I couldn’t move my jaw to talk easily. If my friends wanted to go to the shooting range or the batting cages, it was painful for me to keep up. I couldn’t work out as intensely as I’d like anymore. I ended up saying no to so many things, because I didn’t want to slow people down. If I did say yes, it was so hard for me to hide what I was physically feeling.
My doctor didn’t know what to do. He looked at my pictures, reexamined my case, and put me on a muscle relaxer. It helped with the pain in my hands and feet, but it made me feel like I couldn’t even stand up. He put me on another medication. I broke out in a rash all over my body. I was incorrectly diagnosed with lyme disease, and then with an unknown autoimmune.
This is the issue with autoimmune diseases in general: the doctors don’t have all the answers. There are no cures (yet). All you can do is balance your symptoms with the side effects of the drugs. Many of the drugs cause symptoms of other autoimmune diseases. And so it feels like an endless cycle of frustration, meds, and managing flares.
The other issue is that autoimmunes are invisible, and most people don’t know much about them. Nobody knows the extra effort you put in extra to ignore the pain and stay positive everyday. Sometimes, daily activities are tough - carrying groceries, typing, you name it. It’s something you learn to live with. And I’ve never let it stop me from doing exactly what I’ve wanted to do.
Last March, I drove across the country to LA and found a new doctor. She reexamined my case and redid all my blood-work, and came up with a new diagnosis: a combination of lupus AND rheumatoid arthritis. Lupus is an autoimmune disease that affects the whole body- mostly hands, feet and skin. With the Lupus diagnosis, there have been new personal challenges.
It’s definitely been a learning experience, BUT some really amazing things have come out of this. I’ve been able to use my job as a Pilates instructor to not only manage my own pain, but to inspire others going through the same challenges. I’m on new medications- no more steroids!- so I’ve finally dropped the steroid weight. And best of all, my flares have really been few and far between.
I work with some incredible women who struggle with autoimmune diseases, and they inspire me to keep going everyday, and to never let it hold me back from anything. I can’t be stopped! Doctors are developing new research and treatments for autoimmune diseases everyday- I’m hopeful there will be a cure one day. Together, I think we can help make that happen!
More than 50 million American’s suffer from autoimmune diseases. That’s 1 out of every 6 people in the US! The Autoimmune Walk is of AARDA’s efforts to bring together families impacted by autoimmune disease to raise much-needed funding and awareness…Because together we can accomplish for more than any of us can on our own.
When we link together, we are stronger! When we link together, a cure is closer.