I decided to share my story around living with rheumatoid arthritis (RA) as several people have contacted me recently to talk about the disease as they have been recently diagnosed. It is a topic I really do not talk about much. I tend to be a person of action and try to limit my excuses in life.
RA is a very misunderstood disease and people really do not understand the magnitude of the disease. When I say I have RA, the most common question I get is, where do you have it? Let me take some time to talk about the disease and my journey with it.
I was diagnosed with rheumatoid arthritis in November 2002. I woke one morning, and my thumbs were three times their normal size, and my feet and ankles were massively swollen. It felt like my whole body was in a cast. I went into emergency and was told that I had rheumatoid arthritis. Of course, I had no clue about RA and how my life was about to change. I found it puzzling as I had just transitioned to a master runner and was running very well. I thought that they were wrong. Even upon going to see a specialist, I questioned whether it was a mistake.
RA is an autoimmune disease. Your body’s immune system goes amiss and begins to attack your body’s own tissue. It attacks the lining of your joints. It attacks symmetrically, meaning that it affects the joints on both sides of the body. The synovial fluid and associated connective tissue cells proliferate, forming a pannus (cloth-like layer), which causes the joint capsule to become thickened and destroys the articular cartilage. In advanced stages, opposing joint surfaces can become fused. RA also impacts the eyes, heart, lungs, kidneys, skin, blood vessels, and respiratory system. People with RA usually have a low number of red blood cells.
The protocol for someone diagnosed with RA is brutal. I had to start with taking drugs such as Methotrexate (cancer drug), Hydroxychloroquine (malaria drug), Prednisone (steroid), and Thalidomide. These drugs are brutal. If none of these drugs work, then one can move on to be eligible for Disease Modifying Anti-Rheumatic Drugs (DMARDs) such as Etanercept (Enbrel). The protocol for me took 18 months. Let me explain eligible. DMARDs such as Etanercept (Enbrel) are not covered by health care and in most cases by private insurance. The cost of the drug is $1700 for four prefilled syringes injected once a week. Yes, a cost of $1700 per month!
In the first six months, post my diagnosis, I was not able to exercise at all due to the inflammation. I could not even wear shoes because my feet and ankles were so swollen. Further, I could not use a pen or pencil because of the inflammation in my hands and thumbs. Normal tasks were very hard for the first 18 months of living with RA. I went from being a healthy, very fit and strong woman to being weak. It literally happened overnight. There were days that the pain was so bad that all I could do was lay in bed. I felt I had no control over what was happening to me. I am a person who needs to control what is going on in my life. My own description of myself is that I am fearless, action oriented, determined, full of grit, and persistent. I am not afraid of failure and will take what I have learned from failure and move on.
I knew I had to push the system and gain back my ability to exercise and move. I was depressed and in pain all the time. For me, RA was like a death sentence. Like most things in my life, I took on the disease head on. I persisted, fought, and challenged the protocol. At that time, I had a young RA Doctor, who was progressive. With her help I was able to get approved for Etanercept (Enbrel) within 18 months, and by two weeks my inflammation began to subside, and I was able to start movement again. I thought the drug was a miracle drug!
At first, my expectation was that I could just resume running and biking at the level I had left off prior to the diagnosis. That was not the case. My body was different, and I had to figure out what my body was capable of with RA. Each day with RA is different and presents different challenge. RA goes in and out of remission and each day you are in remission is a gift.
What does living the RA feel/look like? It is a life of constant stiffness, soreness, muscle cramps, and fatigue. My muscles are tight, I have limited mobility in my shoulders and spine, and some days my knees and feet hurt so much I struggle to get up and down the stairs first thing in the morning and after hard training efforts. I tire more easily, and I have limited energy when it comes to endurance or hard intensity workouts. I do have good days where I can push hard. However, the recovery process is longer, and I require more sleep even compared to when I was a full-time athlete. There are days where I need 10 to 12 hours of sleep. It used to be that I would feel frustrated with having to sleep so much. It made me feel like I was lazy or inadequate. I have learned to accept that I need the sleep to help my body repair. Inflammation is debilitating, and the body needs rest.
People often ask me why I continue to push my body so much if it causes additional soreness. Training and fitness has been part of my life since I was a young child. I am goal oriented, need to have processes and plans, and most importantly, striving to be my best has been an outlet for me. This article is about my struggle with RA. However, I need to share that I am also a cancer survivor. I took up running when I was diagnosed with cancer. I started with only being able to run one block. Every day I added a block. Running was how I coped. It was the only time where I was alone with my own thoughts and it is what provided me the strength to fight for another day. Post my first bout with cancer, I went on to be a very good runner. My approach to fighting and living with RA is the same as it was with battling cancer. After two years with RA, I went on to train and compete in two Ironman events. I even got my running back to a decent level.
I try to live each day to its fullest. I have good and bad days. I make exercise my priority. It is my coping mechanism. I continue to attack things head on and try new activities to get me out of my comfort zone. I refuse to give up on enjoying what I love. Being fit and strong is part of my identity. I will remain active, battle all challenges that come my way, and continue to live a life having physical and mental grit.
My belief is that everyone has a story. Mine is not special. My hope is that my story helps others to find courage to battle obstacles in their own life.
