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Monday, September 19, 2016

My Story :: Rheumatoid Arthritis

To this point, I have only used my blog to share some fun photos and all of the amazing, fun, beautiful aspects of our lives. I am an overall positive person so I tend to shy away from talking about the not-so-fun stuff but lately, I have felt so compelled to share my story, in hopes that it may help someone else.

In the summer of 2007, I was diagnosed with Rheumatoid Arthritis. I was only 17 at the time and going into my senior year of high school. Let me first say, this disease does not by any means define me. I am successful and accomplished despite this challenge. I had never heard of Rheumatoid Arthritis before; I knew about arthritis because my grandmother had it but never the auto-immune condition of Rheumatoid Arthritis. There was really no cure? Rheumatoid Arthritis is an auto-immune condition where the body's immune system attacks its own joints, including the tissues around the joints, causing inflammation and swelling.

Overall, it has been quite the journey but I can honestly say, one of the greatest blessings. I strongly believe that I have been given this trial to help me learn how to slow down and "smell the roses." It also taught me to take care of myself. When I was diagnosed at the beginning of my senior year, I was taking an AP class and 19 credit hours in college (in order to finish my Associate's degree during high school).

It all started with extreme swelling and throbbing pain in my shoulder the summer before I was diagnosed. There was so much inflammation, my entire right shoulder was bright red and swollen. I went to the doctor and was told I had a tear in my rotator cuff,  given a shoulder sling and some pain killers and told to let it heal for 6-8 weeks. Then the pain and inflammation were magically gone within 3 days or so. We were shocked but not sure what to think so we chalked it up to a miracle and went about our lives. A few months later, I started to have more regular flares. My left hand pinky and ring finger flared and I was enamored by how "huge" my hand became. My right big toe flared on Christmas morning and made it difficult to walk. I started to have flares in my knees. Meanwhile, we saw a couple of other doctors who would give us a brace for the new joint and send us away with some random attempt at an explanation. Finally, I had another shoulder flare that was so bad, I could hardly move and was sobbing for almost a full day in so much pain. We went to the emergency room at a local hospital and immediately, the doctor there knew what it was. He tested my blood for my Rheumatoid factor and immediately referred me to a Rheumatologist.

The first year was challenging. It took several months to convince a Rheumatologist to see me because I was still a minor. Also, at the time, doctors believed RA primarily onset later in life (early 40s and up) and was not common in someone so young unless it is Juvenile RA (more common around 8-10 years old). It has become more and more common over the last 10 years to see a 20 year old and even younger diagnosed with RA. After finally getting an appointment, I did not like my doctor and he immediately wanted to put me on an intense medicine called methotrexate, without discussing any other options. He also gave me some steroids to control the flares in the short-term. He explained methotrexate as a "mild form of chemotherapy in lower doses" and gave me a sheet explaining all of the risks and side effects. This is a very common initial treatment plan for someone with RA. I was feeling desperate at the time so decided to try it. I started the methotrexate in pill form and quickly noticed side effects: increased stomach pain and issues with digestion, loss of hair, minor headaches, weight gain, and more. It did seem to help the flares some but they were still happening 1-2 times a week. After sharing some of these symptoms with my doctor, he put me on an injection (instead of a pill) to ease some of the stomach/digestion issues. This did help but I still did not feel it making a major difference and felt there had to be another way.

A year or so after I was diagnosed, I stopped the methotrexate and started eating gluten-free and vegetarian (mostly vegan). I focused on a more holistic approach to the RA as opposed to a medical approach. With this diet change, I immediately saw results. I felt so good and I had so much energy! I then started running again and exercising regularly - this made all the difference. I started eating healthy and exercising regularly. Long story short, I did variations of this over about a 5 year period of time and considered myself in remission. During this 5 year period, I lived abroad for a year in India and Africa and the heat and/or humidity made all of the difference in my joints. This is when I felt my very best.

I am still not sure what happened but eventually I started to go downhill again. I was still eating vegetarian and exercising regularly. The main difference was I had graduated and was now working crazy hours and my stress levels were increasing. Yes, stress does increase internal inflammation. I also think it is closely connected to "mind over matter." The downhill slope started with some moderate flares in my shoulders - alternating back and forth between my left and right shoulders. It was late fall and I was back in Utah; it was starting to get cold and my joints were reacting. The flares slowly got worse throughout the winter until I was back to my previous 3-5 flares a week. I got to a point where I would wake up hours in advance in the mornings to take a hot shower, do some yoga, and get rid of the morning stiffness just so I could have a semi-productive day.

One of my mantras is "everything happens for a reason." Well, as things continued to get slowly worse, I also had an incredible once-in-a-lifetime opportunity to work as the North American Campaign Manager for Yeah Samake, a Malian Presidential Candidate. I jumped at the opportunity and also took advantage of this time to move closer to family so my mom and sister could be there to help me in the mornings and during more severe flares. My schedule was still very busy but much more flexible. I also relented and decided to go back to the doctor. I called to setup an appointment with a local Rheumy and they were booked out 6 months. I told them my situation and asked to be put on a waiting list if something opened up sooner. Well, by some miracle, a little less than a month later, I got a call at 7:30am to come in for a 9am appointment. I made it work. I loved my new doctor - she had more recently graduated but was familiar with new research and very professional. She put me back on some medicines and I immediately started to improve.

Around this same time, my now-husband came home from his LDS mission and we were quickly engaged. As we were planning our wedding, my primary concern was waking up pain-free on my wedding day so I could enjoy one of the happiest days of my life. I'm happy to say I was healthy, happy, and pain-free on our wedding day!

Over the first two years of our marriage, I went on another medicine, a biologic/TNF inhibitor called Enbrel. This is in addition to the weekly methotrexate I was taking. The enbrel made a difference in completely removing all symptoms and I was once again thriving. The cold, dry Utah winters continued to be more challenging but doable with my new regime. I was running again and even trained for and ran my first marathon during this time.

I have learned so much about myself and my body over the last almost 10 years and like I said, having RA has been a huge blessing in so many ways. One of the most prominent lessons that I learned again and again was mind over matter. Our thoughts have a greater impact on our lives and current reality than we can ever realize. It has also been a great reminder to slow down and just enjoy life.

Over the last year and a half, I have learned even more about RA and health as I journeyed through pregnancy and childbirth. I'll write more about this soon.

One word :: grateful.

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