In retrospect, there is a reason for everything. The in retrospect part of that sentence is very important though as in the middle of most difficult situations, they are far too painful, stressful, or busy to realize the “why” behind them. A post by another blogger (Kelly- Rheumatoid Arthritis Warrior) got me thinking about this and I want to share my story of RA at this point, or at least, what it is until now and as best as I can tell it.
My diagnosis of Rheumatoid Arthritis was a long time coming. I started having symptoms, if you really look closely, back in high school. But I started really having problems right after I got married, in the summer of 2006. When you are a newlywed people expect it to be one of the happiest times of your life, but for me it was a more of a steady deceleration. I had been vibrant, busy, active, fun-loving, and the image of energy. Before I got married I was in college (taking 20+ credits at a time in order to graduate in three years), working two jobs, dancing in a church dance ministry that performed for thousands of people, and running. I should mention, one of my jobs was taking care of two kids part time and the other one was horse related- I was an assistant barn manager and I also gave riding lessons, trained horses, and rode my own horse. My life was the epitome of the active lifestyle. In all this, while taking my finals and writing my senior thesis for my English minor and my comprehensive exam for Economics I was also planning a wedding and arranging for a place to live after Matt and I got married. I thrived on being busy. I had some issues. I seemed to have some tendonitis in several locations as well as asthma. The tendonitis was never fixed with physical therapy, and only got worse, but I took lots of nsaids and kept going. That was how I was. Matt and I got married and I started looking for a job in my field but continued to work at the barn. I started to experience more fatigue and pain, but wrote it off to stress. After all, between having one apartment fall through, I had moved four times in 2 months, dealt with a wedding with a highly dysfunctional family, graduated, was trying to make ends meet, and was job hunting, I had plenty of stress.
I got a terrific entry level job in my field rather quickly and though it wasn’t my dream job it seemed a far sight better than cleaning stalls for my whole life (in hindsight, I enjoy cleaning stalls far more but my current job does have better health insurance) and I was quickly on the path to management. But a shadow was coming over me in the sense that my life had rather quickly turned into work, and sleep. I had no more energy for anything else. In the course of two months I went from vibrant to flat. I kept up appearances at work, but unfortunately as soon as I got home I had nothing left. I started having stabbing pain in my hands and elbows as well as nausea and cramping; after a few weeks of this with copious amounts of various forms of pain relievers having no effect, I called my general practitioner.
They drew blood, they poked they prodded, and gave me medications. They did test after test. First it was tendonitis, and the nausea was because I was celiac. So I went on a gluten free/wheat free diet. I learned to bake without wheat flour and found a place where I could buy xantham gum, since baking was one of the few hobbies I had left. I made my own blend of gluten free baking flour that didn’t taste like garbanzo beans, which was actually quite a feat. The one thing I did not do was get better. I continued to see my doctor. He would send me to one specialist after another, and do more tests; it seemed like all of them came back normal. I was starting to feel like it all had to be in my head; I must be crazy, lazy, or some combination of the two. I was gaining weight in all of this as well, going from a very fit size 6 and 145 pounds at 5’8” to, eventually a size 10 and 185 pounds. It broke my heart as I tried to make myself exercise, eat less, do anything to lose the weight, but I was exhausted and I hurt everywhere. The pain was now in my feet, knees, hips, hands, wrists, elbows, shoulders, neck, and ankles. I tried swimming, but even that was too much. I could barely bring myself to get on my old horse and walk around. Trotting felt like a herculean task. Even a little cross rail felt huge.
I received a referral to a rheumatologist. I was somewhat more hopeful that he might shed some light on my pain, since I figured I had to be running out of options. He reviewed my files and spoke with me for a few minutes. He didn’t have x-rays, or even do a thorough physical exam. He pronounced that I had Ehlers-Danlos Syndrome and that I should just live with my symptoms as there was nothing he could do. I felt insane. I read the literature he gave me, but the description of the syndrome I had sounded nothing like my symptoms. I was disheartened and wasn’t sure where to go. I called my general practitioner and he suggested we focus on the GI symptoms for a while and see what happened with the pain; until then he would try various pain medications to try to reduce the pain.
We found out the source of some of the GI problems almost six months later. While doing a test for something else entirely they found gall stones. They also realized that the test that showed I was celiac had been misread; I could eat wheat and gluten after all. I had my gall bladder out and hoped that things would get better. A few things did, but not very much. This time, my doctor referred me to yet another doctor, this time, a rheumatologist in Denver. I asked what good he thought it would do, his only response was that he was completely stumped. After nearly three years he was admitting defeat.
Without much hope, I called the rheumatologist in Denver and set an appointment. I gathered the records they wanted, got x-rays as they asked, and waited. I don’t think I will ever feel such a strange combination of emotions as I felt after that appointment. The doctor reviewed all of my records, all the way back as far as he could. He did a physical exam, took some additional x-rays, and took the time to really talk to me. After all this, he delivered his verdict. He basically said he was surprised the other rheumatologist had said what he did as my symptoms showed, “classic” rheumatoid arthritis. I wasn’t sure whether to be happy that I wasn’t crazy or heartbroken that I had RA. I was numb and hurting and glad all at the same time. He started me on a fairly conservative course of treatment, but one that would take out as much of the inflammation as quickly as possible.
The treatment helped. For the first time in three years I started to feel like me. Not 100% but 25%. With a few more appointments we were able to figure out which drugs worked and which didn’t; this is a continuing process that we still don’t have perfected. But, I lost 50 pounds this year, I started running again, I started riding seriously again, and I feel like I can be there for my friends and family when they need me. It almost felt like coming out of a tunnel where you held your breath the whole time, it was dark, and you got lost several times. Coming out into the light of day and taking a few deep breaths suddenly feels like heaven on earth.
In retrospect though, I see that I learned to face problems head on, at least when I really need to, I learned patience and perseverance, I learned to stand up for myself and trust my instincts, and I learned that I am stronger than I knew I was and weaker than I knew I was simultaneously. I learned that asking for help is not failure and many other things as well; I would prefer that I learned these things a different way. But, even now that I am back to not being able to run because I don’t quite have it in me, I look back on what I have learned and I try to look forward with hope. Because I know that eventually, in retrospect, I will see why I needed the challenges of today to prepare me for tomorrow’s challenges.
I may only be at 50% of where I want to be, but I am working towards getting closer to myself. I don’t believe everything will be ok in this life, but it doesn’t need to be. So, until next time, RAWR!!