The Day My Life Changed

The Day My Life Changed

In July 2014 I was feeling under the weather with generalized aches and fatigue. I had a low grade fever for a couple weeks which I thought was odd. One night before work I kept having incredibly vivid dreams and I was waking myself up yelling and talking. I knew I was hallucinating from a high fever. I am an emergency department nurse and my shift was going to start in a few hours so I needed to get it together to figure out what I was going to do for work. My temperature actually registered over 105° and I was hardly coherent enough to use my phone to call in sick. My fever responded quickly to ibuprofen and Tylenol which I continued to use over the weekend. Finally the fever broke after a few days however I was left with joint pain in all of my joints that was so severe I could only lie in bed until it began to ease. My left hand and elbow remained swollen, red, stiff and painful. I began to feel better; the swelling was still present however it would be gone by the end of the day and return when I woke. I thought/hoped it was just a virus but my big concern was rheumatoid arthritis (RA). 

I went to my primary care provider (PCP) and had labs done. My sed rate and CRP (labs that measure inflammation) were extremely high however my rheumatoid factor (one lab used to diagnose RA) was negative. So we knew that I have some kind of inflammatory process going on but no RA, at least I thought. I did not know that much about RA. I knew my grandpa had severe RA and had deformed hands and elbows from it but that was really it. I began reading about RA and learned that up to 30% of people never test positive (rheumatoid factor) for RA and up to 80% will test negative in their first year. Still I hoped I was just getting over a virus. I continued on with my life, the joint pain continued, it was isolated more to my fingers, hands, wrists and elbows. My fatigue was still pretty tough to deal with. My hands were so bad that I had trouble doing regular daily things like cooking, typing, and writing. Work was difficult; as a nurse I perform many tasks with my hands and at times I experienced debilitating pain. 

Finally the swelling was improving and I was getting better. Then one morning I woke to blisters all over my left forearm and an extreme amount of swelling. I also had fevers again. I went back to my PCP's office. I was extremely concerned at this point due to the duration of the illness. I felt like we were moving out of the window of time that it could be a virus. At times I was not impressed with this particular doctor, she could be argumentative and appeared to not listen well. However nurses are notorious for being difficult patients so I try to remain open. The doctor was dismissive and flat out said "no, you do not have RA" she checked me for every virus possible, RF, CRP and sed rate. My RF was negative, CRP and sed rate were elevated and I had been exposed to every virus tested in the past and was not experiencing an active virus. I told her I wanted to see a rheumatologist and she laughed. I was livid. Although I did find out I did not need a referral so I found an excellent rheumatologist thanks to a recommendation one of my favorite ER doctors. 

         I saw my first rheumatologist at the end of September 2014 and she was impressive. She listened, she was compassionate and she could read me. She told me I was stoic which is not a good thing and that I would have to learn to communicate with her if I wanted to get better. She also acknowledged that this probably comes from strength and getting things done however it is not an asset in this situation.  She started me on Plaquenil and stated she felt that it was RA. She explained that my labs could remain negative for the rest of my life and my disease could progress despite the labs. I saw her two months later she still felt it was RA but we waited to see how the Plaquenil worked. By the end of December she was ready to start a biologic. I was getting worse, I had synovial patches on my hands, my fatigue was debilitating and the pain was seriously impacting my life. She felt we needed to get aggressive because it seemed to be moving fast and at 42 years old, single mom and the provider of my family we didn’t have time to wait. The first biologic she wanted me on was Cimzia and it was denied by insurance, they wanted me to try Simponi. I failed Simponi after 4 months. During that 4 months I also tried methotrexate oral and injection and ended up having a gastrointestinal bleed with it. I then started Leflunomide and once I failed the Simponi they wanted to start Remicade. My hands have visibly deteriorated and I felt like it was an excellent idea however my insurance disagreed. I finally started Cimzia and continued the Leflunomide and Plaquenil. 

I am doing better than I have since that day my life changed in July 2014. I don’t think I will ever be the same. This disease has touched every part of my life physically and emotionally. I have grieved, I have wanted to die, I have been so angry I could just explode. Mostly I have cried, cried  because I have lost so damn much. My kids have lost so much. I will never stop though. You never know what you will get when you wake up with RA. Will I hurt or just be stiff, will I be so fatigued I have to go back to bed in an hour or will I actually function today? Yes it is a chronic illness but it treats us like the surprise of an acute illness. You never know what it will bring tomorrow. I do know courage is required every day!