In 2019 I started a journey with RA that no one wants to have to go through. Having been diagnosed with Celiacs disease in 2011 and then insulin resistance a few years later, I was familiar with autoimmune diseases. However nothing could have prepared me for the debilitating pain of rheumatoid arthritis.
I have always been active and played sports while in school. I played softball until I was 40 years old! I have ridden my motorcycle throughout numerous states and never feared traveling alone. I could not imagine my life changing from no fear to fear of being alone. I remember the first signs that I had that something was wrong was that I was experiencing pain in the bottom of my left foot. We were scheduled to go ride our motorcycles to Washington, DC from North Carolina in Rolling Thunder during Memorial Day weekend. I knew I would be on my feet a lot so I bought inserts for my riding boots. When we got there, man it was hot. Like so hot. It was over 100 degrees and we had to wait on asphalt in the Pentagon parking lot for hours. Coming home I did not feel well but hey, it was hot. After getting home it was like I could not recover from the heat. I thought I had heat exhaustion. Instead it was so much more.
I went to Urgent Care and I checked out ok for heat exhaustion. I went to my doctor and complained about not feeling well and showed him my hands and feet. Following blood work, it was inconclusive whether I had an inflammatory disease so I was scheduled for an appointment with a rheumatologist. However, the first appointment I could get was mid October. As June went by I kept feeling worse. Like really really bad. My hands were not working, it was excruciating to walk and the fatigue....man if you have ever missed sleep for several days and felt that kind of exhaustion? What I was experiencing was worse.
I was a medical malpractice paralegal for 26 years so medical research was literally my thing. That saved me. I started researching my symptoms and then pulled the lab reports that my internist had run. On 7/15/19 he ran the antinuclear antibodies panel which came back negative. In my research I found that there are several panels that can be run to rule out RA. I kept telling my husband that something was really wrong with me and he could tell by looking at me that I was right. What scared me the most was that I had slipped into a very deep depression. I had never experienced anything like that, even having experienced multiple traumas in my past. This was something different. I just felt it in my bones.
I found in my research an online lab that allowed you to pay for pretty much anything you wanted run. With my research in hand, I ordered a CCP antibodies panel. It was collected on 7/31/19 and I obtained my results on 8/2/19. What resulted was incredible. Result levels for this panel are this:
Negative <20
Weak positive 20-39
Moderate positive 40-59
Strong positive >59
My result? >250!!! with a "high" flag.
I started crying right then. I finally had proof that something was wrong. I emailed the lab results to my internist and told him that I needed to see the rheumatologist immediately and that medically I was crashing. I got a call from his nurse and I was seen that afternoon by the rheumatologist. I was finally going to get some answers.
Comments