I have Rheumatoid Disease…aka Rheumatoid Arthritis. However, that’s a misnomer, because unlike regular Osteoarthritis, RA doesn’t JUST affect your joints, it’s an autoimmune disease that can affect your entire body, especially your heart. It is a crippling disease that slowly deforms your joints. Painfully forcing them into new positions. So, now that you know what it is…I’ll tell you about my journey. Yes, you will probably be bored to tears, but my blog…my rules ;)
In the late summer of 2013 I went to bed…perfectly normal…and I woke up barely able to walk and with hands that were so swollen I couldn’t make a fist or grip a glass. My first thought was “WHAT THE HELL?!” I was in a lot of pain, the pain in my hands felt like I’d laid them on the ground and let a truck drive over them. My feet, well…it was like walking with 2 painful balls on the soles of my feet. The pain was so intense, I literally tried hobbling on the sides of my feet when I had to move.
I didn’t know what the heck was going on, but I started rationalizing that I’d ate Chinese food and probably added too much soy sauce and the sodium was why my hands were so swollen (although this didn’t explain the horrid pain, I was grasping at straws). My feet, I assumed I had walked too much and had given myself stone bruises…on the bottoms of both feet…because, I’m just that talented. Anyhow, I assumed that I’d whine and hobble around for a few days and be fine.
It lasted THREE MONTHS. Seriously. I got an apt after about two weeks to see my primary doctor and he looked at my hands and said it looked like RA to him. He ordered lab work and set me up with a Rheumatologist. It took 3 months to get that appointment. So, my labs came back….and nothing was strongly positive, but everything was elevated just a bit. My RA Factor was negative. I figured that was that…I didn’t have RA and we’d look into some other cause. My doctor then burst my bubble by telling me that 30-40% of patients with RA are “sero-negative” which means the lab work is negative, but all the signs and symptoms are there.
While waiting to see the Rheumatologist, I started thinking about this…wondering how long I’d had it. About a month before this all happened, I’d had an issue with my left shoulder/arm. I woke up, in so much pain I thought I was having a heart attack! My blood pressure was up, and I don’t have high blood pressure…and I just felt that there has to be something terribly wrong, if it wasn’t a heart attack then I’d somehow dislocated my shoulder in my sleep, it was that bad. Off to the ER I went, and after a ridiculous amount of money spent, they told me my heart was fine, and they didn’t know why my shoulder/arm was bothering me, they discharged me with a prescription for blood pressure medicine….which I have never taken, because I don’t have high blood pressure. My blood pressure was high in response to the pain in my shoulder. Needless to say, I was frustrated. Then I thought back farther….
About 2 years prior to this, I had seen my doctor and he’d done a CRP test on me (C-Reactive Protein). This test is to see how much inflammation is in the body. Mine was high…very high…so high, he was afraid I had colon cancer and sent me for a colonoscopy. Which luckily came back normal. He never investigated further as to why my CRP was high. Sitting in the waiting room of the Rheumatologist, I started putting it all together. The summer both my ankles swelled up and I could barely walk all summer. The pneumonia out of no where that almost killed me. The way my knees would suddenly swell and get stiff. The unexplained pain in my shoulders that would sneak up on me and ruin days of my life at a time. Now, my swollen hands that felt like they’d been crushed. I saw the pattern.
My appointment with my Rheumatologist was interesting. He looked at my swollen hands, ordered more labs and said he’d start me on Methotrexate…which is low dose chemotherapy. It’s suppose to knock out my immune system to it can’t attack my joints. I refused. No, I’m not a glutton for punishment, but I wanted to start low….as low as possible, and see if I could control it with something less….scary. He said he’d start me on Plaquenil (this is the medicine of choice for malaria). He wrote the prescription, but told me as he handed it to me that I’d be back for the methotrexate, because my hands were “very bad”.
I took the Plaquenil. Over the course of 8 weeks my “flares” decreased…and then there was a window, where I felt normal. I rejoiced! I decided that the crazy doctors had no idea what they were talking about and that I didn’t have RA…after all the lab tests said everything was negative. I stopped the Plaquenil.
The thing about Plaquenil is it takes about 6 weeks to build up in your body to become effective, and it takes about half that to leave your body. I was on a happy cloud of pain free bliss…for about 3 weeks. Then, I started feeling so tired, I ran a low fever, and I started to hurt. My hands swelled, my ankles swelled, I was miserable. Lesson learned, I took my Plaquenil. He was right, I came back for the Methotrexate (he threw in prednisone for good measure too). I have Rheumatoid Disease.
However, I feel blessed. It could be worse. There are others that deal with things that are far worse. I can look at this as a punishment or a blessing and I see it as a blessing. Pain is a very motivating factor and there were things in my life that needed to change, without the pain of RA….I doubt, I’d have been motivated to take those steps, to make those changes.
I know RA is scary, it’s painful, and it’s incurable. I know that one day, I may be crippled by it…however, that day isn’t today. Each day that I can move, I can type, I can walk, is a blessing and one that I will do my best to appreciate and enjoy.