The Fear Never Really Goes Away
My journey with RA has been fairly easy once the disease came under control. I was diagnosed in 2007 after a horrendous seven months where I seriously fantasized about cutting my arms off just to get relief from the severe pain and dysfunction in my hands. The only relief I experienced was from steroid injections straight into my joints.
My first rheumatologist was great and we worked together very well. She was thorough and checked all my big and small joints. My current rheumatologist seems to skim over the body parts much more quickly. Kinda like the difference between reading every word, savoring each syllable, and speed reading.
To be fair, I chose my current doctor very quickly after the previous doctor retired because I was anxious to find someone who could continue my treatment plan and be willing to let me be somewhat in charge. When I came to Dr. G., I had already achieved near-remission through aggressive treatment with Rituxan and methotrexate.
An emerging fear of RA progression
But the last year has me thinking. Last December I had an unidentified infection that caused my lymph nodes on the left side of my neck to become huge, swollen, and painful. A few weeks later I developed a really bad cold that hung around for weeks, after which I had a mild MS relapse — the first in 50 months. This summer I got sick again with something that caused a high fever for about five days and lots of achy, muscle pain. Then, I developed a case of episcleritis which still hasn’t cleared up entirely six weeks later.
I saw Dr. G and she agrees that RA caused this case of episcleritis. It’s like RA needed a place to attack and my eye seemed to be the most attractive weak spot. At the time I was mostly annoyed; not so much fearful. Then my blood work showed elevated liver enzymes, probably from the unidentified infection and all of the Tylenol I took. My liver enzymes came back down to normal a month later so that’s fine.
This weekend, however, joints on my right index finger (the proximal interphalangeal and metacarpalphalangeal joints) became painful and visibly swollen. My right elbow has been sore for about two weeks as well. I took some NSAIDs and used an ice gel pack to relieve the pain. Today there’s only a bit of stiffness, so I’m okay.
Fear of worsening RA symptoms
But now I’m wondering what’s going to happen next, and when. I’ve had it so easy for so long. Dealing with only occasional, minor pain, stiffness, and swelling has been really nice since I started using Rituxan in 2009. During that time, I haven’t dealt with unexplained infections or sickness. I’ve had flares, but they always resolved in a week or so. This case of episcleritis doesn’t seem to want to go away and signals that my RA has taken an extra-articular turn.
What’s next? Now I can’t get the thought out of my head that my RA has become active once again. I’m afraid of RA attacking my organs or flaring with great relentless abandon. I really don’t want to experience the excruciating pain that I used to have.
Then I’m embarrassed of my fear because I am so very fortunate. I have had RA for at least 10 years and here I am complaining about the awakened fear of what RA ‘might’ do. Sometimes I feel alone in my medication-controlled, near-remission case of RA that has caused very little permanent deformity or bone erosion.
I hope I’m not alone in admitting a fear of the future. No matter what you might be experiencing in the present, knowing what ‘could’ happen is frightening. I just want to go back to ignoring RA.
What causes you to become afraid? I look forward to reading your thoughts and stories.
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