Out of the Blue
Hindsight is 20/20. As I sat down to write my story here, I realized that though I have a diagnosis date for my RD, I don’t really know when it began. I was in pain a lot during my childhood, but I grew up on a farm and worked like an adult from the time I was seven years old. Pain was just an accepted part of my existence back then. We all worked hard, and my mother wasn’t interested in hearing complaints about my painful feet, hands, or knees. When I was 25, after I had my first child, I noticed swelling and stiffness in my hands and fingers on waking. I just pushed it aside as part of the whole “new mother” experience. But, in 2013, I woke one Sunday morning and my entire body was in agony. I had been working in my yard the day before – I mowed the lawn and planted some flowers, but nothing I had done could be responsible for the pain I was in. It was frightening. Even 800 mg of Ibuprofen didn’t touch it. I lay in my bed, wrapped in blankets, and tried to think of what could cause such pain, and then it came to me – my oldest sister had been diagnosed with RD several years before, and she spoke of pain coming on, just out of the blue.
My rheumatoid factor was off the charts
I felt a little better the next morning, but I called my doctor and made an appointment anyway. It took some work to convince her to test my rheumatoid factor. She kept assuring me that it would likely come out fine and that I probably just overworked myself. A week later, when the blood-test came back, she called me herself to tell me that my RF was “off the charts” high. She put me on a Medrol dose pack, prescribed meloxicam, and referred me to a rheumatologist. That was August. It was late January before I was able to be seen.
It sounds overly dramatic to say it, but in those four months, my life fell apart. My fiance began to pull out of our relationship as the reality of what I might be facing set in. I missed a lot of work due to pain, and when I was at work, I often fell asleep right at my desk because the fatigue was uncontrollable. I asked to be able to work from home a majority of the time – the position I had was perfectly suited to tele-commuting – but was refused. People at work started to treat me differently. Not my immediate co-workers, but those who were in charge of making decisions about staff. Stress over my failing relationship and fear about my health and job kept me on edge, which made the flare I was in much worse.
I was faced with losing everything
The rheumatologist dismissed my concerns, told me he doubted anything was wrong but put me on Plaquenil and a daily 5 mg of steroids. After a month with no improvement, he added Methotrexate. The medications caused me a lot of stomach pain, and I started vomiting in my sleep at night. In early April, my fiance broke up with me. I was being told that my workplace was looking into bringing someone else in on a contract basis to do my job – not because I wasn’t doing it, but because it would be cheaper to pay someone on a piecemeal basis. I was faced with losing everything – my mobility, my plans for my future, my relationship, my job…
And I wish I could say that everything worked out wonderfully. At the least, I can say it worked out – sadly, the relationship was over for good. I stayed in the job for another year and a half before the position was cut, but I was able to move into another, better, job almost immediately. And I fired the rheumatologist who wouldn’t listen to me and found a great doctor only 40 minutes away who is very attentive and feels like a partner rather than a doctor.
That all happened in 2014. Since then, I’ve been through MTX, Enbrel, Humira, and Simponi. Right now I’m on Orencia, and it is helping. After four and a half years, I finally got the courage to try another relationship. It is ok – the man I’m seeing now is kind and understanding, but I am very reluctant to risk my heart again. I keep thinking that who knows what could happen? I could wake up one morning, unable to walk, and he could decide that a future with a woman in a wheel-chair doesn’t sound very attractive.
Life keeps coming
If there’s anything I’ve learned during this process, it’s the following: Life keeps coming. Whether you’re on your feet, in a chair, or on your back, it just keeps rushing at you. People don’t stop needing and wanting things from me just because I am in pain and can’t really manage to respond very well. And even when I can’t perform to my usual standard, I still manage to get things done. The house isn’t as clean. Not all my work is turned in days before deadline, the way it used to be. I can’t go deep-woods hiking or push-mow my lawn these days.
What I can do is be present in the moment I’m in, live as fully as my condition will allow, and wring every bit of joy out of every day, for as long as I possibly can. RD came into my life out of the blue, but I’m not going to let it drag me into the black. Not without a fight.
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