Living with chronic disease, My personal experience
Comment 1

Managing RA and commitments

I made a big accomplishment recently that makes me very happy.  I  completed my role as planning committee member for Cancer Support Now’s 4th Annual  Long-Term Effects of Cancer Survivorship Conference.  The event was successful. I could see it being valuable to attendees just like it was for me  last year.  I had loved it. Felt grateful for it. I had wanted to be involved in it.

Being involved had meant crossing town at 5 pm for planning meetings.  Crossing town just at the time when  the pain and the fatigue of RA  increased for me was a big one. I made the decision to go. It was the first big commitment I had made since my odyssey of two cancers and a diagnosis of progressive RA began. I made the meetings. The conference was coming together.

The Monday of the event I woke to severe pain in all my joints. It was not good. The problem with RA is that it is totally unpredictable. Severe fatigue or severe pain are random occurrences.   The pain kept getting worse with passing hours. Pain medicine hardly made it bearable. I thought how in the world will I make it through the week. Saturday’s Conference would be would be 9 hours.

Tuesday I had the good fortune of seeing Abby, palliative care at Presbyterian. We had the discussion about treatment for RA being really just symptom relief and perhaps slowing the progression a little. The big symptom is pain and we agreed it had to be managed. I needed to put my pain medicine on a schedule. I did. She also put me on Gabapentin for neuropathy, an RA bonus. Both were scheduled together.

Wednesday I made the 5 pm trip across town to help assemble registration packets. Friday I made another trip across town to help set up. I was doing better.

Saturday I was fine. Spent the day at the conference. It was a successful day. I felt grateful to be able to contribute.

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1 Comment

  1. Congratulations, Mary. I can identify with being wary not to take on commitments. So happy it worked out for you…and the attendees!

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