Self Management
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Four years with RA

RA Just sayinIt was four years this month that I was officially diagnosed with Rheumatoid Arthritis. Learning to accept my situation and learning to manage my disease was not easy. Pain is constant. It just varies in intensity. Fatigue is overwhelming and was constant the first few years. The RA process of medication trial and error was discouraging. Medication side effects were hard to tolerate. Underneath it all, the knowledge of living with a progressive disease was disconcerting.

Add to the mix, I was diagnosed with stage three thyroid cancer and breast cancer the same year that I was diagnosed with the RA. Both included surgery and radiation treatment. Yet here I am four years later. I am still struggling but I am surviving and maybe thriving.

I wake in pain. I go to bed in pain. Pain is discouraging and even depressing. Many of my joints are affected by RA. Fingers, toes, feet and hands, elbows, wrists, shoulders and jaw. So, I am blanketed in pain. I take meloxicam and methylprednisolone for inflammation. I take gabapentin and tramadol on a sliding scale depending on pain severity. I have hydrocodone for occasional severe pain. It all helps. Presently, I am in a situation where I take tramadol and gabapentin before I get up in the morning, early afternoon and early evening. I do have a heated mattress pad and a sleep aid that helps me through the night.

I have special shoes with a wide foot and high toe box. I also have custom inserts. It is amazing how helpful these shoes are. They make the difference between walking and not being able to walk. Not pretty but I love them.

I have learned to pace myself. Gone are the days of endless energy. At home I rotate physical activity with resting activity. Reading or working on the computer alternating with activities such as housework and light gardening. Most of the time I am able to accomplish a lot. Sometimes I just need more time to spend reading or watching favorite movies or series.

When I go out, I plan my stops and there are not many. Going out is exhausting. I have soft ankle braces that help. I have a handicap parking permit. I used to park as far from the entrance to a store as possible. Now parking close to an entrance helps me get through.

I have been on Rituxan, Orencia, and Remicade. The Rituxan didn’t work. The Orencia worked at 50% for about 10 months. The Remicade made me sick. I am reluctant to try another biologic. Presently, I am on Methotrexate injections and Plaquenil. I take methylprednisolone (Medrol) dose packs for flares but do not take a pack more than once a month. As time goes by I may need to try another biologic.

Initially, when I started methotrexate, I was nauseated and had diarrhea. The diarrhea has passed but I still am sometimes nauseated. Methotrexate helps me. My liver and kidney function tests are always good. I have eye exams yearly since I am on Plaquenil. My exams are also good.

I am managing for now. I am active in a cancer organization, Cancer Support Now. I am on their board and several committees. I manage their data base. Most duties can be done from home. I enjoy the company of this tireless group.

I write. I am writing a book about the three-year nursing program. They were the best hospital nurses and have faded into history. I am midway through writing a book on RA.

I am establishing my yard as a natural habitat. I enjoy watching the birds and quail as I sit here writing this.  Fun to see the birds taking baths. Cats wander through wishfully thinking birds. Nite time draws nocturnal critters for water and seed.

I am fortunate that I am retired.  I had to close a satisfying business because of my unstable health condition. I can now adjust my day to my physical needs. However, I appreciate the difficulties of young women raising young children while coping with the challenges of RA. I also appreciate those who need to work to keep the insurance benefits that pay for RA treatment. It makes managing RA difficult and discouraging.

Regardless of our situation those of us with RA must take ownership of our bodies and our disease. We alone are responsible for managing. It is a tough thought. Doctors, physical therapists, pharmacists, nurses, family and friends are on our team. Yet we are the ones who need to figure out what works for us. It is not easy, but to take ownership of our RA is empowering. Pacing, pain management, some RA drugs and satisfying activities help me cope. I am fortunate to have a rheumatologist I respect and trust. Feeling grateful for the good things helps me manage through the bad times.

I would love to hear your story. What works. What doesn’t. My email: marymann@comcast.net.

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