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RA Journal 10-13-16

It is 5 am. Coffee perking. Cozy flames from the fireplace. Antoine, my 10 year old Maine Coon cat, fed. No sleep at all, not even a little dosing.  So I  finally decided to get up and start my day. I have RA. It is a bummer. Presently, I am on prednisone for a flare. I like the medrol packs which plus my regular prednisone help me feel better. But it is day four and the sleeplessness side effect has kicked in. It might last another day. I will eventually sleep.

Most with the diagnosis of RA have a progressive form of the disease. I can say I have been in a constant flare for almost 4 years. That means my body has been continually inflamed for almost 4 years. Definitely not good for my body.  Sometimes are worse than other times. None of it is good.

Mine started in my feet.  My toes, my feet, my ankles are reaching the point where I am worried about mobility. My knuckles can be bad as several of my fingers can. My right shoulder is worse than my left but the left is catching up. Both elbows are involved as are my hips. Not my knees so far. I also have it in my jaw, my neck and several other little joints.

I have learned to manage my disease as most of us do in order to survive. I see a palliative care nurse and she has helped my learn to manage my pain with medication. I do have to laugh at those who say you can manage pain with meditation. RA pain is severe and pervasive and give me the medication first and then I will gladly meditate.

I have taken up knitting. I knitted years ago and wasn’t sure I would remember how to do it. I bought a book on knitting for children. It is great. I knit during my rest periods. It is meditative by the way. My knuckles look straight out of Rocky but they don’t hurt as much as the rest of me which surprises my Rummy. There are times I cannot knit but I am good most of the time.  I have knitted everyone a hat for xmas. I am working on little purse like pouches with a button and flap, journal covers, kittens and owls and little baskets. I am working on a wool hat for my great nephew in Syracuse, NY, Scrunchies. Another journal cover for my sister in law in Watertown, NY.  I love the different yarns, textures and colors. I am amazed and impressed with all the knitting experts online. My skill set is building.

Many who read this are not able to knit. All those little joints in their hands are swollen, painful or damaged. Before treatment my left hand was swollen to double its size. Hands can be a causality in RA.  I had the good fortune to go to physical therapy for my hands. It was like being in heaven. They had the hot wax treatment and would cover my hands and then wrap them in towels. It felt delicious. After the treatment I was taught hand exercises. They are on my blog. The exercises are easy and can be done while driving. We need to keep everything moving as long as we can.

Energy is a big problem for me. I once was a high energy, busy woman. I have turned into a slow mover who has to plan her trips to the mailbox. For my first year with RA, I felt immobilized. I had to do things like everyone else but it was a great effort. Then I read an article on WebMD about pacing. Slowly, I began to incorporate it into my day. It is a process that you can adapt to your needs.

When day after day my joints are stiff and I am in pain, I can still get some things done. I rotate physical activity with reading, writing or knitting. Some days I knit and read a lot and some days I work in my garden more. Shopping totally saps my energy. I have also been getting random severe pain in my feet or ankles when I’m out. I have learned to use the cancer patient’s(yes, I’ve has two cancers) use of the shopping cart as  a support.

I realize that I have a lot of company. They say life is what we make it. It is and it isn’t. Life gives us challenges. Some are tough ones. Most of us muddle through doing the best we can.

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