Self Management
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RA: to run and hide or to jump into the fray

sand hill cranes,  The Bosque, Albuquerque

 

I have passed the three-year mark with the official diagnosis of rheumatoid arthritis.  I am better in some ways. I can work the disease better. I am worse in some ways. The damn thing just won’t go away.

I remember when I realized that I only see my rheumatologist at best every six weeks and at worst every three months. I realized that I was on my own most of the time. I was on my own to manage my rheumatoid arthritis, two cancers, my home, my life. And if I didn’t take charge, no one would. At 72, I had better get busy.

I did think about it. One choice was to withdraw into myself. My rheumatologist said many do. I also had the choice of focusing on the here and now and managing my situation.

Historically, when I have been in a bad place I have felt sorry for myself a bit. I call it whining. A little is okay. It is just something a person sometimes needs to go through. Eventually, I get my bearings.  I see what I have to do next. I do it.  I keep going. This works for me.

I have a good doctor. My rheumatologist is the best. She has me on Orencia. My rheumatologist says if this doesn’t work we will move on to the next thing. We work together wading through the quagmire of RA. She is a good companion. I have plenty of issues.

  1. I spent many sleepless nights enduring all the crap that RA gives you. My doctor ordered a sedative. I am expected to take it nightly and I sleep. Problem solved.
  2. My copay for Orencia is hefty each month. I found help in paying a good part of my co-pay. I sought this help out. Help is there somewhere. It is sometimes hard to find but you have to look for it. Sometimes really hard.
  3. I found a palliative care nurse. Again I was looking for someone to help coordinate the specialists, drugs and symptoms that I have. She meets for an hour. She is not expensive. I can see her as often as I need. She is a port in the storm.
  4. I can manage better than I used to because I understand that there will be flare days, fatigue days, down days, etc. So I am not impatient with myself. I adjust my schedule. I can use the concept of pacing myself. I can go with the flow.
  5. I have a plan. When I have a flare, I have additional medication for pain and for inflammation that I take on schedule. I feel safe. I feel safe because I have a plan for those times and I have the tools I need to get through them. It is a time I need to take good care of myself. The flare will pass and times will always be better.
  6. I am committed to my community. I am on the board of Cancer Support Now. It gives me purpose and focus for a cause I believe in.
  7. I have routine. A nice part of that routine is making dinner for my son. We eat together and do dishes together. It is a welcome part of the day. Routine is healthy, and it should mean things to look forward to each day.

Managing rheumatoid arthritis is not easy. We could say that we didn’t ask for it. We didn’t. We still have it. It is part of our life and we need to manage it. What is the alternative?

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