RA: how to cope with more bad news
For 80%, RA will be a progressive disease.
- That means for those who are being drug managed, the drugs will eventually not work anymore.
- That means for those lucky enough to have remissions, their disease will flare and incrementally get worse.
- That means for those with constantly active inflammation, like myself, the disease will continue to get worse.
This week my bad news is that my disease is getting worse and there are no more magic pills. And according to my oncologist, lymphoma is a big worry.
I felt blindsided. Discouraged. Tired of being in constant pain. Not interested in being a professional patient. Embarrassed about being chronically ill. Lost. My world had already crashed, now what?
What are my choices?
I could withdraw. I could become cynical. I could give up. I could be very depressed.
That sounds awful!
I could remember that RA is a disease that needs to be managed. I could be confident that I can adjust to my next step. I always have. The alternative to wallow is just not a choice for me. I have been anxious, distraught, and uncertain this week. I am kind to myself and allow this mourning period. But Then…
I have an underlying confidence that I will be able to cope and then thrive. I always have even though it sometimes takes a few days to re-center myself after the bad news.
I had to reacquaint myself with the concept that RA self-management is key to RA survival.
So I revisited a favorite book.
The First Year: Rheumatoid Arthritis, An essential guide for the newly diagnosed, by M.E.A. McNeil was the first book I read after my diagnosis. I leaned many things from this book that still serve me well.
- Accepted that I had RA. Life needed to be lived with RA on board.
- Determined to do what it takes to get better. This is bigger than it looks.
- Manage my own disease and make a plan.
- Assemble my RA team understanding that I am team captain: excellent rheumatologist, pharmacist, physical therapist, podiatrist, pain management specialist, palliative care nurse plus others as needed. I consider my oncologist as part of my team.
- Keep a journal and a pain log. It is amazing what you will forget. These tools are helpful on many levels.
- Learn to accept the unpredictable nature of RA. No regrets. No guilt.
- Manage pain. During the times when my pain level is not acceptable, I put myself on a regular Tramadol schedule. Doesn’t get rid of it, but helps. No guilt. No worries. It is about managing my disease. When I feel a little better I go back to an as needed schedule.
- Keep those joints flexible and muscles strong enough to help prevent joint damage. Tai Chi, gentle yoga, range of motion exercises, light weights routine. Keep the heart and lungs going just by walking. This is tough for me as my feet can be in extreme pain. I still move.
- Eat as wisely as I can. This can be tough with the nausea associated with the drugs. I have found that fruit makes a good substitute for pure sugar.
- Massage, mindfulness and supplements work for me.
- Keep connected to family and friends. Reach out.
I clearly remember that my mind can think only one thought at a time. I am doing my part in my RA management. I also take my pain medicine when I need it and rest as I need to.R I can now set RA aside and spend my time and mental energy on things I enjoy. I reread Preston and Child’s Pendergast series with a cup of coffee all the while feeling lucky that one of my favorite things to do is read. I do love spending leisurely time with friends whiling away the hours in good conversation. I love living with my son.
So bad news is done and absorbed. We all need the time to absorb life changing events. Because it is only then that we can move on.
Here’s an idea. It is adapted from Sandra Bullock’s movie 28 Days:
After the worst of RA fatigue has lifted, consider this. Get a plant. Keep it alive and be able to handle the maintenance. Next get a Betta fish like my Maxie. Keep it alive and be able to handle the maintenance. Next get a mature, loving cat, such as my Antoine. This is a good place to be. Enough maintenance. Big loving return. Hate cats? Consider a mature low energy dog. Maybe a bulldog. Not kidding.