Five things I’ve learned along the road with RA

 This blog is part of the first annual RA Blog week-
Thanks Rick Phillips!! 
When you live with rheumatoid arthritis you have many, many opportunities to sink or swim. Days when you wake up and it hurts too much to lift your down comforter off your body, sitting at work and having to steel yourself when you go to stand so as not to incur too many curious glances, or when you are too tired to see straight and the night has just begun. Times like these are opportunities to decide not to give up, but instead to learn a thing or two.
Here are five things that the challenges of RA have taught me:
  • I am stronger than I know. Living with intense pain for long periods of time will test the even strongest souls and sometimes I do have to wonder just how long my 95-pound body can handle it. But then I remind myself about the many stories of extreme survival I have read over the years. They inspire me and remind me that the human spirit can will a body onwards when a person has a purpose to live for. I keep this knowledge in my back pocket on days that the pain takes hold, and I tell myself that, despite living with great pain, I have things to do with this gift we call life.
  • This too shall pass. One thing I know for sure is that rheumatoid arthritis is mercurial. This disease has shown me its many moods time and time again, and when it is deciding to be savage, I’ve learned to ride it out because eventually it will give me a break again. I do this by hunkering down with a book, a television show, or if I have the energy, an easy craft that I can do to take my mind off the pain. I give myself as much rest as I can and try not to ruminate about the pain, because that does nothing to help. Instead, I talk to the handful of friends who won’t get too upset at my plight about things that make both of us feel good. I like to plan trips or bike rides I’ll do some day, to remind myself, as much as possible, that this too shall pass.
  • No Man (or Woman) is an island. When I was a kid I told myself that nobody could take the pain away so there was no reason to talk about it. When my doctors asked how I was doing I always said, “fine,” even when I was feeling anything but. I had a lot of “sprained ankles” at school- a way to explain away my limp. I was mute on the subject of my pain because, honestly, I didn’t have the language to express the depth of my experience. This was a lonely, isolating, and extremely unhealthy way to live. So unhealthy in fact, that it led to another disease- anorexia. In my early twenties, I began to shift. I reached out to a few good friends and, to my surprise, they were just fine with the fact of my RA. These days, I don’t recognize the lonely child I used to be. I have cultivated a life that includes supportive friends and family, health-care providers that understand how to help me, and a variety of tools in my pain toolbox. Just like it takes a village to raise a child, it also takes a group to live well with rheumatoid arthritis.
  • Pain is more than just a feeling. It is a relationship. And definitely a rocky one at that. Once I realized that chronic pain and I have a relationship I was able to open my eyes to the many things pain has taught me- compassion, resilience, gratitude, humbleness, and a really good sense of humor. With this knowledge, I not only handle life with rheumatoid arthritis better, I handle life in general better. For this I can thank my pain.
  • Denial is not just a river. I am a firm believer in a good dose of healthy denial. My denial has helped me to go places a person with end stage rheumatoid arthritis in their ankle shouldn’t go- like to the top of 14,000 foot mountain. It helps me to forget my limitations and instead focus on living my life. It keeps away the blues, and helps me to switch gears in my mind during nights when worry takes over. Over the years denial has been much more helpful than the stark facts of my disease.
I’ve found that the more you pay attention, the steeper the learning curve; I plan on being a good student for the rest of my life!

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