Recently, I was thinking about the melancholy days that I’ve been having since I’ve been diagnosed with RA – with the stress and pain it can truly be overwhelming some days. But on these gloomy days, I have found that getting back into playing the piano and expressing myself through my music has helped me let go and continue living.
I usually do my weekly bits of research on Rheumatoid Arthritis, looking for tips on how to manage my pain and stay active, or what new medications are working for patients. But I was completely stopped in my tracks this week when I read this article from the Arthritis Foundation…
Despite a plethora of promising new rheumatoid arthritis treatments and an emphasis on getting diagnosed earlier, people with rheumatoid arthritis (RA) do not seem to be living any longer today than they were 40 years ago, according to a recent study from the Mayo Clinic. Within 10 years of being diagnosed with rheumatoid arthritis between 1995 and 2000, 29 percent of people in the Mayo Clinic study had died. Only 24 percent of those diagnosed with rheumatoid arthritis between 1955 and 1964 died within 10 years of diagnosis.
Why isn’t the situation getting better?
Researchers believe that for people with rheumatoid arthritis, heart disease is the reason for decreased life expectancy.
Fantastic. So not only do I have relentless pain to look forward to for life, but now I have to worry about heart disease creeping up on me? Come on people. How am I supposed to stay positive and not get discouraged when the research isn’t showing improvement, despite all of the new treatment options? [sigh]
Lately I have been trying to do the opposite of this train-wreck reaction (as expressed above) by trying to embrace my illness and accept what comes with it. Learn how to cope while stilling living the life I want for myself, I suppose. I read a great tidbit from a psychologist named Epstein in his book “Going On Being” (thanks to my best friend who sent me the book for my birthday):
We want what we can’t have and don’t want what we do have; we want more of what we like and less of what we don’t like. We are always a little bit hungry, or a little bit defensive, anticipating the slipping away of that which we have worked so hard to achieve. We worry about the past and anticipate the future. This attempt to control what can’t be changed interferes with our going on being.
The hardest thing about having RA is that I have no control over it. I have no idea when I will wake up with a migraine or that my knees will give out when trying to walk up the stairs or when my wrist will bruise like I broke it (that reaction comes with the new medications, unfortunately). And it truly is a guessing game when it comes to treatments that actually work – that allow me to continue with my life. Of course I’m going to worry about the past – what did I do wrong to deserve this? or why is this happening to me? – and anticipate what’s next – will this treatment work this time? or what am I going to do when I can’t afford this anymore? All these attempts at control, as Epstein says, just makes things more frustrating and emotionally draining and don’t allow me to go on being.
This is where the melancholy mood swings come into the picture with a chronic illness. For instance, I might have a pretty good day with the pain, and not have had to call a medical insurance company in a few days, and maybe splurged on some cute boots, when suddenly something happens that breaks the camel’s back – this happened to me yesterday when I was having a good day and making dinner before getting ready to go out on a Saturday night and the power went out. I’m not talking my little apartment’s fuse box just needed a flip switched…the entire block and around the corner was blacked out for almost 12 hours! It’s these little things that seem overwhelming when I have so much already on my plate to deal with on a daily basis – and I really wish I didn’t react like it was the end of the world, but it sure feels like it.
With the help of some new books on psychology and embracing change, I am working on accepting the idea that I will be living with RA for the rest of my life. I still want to do everything possible to continue living the life I always hoped for myself. I can’t change my genetics and go back to Lauren without RA, so I just need to let go and live…(easy to say, but hardest thing to do).
Thanks to a close friend of mine who has recently asked me to play some of his favorite songs on the piano over Skype for him (you know who you are), I’ve been picking up music again. I admit, it has been quite awhile since I played the piano for fun. After college – and being forced to practice 5+ hours a day of classical music just for my degree – it was very hard to continue the regiment. Luckily, friends asked me to play for their weddings following graduation, I picked up music again at my local church in Arizona, and I even joined a band for a year (called Fetch…that was fun).
But once I moved to San Francisco, my little Casio Keyboard stayed right where it was for the first year – leaned up against the wall in my tiny studio apartment. Honestly, there was no room for me to set it up. Plus, with the RA diagnosis, my wrists were definitely not in shape to play all those keys and my energy level decreased rapidly for extra-curricular activities. Let alone, I really did not have the time trying to balance two jobs, school and a boyfriend last year, while trying to find a treatment for the RA that worked.
But finally, I have my keyboard set up in my living room (thanks to my Dad) – right next to the TV, so when I want to just sit on my couch and veg-out, I have to look past the keys and pile of sheet music. And sometimes it works and I turn off the TV and sit in front of the keyboard and site read my favorite popular songs. I feel like I’ve finally found some inspiration for playing again – especially now that I can just play more popular songs (like 100 years by Five for Fighting for a certain someone or You Raise Me Up by Josh Groban for my Mom) and I don’t have the pressures of competition and a teacher’s criticism over my head.
And let me tell you, music really is healing. The more I’ve started playing again, the more I’ve realized how much I can let go through playing – I can release the stress of my day and just focus on the melody of the song – or play really loud if I am frustrated and sing when I just need to escape. It’s meditative, relaxing and fun now and music is such a big part of my life, so I’m glad I found it again.