Tuesday, September 6, 2011

An Aspie With Auto-Immune Disease

I have good sensory days and bad sensory days and in-between sensory days. Sometimes the slightest noise makes me want to scream and kick the walls of my office. Other times I can cope with whatever endless nonsense seeps in around the cracks in my door.

I have lived with Rheumatoid Arthritis since May of 2005. Through the diagnostic process, I had to face many of my fears. Talking to new people, as I was meeting new doctors and nurses and lab techs regularly, was not something I could avoid. I am single and at the time lived too far from my family to ask anyone to act as an advocate for me. My fear of needles was challenged, as I was having blood drawn a minimum of once a week and eventually had to learn to give myself injections. My fear of changes to my routine shook me more than any other. My routines keep me calm and suddenly I was helpless. There were days when I had to call in sick to work because I couldn’t get out of bed. I had to cut my long hair, because I could no longer lift my arms long enough to wash it properly and was unable to grip a hairbrush. I gained 50 pounds in 6 months because of the many medications I was taking and because I was suddenly forced into a sedentary lifestyle. There was a great deal of change in a very short time.

When the pain was at its worst, I was irritable and most people understood. Being unable to walk or hold a pencil without excruciating pain could upset anyone. When the medications began doing their job and the pain lessened, I still had trouble with sensory invasions, as I always had. It was just different now. Even on a relatively pain free day there were things that I had to cope with, like feeling sick from the drugs or being upset about my hair falling out.

For the past year, I have been in remission. Though my doctor never said the word “remission”, I was symptom free and off all medications, thanks to a careful regimen of vitamins. I had begun making an effort to be active again. In the middle of this wonderful year, I received my Asperger’s diagnosis. I began to feel “normal” for the first time in as long as I could remember.

A few weeks ago, I flare up hit me like a freight train. It all came back – the pain, the exhaustion, the depression, the helplessness – and I was PISSED. I hated having to agree to go back on the very medications which had made me miserable while saving me from further damage to my joints. But here’s something new…

Like every other part of my life, I have to look at this through my new “down the rabbit hole” perspective. I am in pain ALL the time. I take Prednisone, which makes me have bizarre food cravings, out of control hunger pangs and muscle spasms. I take Methotrexate, which makes me want to sleep for days and at times has made me violently ill. I take Mobic, which makes me sleepy and hyper at the same time. How can I deal with sensory overload when I can’t shut it out? How do I cope when the attacks on my senses are coming from within my own body?

This entire saga is playing out with frustrating familiarity, but I also find it fascinating. I can now look back on how I felt six years ago and understand why my mental response to the experience seemed so different from other people I spoke with who had also learned to live with RA.

The medication is beginning to help and I haven’t lost hope. I got my disease under control once and I’ll do it again. Fingers crossed (metaphorically, because…OUCH!) that it will happen sooner rather than later. Quite frankly, this sucks.

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