Most people remember Sept. 11, 2001 as the day the World Trade Center was attacked. For me it was a double whammy. I was diagnosed with TM after several weeks of mis-diagnosis. Today more than 15 years later I still suffer with chronic pain.
I was 53 and a Judge. I exercised daily, ate carefully and was rarely ill. A few months earlier, I turned down short-term disability insurance as something I didn’t need. Bad decision.
The four months after 9/11 were hell. I received intravenous steroids, oral steroids, and pain meds. As my partially paralyzed legs became more mobile they became more painful. My legs felt like they were encased in cement. Every so often it felt like lightning struck and I was unable to move. I felt like a boa constrictor had wound around my chest and made it hard to breathe. Very scary.
My worst most persistent pain was from below my bra to below my waist. My body couldn’t tolerate sensation no matter how slight. I felt like the fairy tale princess who could feel the pea below 44 mattresses. Nothing tight. For years I couldn’t wear a bra, jeans or belts. Good thing I worked in a robe. Sitting down was painful. I ate standing. I got a podium so I could stand in court.
I had a wonderful neurologist. I called him often crying. He tried a variety of meds. For me morphine in pill form worked the best even though sometimes I would lie on the floor and cry from the pain.
If that sounds like hell, it was, yet I consider myself lucky. One-third of people with TM remain paralyzed forever. I can walk and hike.
After ten years, I felt better and wanted to lower my dose of morphine. Another kind of hell started when I was referred to pain doctors. In their defense they see mostly addicts and have been lied to often by patients who want more drugs. Although I chose to lessen my dose, I was treated like a drug addict. I had to pee in a cup and sign a contract used for people with addiction issues. The contract assumed you were lying about drug use. I had a disease yet I was treated like a criminal. After seeing three pain docs I gave up on them. I did get off morphine with the help of my primary care doc.
Today 15 years later I rarely have pain worse than 3 on the pain scale. I still have problems getting the drug that helps me the most, buprenorphine. It was developed to help get addicts off opioids and is highly regulated.
I have many hopes that donations can make come true. I hope it gets easier to diagnose TM. I hope better pain medicines are developed. I hope a way is found to reverse paralysis. I hope everyone who gets TM is lucky enough to have a good support system that includes SRNA.
Although I wouldn’t wish this disease on anyone, there has been an upside. I’ve gotten wonderful support from my husband, son and friends. I didn’t fight this alone. I’ve met a wonderful community of people—in my support group, on the TM board and at TM symposiums and camp. I know what has meaning in my life. Helping others.
Barbara Sattler, SRNA Board Member, Support Group Leader
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