Barbara Sattler
Tucson AZ

Like most Americans, September 11, 2001 is a day I won’t ever forget.  Of course, I will remember the horror of the planes hitting the World Trade Center and the towers falling down.  It was also the day I was diagnosed with TM. Like many of you, it took several months to find out what was wrong with me.  It all seemed to start with a searing pain every time I bent in a certain position. The pain reminded me of several years before when I had shingles. It was intermittent pain and I ignored it hoping it would go away. A week or so later, I woke up with a fever and flu-like symptoms. For ten days, I shivered and sweated, had stomach pains and endured blood tests, CAT scans, an ultrasound and a visit to the emergency room. I was alternatively diagnosed with a virus, possible appendicitis and, ultimately, the only finding was constipation.  By the time the fever ended, while I felt okay, I had a partially paralyzed left leg.

I went to several more doctors.  I had more tests, more pain and fatigue and was hardly able to walk.  I was finally referred to a neurologist. What followed were months and months of being unable to sit down due to the pain in my waist and abdominal area.  I had bladder and bowel issues and pain, including the inability to wear clothes that were binding from my chest to my knees.  I had never before considered that wearing underwear could be a privilege. While I never was totally paralyzed, my right leg also became affected and for a while I could barely walk more than a few steps.

Finally, after about eight months that included a steroid injection and steroid pills, a tens unit, numerous pain medications and medications to deal with my bowel and bladder problems, I began to recover.  I went back to work after I was able to wear some underwear and bought myself a small wardrobe of comfortable non-binding clothes.  About three weeks after I returned to work, I woke up in the middle of the night to use the bathroom, tripped and broke my ankle in two places.  Because of my lack of balance from the TM and still being weak, crutches were out of the question.  So I spent the next eight weeks in a wheelchair.

Even though I still take pain medication daily in order to function, I consider myself one of the lucky ones.  I was able to go back to my career as a Judge and I find much satisfaction in what I do.  I have a very supportive husband and son plus a large network of friends.  Almost six years later, my legs are completely normal as is my bladder function.  I still take medication for bowel issues and constipation, several non-narcotic pain medications, as well as morphine daily.  I can wear underwear and somewhat more stylish clothing, although I still cannot tolerate any zippers or buttons at the waist or any even semi-tight shirts.

Recently I had a setback. Several months ago I reduced my morphine by one-fourth.  I believed that I was getting better (even if it was in tiny incremental steps).  I had reduced some meds, experiencing pain on medication less and less often, being able to workout and hike and just feeling better.  I was sure I was on the road to permanent recovery and would slowly be able to get off my medication.  But then the pain increased and I was back to the old dose. I guess I am facing for the first time the idea that I will never get any better than I am now.  I was also recently diagnosed with type 2 diabetes, although I am not overweight, exercise often and never smoked.  I was told that one risk factor for diabetes was the steroids I took.  This was something I didn’t know.

I am generally an optimistic person and doing okay. I can never adequately thank the TMA, Sandy Siegel and all the contributors to the TMA cause for providing the information, resources, and the knowledge that others were going through the same experience (and much worse).  I never heard of this disease before I got it and don’t personally know anyone else that has it. I would be glad to start a support group in Tucson, Arizona but so far I haven’t found any members.  I try to donate all I can and know others do the same.  Perhaps, I could share some things I’ve learned over the years about medical care and certain aids in recovery and coping that maybe will help someone else.

• Medical professionals don’t always tell you what you need to know.  After my steroid treatment, I had a steam bath and sauna and afterwards was in horrible pain. I found out heat was bad for nerve pain and that I should have avoided the sauna and steam and even hot showers.

• Many of us suffer dry mouth from our medications. There is a toothpaste and related products, such as mouthwash and gum with the brand name Biotene which totally eliminates dry mouth.  My dentist told me about it after she explained that dry mouth not only is uncomfortable but can also cause serious dental problems. It is available at most drug stores without a prescription.

• After being on numerous medicine schedules, I’ve found that if I set my alarm for an hour before I get up and take my pain pills and go back to sleep, I feel much better than if I take them when I wake up.

• Fighting against taking pain medication if you need it is counter-productive. I used to pride myself on holding out, but finally learned to take the medication as prescribed.  The longer you are in pain, the longer it takes the meds to kick in once you start taking them.

Don’t give up when one regime or pain clinic doesn’t work.  You should be able to find a doctor or clinic that will work with you and make a difference.  Don’t let a doctor minimize your pain. Be open to non-traditional remedies, such as hypnosis and acupuncture.  For several months, hypnosis supplemented my pain meds and really helped.