Lorrie, the physical therapist, is my new best friend. I have a bad neck and back, not because I have lupus, but because I had to have a vertebrae in my neck fused in 1983. As happens, the area goes to hell over time, getting bone spurs, calcium deposits, etc. I have moved into the etc stage and now have bulging (herniated) disks above and below the fused vertebrae. It causes pain in my neck, headaches, tingling in my arms at times, and numbness in my toes.
Aside: Sadly, there is no numbness in the middle of my sole - where a dermatologist injected lidocaine yesterday and removed a suspicious discoloration. Wow, did that injection hurt! No wonder they torture people by caning their feet. The dermatologist is Lisa Hitchens. She is terrific and, even though she stabbed me in a very tender spot, I highly recommend her to anyone who needs attention to their skin.
Back to my neck. My wonderful rheumatologist, Sam Pegram, referred me for physical therapy and I went today for the first time. After filling out pages of forms and getting the PT once over from Lorrie, I got my treatment, a wonderful muscle and joint massage around the painful places. Lorrie commended me on relaxing so easily, but I can hardly imagine not relaxing under the kind and professional attentions she gave me. She also gave me sitting instructions and some advice on how to get my new progressive trifocal lens focused on the computer monitor without causing more harm to my neck. That's tricky, but I am working on it right now.
I received my first diagnosis of systemic lupus erethymatosus (SLE) in 1989. Since then, I have seen more doctors and other medical practitioners than I can count. More of them hurt me than helped me. The hurts included some actual physical assaults, such as a nerve and a muscle biopsy which, it turns out, are actually vivisection (cutting pieces out of you without anesthesia). EMGs fall into the hurt category (sending electric shocks directly onto your nerves) as do various spinal punctures. Contracting hepatitis C in the hospital goes on the hurt list, too. Thankfully I recovered completely from that and most people do not.
Other hurts were more subtle. Putting me on steroids at high doses for long periods which ultimately caused me to have cataracts, fractured vertebrae, altered mental processes (okay, I was nuts), and truly ugly fat (the "moon" face, distended belly, and "buffalo hump" neck are three of the better known parts of ugly steroid fat). Those of you who know me probably find it hard to believe that the steroids pushed me into a size 24.
The cataracts have their own story. The technician in the ophthalmologist's office measured incorrectly and I consequently got the wrong lens implanted into my left eye. The doc "fixed" it with radial keratotomy, but the RK did not stay stable and I have ongoing problems with my left eye. Trust me when I caution you to measure twice and cut once!
I did not intend to write a diatribe against docs, though; I want to applaud the good ones. It took a while, but I did assemble a fine team of doctors to look after me. They aren't perfect, but they try. Sam Pegram is my main doc. I started seeing him in 1994. I barely walked independently at the time. I had a scooter, a walker, and two canes that I relied on depending on the situation. I had just weaned myself off the steroids (legal ones, BTW) that had devastated my body while controlling the lupus and I was in pain all the time. Dr. P got me back on my feet - literally - and has kept me in reasonable good health for someone with a chronic illness ever since.
Another special doc is Mark Moeller. He is a psychiatrist and has helped me with the brain problems lupus causes (known as central nervous system or CNS complications) and with the emotional issues around having one's body go to hell in a hand basket. He's another long timer, over 15 years of great service!
I already mentioned Lisa Hitchens. I haven't know her very long, but after I saw how she treated my husband's skin cancer, professionally but with warmth and humor, I decided to let her check me out, too. I had one for sure little spot just inside the fold of my ear which she removed right away and the suspicious spot on the bottom of my foot which she removed yesterday. I recommend having an all-over skin cancer check-up if you've never had one before. It doesn't take long and it's painless.
Aside: Doesn't seem odd that one could have skin cancer on the bottom of one's foot? I think of skin cancer as being related to sun exposure and I promise you I have not been exposing the bottom of my feet to excessive sunlight - or to any sunlight for that matter. The ear spot I can understand and I am being much more attentive to sunscreen these days than ever before.
So there you have it, Lane's picks for best docs in town: Sam Pegram (rheumatologist), Mark Moeller (psychiatrist), and Lisa Hitchens (dermatologist). (And I think Lorrie is going to go on my list, too, after I have had a few more treatments from her.)