I shall be telling this with a sigh
Somewhere ages and ages hence: Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
With the help of a cousin, I waited for a specific rheumatologist to return to Atlanta. My first appointment with him was in July of 1985. I was his first patient. After asking me many questions and listening to me – really listening – he told me he suspected I had lupus, but it was going to be very difficult to diagnose. His initial diagnosis officially was connective tissue disease. By then my hands were in pretty bad shape and I was dropping things all the time. My downstairs neighbor knew how bad a day was for me by how many things she head me drop.
I was sent to an occupational therapist and a physical therapist. We determined that I had no feeling my my hands from my fingertips to my elbows. I was given exercises to do at home and was fitted for hand braces to wear at night. When I think of those now I cannot believe I actually wore them. They were made of a very hard plastic molded to my hands, from just beyond my fingertips to about my elbows. This was to keep my hands open and hopefully keep them from cramping during the night. I ended up with many bruises on my forehead because I’d forget I had the braces on and I’d try to scratch an itch and bang myself in the forehead.
My doctor was so convinced I actually had lupus that he started me on plaquenil, and anti-malarial and mega doses of Motrin. Motrin was not hte answer. We tried just about all the non-steriodal antiinflammatories on the market and either they didn’t work, I had an allergic reaction or some other strange reaction. After exhausting everything , over the course of a few years, he gave in and put me on prednisone. I had heard that prednisone would probably cause me to bounce off the walls. It didn’t. In fact, I wasn’t even sure it was working, but it was.
As time went on, I developed more symptoms and more pain. My rheumatologist told me that if I developed eight of 10 symptoms he could make a definite diagnosis of SLE. It didn’t take long for two more symptoms to rear their ugly heads. I now had an absolute diagnosis of lupus. New blood tests that were coming out also started confirming the diagnosis. Basically, my body had developed an allergy to itself and was attacking my connective tissues, meaning my tendons and ligaments. The pain was always there, at times so intense I wanted to cry.
I plugged on. My boss was quite understanding of my situation and allowed me extra time for lunch so I could go home and take a nap. I needed to get out from under the flourescent lights, which were making me sicker. When I was asked to join a brand new magazine part of the deal I made was I would have flex hours, I would have my own lighting and if I needed to take a nap, I could do so on a sofa in the managing editor’s office. This worked out pretty well but I was still in a great deal of pain.
I asked my doctor about a support group and he told me not to join one. he was afraid it would bring me down. I was coping with the lupus very well and was learning on my own what I needed to do to make myself comfortable and less sick. One thing I knew I didn’t want was to listen to people complain about how sick they were and how awful their lives were. That would have brought me down. I was no longer able to do many activities I had enjoyed before getting really sick, but I never saw a dead-end. I saw a fork in the road. I could go one way and feel sorry for myself or go the other way and see what else was out there. I always chose to see what else was out there. In fact, had it not been for the lupus, I would never have become a landscape photographer or an avid bird watcher. For a while I carried around a copy of Robert Frost’s “The Road Not Taken.” I truly believe that I have taken the road less traveled and it really has made all the difference.