As I’ve said, I was pretty sick when I moved back to Chicago in November 2004, almost exactly 20 years after I had moved away. I was not used to the cold Chicago winters. I was living in my dream condo, after leaving my dream house. I was up on the 40th floor of a condo on the lake. My view was north and northeast. I set up my home office with my desk facing the sliding glass door so I could see my lake. On very clear days I could see Milwaukee with my binoculars. And I could always see when things were happening in Evanston, where my parents still lived. I loved the condo and was so glad to be back home.
But there was a huge problem! My lupus was acting up and I had to try to get other medical issues caused by the lupus and various medications under control. I never felt well. I finally had my other knee replaced and seven weeks after surgery I was in Mesa, AZ, at spring training. That was a miraculous recovery!
There is no cure for lupus. You treat the symptoms. I’ve come to terms with that. But while treating the symptoms, the side-effects of many meds have caused other medical problems for me.
Over the years I’ve learned to listen to my body. I’ve learned to live with extreme pain. In fact, I can’t remember the last time I was pain ree. That’s kind of sad. But I do live with it. When the pain is really bad, I will resort to taking a pain killer, but try not to. Many people think I try not to use pain killers because I don’t want to get addicted to them, but that’s not really the case. I don’t have an addictive personality. The real reason I try not to take pain killers is that I need to have what I consider a baseline for pain. I have a very high pain threshold – most people would not be able to live with what I consider tolerable. If the pain level increases, I know that the weather is changing, it’s getting really cold or I’m going into a flare. Pain is one way your body tells you to slow down.
Sometimes listening to my body was taken very literally. There was the day I predicted rain to The Weather Channel people. I have loads of stories like that. But one that always makes me smile is the evening I was on a cruise with a group of girlfriends. Four of us were sharing a suite and one night we were sitting on our balcony having some wine and talking. Suddenly I announced we were heading into rain. How did I know? My knee was telling me. From then on, I was asked what my knee was saying. It was almost like it had a life of its own. It served me well when one friend and I were walking on St. Martin and I knew some rain was coming in. Each time I felt a wave of rain coming, she and I would duck into a bar for an island beer.
After all these years I know what normal lupus pain is for me, so when I started having unusual (for me) excruciating pain in my hands, right hip and other places, I knew something else was going on. I also had a terrible tingling in my right hand and arm that was not only annoying but increasingly painful. It was not as bad in my left hand and arm. I’d had a hip problem for a few years. Two years ago an x-ray was done on my right hip and it showed arthritis. No one seemed concerned. A few months later I finally had a test done on my hand and arm, which showed nothing – or rather, no injury. I knew there was no injury. I knew something was wrong.
I needed to make my doctors understand that I was going through something very new. My fatigue was impossible for me. I had no energy. I was in REAL pain. So, my rheumatologist sent me for an ultrasound on my right hand. Of course, it was a day when my pain level was down to tolerable and I figured nothing would show. I was wrong. There was a lot of inflammation in my hand, which was quite visible on the ultrasound. I was diagnosed with Inflammatory Arthtitis.
The next step was to find out whether or not I had Rheumatoid Athritis. When the tests came back even I knew the answer. Rheumatoid Arthritis. A normal rheumatoid factor is between 1 and 14. Mine was a whopping 192! But I got a triple whammy. Not only did I have lupus and new diagnoses of Inflammatory and Rheumatoid Arthtiris, but I was also diagnosed with a hybrid called Rupus – a cross between Rheumatoid Arthtirs and lupus. It attacks the connective tissues for the most part. Ah ha. The original diagnosis of Connective Tissue Disease from 1985 was correct, as was the diagnosis that the lupus was attacking my connective tissues. Another x-ray was taken of my right hip to compare with the one from two years before. This time it showed extreme progression of the RA. My rheumatologist said I had to get on something to at least slow the progression of the disease. She recommended three meds and told me to make a choice. She gave me information and I looked a lot up. I had already tried two different meds – one did nothing, the other made me much worse, so I had to really think about what was going on.
Big life changes were occurring and I needed to get a grip on what was happening so I could figure out and mourn more losses. It was time to dig out the course material from my lupus self-help classes and give myself a refresher course.