Going Mobile

It’s been happening a lot lately, people saying to me “you sure look a lot better than you did!” Some tell me I looked like I was beat up with a baseball bat. It’s nice, but a little disconcerting. It happened today at the grocery store. I ran into one of my neighbors, people who we’re friendly with but not close to, and she was telling me how they could tell something was wrong. She described watching me walk slower and slower, and becoming more and more stooped, and she said I got whiter and whiter. Every time she saw me. And she commented on my weight loss. She said she wanted to ask if everything was all right but felt uncomfortable doing so. She didn’t need to feel uncomfortable, I would have welcomed the concern, but I can certainly understand how she felt. I wouldn’t have walked up to someone and asked them if they were okay, either.

It’s kinda weird, realizing how much my decline affected people. I was just trying to survive it. I didn’t notice at the time the effect it had. It must have been hard for Tom to see me like that. Sometimes he would just watch me go through the process of getting up, and I could tell he wanted to just make it go away. He’s told me numerous times that it’s nice to have me back. It’s nice to be back.

It’s been a year since my first visit to the Denver Arthritis Clinic. My first visit they did a full work up, blood tests, X rays, detailed history, etc. About a week later the doc called and told me that I tested negative for Rheumatoid Arthritis and Lupus, but there was an indication of inflammation in the blood work. I don’t know exactly what he was seeing, but it meant that there was definitely something systemic going on. He did tell me that I tested positive for the genetic marker for Lupus but not the antigens or antibodies or whatever they are. I’m a musician, not a doctor. Anyway, since I’ve had a history of psoriasis, he diagnosed psoriatic arthritis. It’s very similar to rheumatoid arthritis in symptoms and treatment but the cause is different. It’s also an autoimmune disease where the immune system attacks your joints. Great. What was going to happen to my music career?

So he started me on a heavy duty anti-inflammatory. Come back in six weeks. It will take about three months to tell if this is the right med. Okay. I have a colleague with RA, and she told me it took them a couple years to get the meds dialed in. I always knew I would be okay, so I was ready for it to take some time to find the right med.

I thought I was getting better, but six weeks later Dr. Gensler didn’t think the improvement was enough. He thought it should be better, and we could keep trying this but he didn’t think it was the right med and let’s try something else. The next step was an immunosuppresant, and it’s hard on the liver. So I had to have a liver panel before starting it. Okay, standard procedure.

Turns out my liver wasn’t working right after the anti-inflammatory. Mild liver failure. Take nothing for two weeks and we’ll recheck. Still mild liver failure. Two more weeks with no meds and we’ll recheck. So I had to go about six weeks with no meds at all while my system stabilized.

Meanwhile, I couldn’t go up and down the stairs very well anymore. I had to take them one step at a time, like a two year old. I couldn’t lift anything very heavy, and it got to where I needed two hands to lift a glass of water. I was tired all the time. I thought the constant pain was wearing me out, and maybe it was, but now I know that fatigue is a symptom and I wasn’t aware that what I was experiencing was called fatigue.

I had pain all over. It also would move around. For a few days my jaw would hurt so much I could barely eat. Then that would go away and my feet would hurt too much to stand for more than five minutes. My arms and legs were always stiff and achy, like I had done a triathlon or something. I was getting this weird burning/itching sensation in my hands and feet. It would happen for an hour or a day, sometimes both feet, sometimes one hand. It was strange and unpredictable. The things I was feeling never stayed long enough to tell the doctor about, and they were so strange I couldn’t describe them. I told him about my feet feeling like they’re falling asleep while I’m walking, and he didn’t have an answer for it. So I just waited to see if the next med would help.