That being said, I don't often watch television. I don't have time. During my three years of being laid up most of the time with unmanaged and unruly arthritis I did watch tv all the time. It was all I could do. I watched the entire run of X-Files, which were amazing. How'd I miss that show the first time around? I also watched all of the Arrested Development show, another favorite now. Having to spend that much time on the DL has given me an aversion to sitting passively and watching tv now. I have a ticking time bomb in my body that may suddenly go off again, when my immune system finds a way around the Rituxan and builds up to attack levels against some unsuspecting joint or organ. It is now at a continually smoldering level, but the meds, both immunosupressive and pain, are managing to put out the big fires. I am grateful.
Yesterday I spent a couple hours at my doctor's office waiting for my appointment to get a pain medication script. My rheumatologist is good enough to give me the script, and I don't mind waiting. She has wifi. While I never know what to expect when I see her -- she talks about all sorts of things that have more to do with her practice and office management than my health. It is kind of funny. What could have been a fifteen minute appointment stretched into an hour. Doctors don't do that anymore, but she does. She examined my joints and limbs. Apparently I am losing muscle in my arms and legs, with my right hand being more eroded than my left. My neck is pinching on nerves causing pain and numbness in my face and arms now, too. My lower spine is pinching nerves into my legs. Many joints are swollen. Other than that, I'm ok!
She said that I've had this disease so long now that it's good I've accepted that this is as good as it probably will get without new medical advancements. She said people go through stages of grief over losing their old selves -- including denial and anger -- before accepting it. I told her I will never accept this as I am stubborn, and that she might not be able to see it, but I am really still very angry about it. She said if I had this level of disease in the 80's I'd most likely be disabled, not working, and possibly in a wheelchair. She said it is a very stubborn arthritis. She asked me lots of questions about how my life has changed, including finances, and said it is very common for people with RA to go bankrupt, lose relationships, lose work. It was not a pretty picture. I told her it is a match of stubborness between me and it. Daily. My Irish is showing, here. The major point that I came away with is that despite my ability to manage this bad boy on a daily and weekly basis, it is progressive and I have no idea what I'll be facing down the road. That is scary. Especially being alone. With ten children (well?)
One reason I think I couldn't sleep last night is all of this talk created some unconscious anxiety that made me really uncomfortable. I often live day to day, putting one foot in front of the other, rather than looking into the future. Yesterday's appointment reminded me why I do! It is hard to think about the rug coming out from under, from getting physically worse. Everyone faces this type of issue in their lives as they age, but I've been carrying it since I was 35. It takes it's toll, I guess. I entered my appointment yesterday feeling pretty good, and left feeling more fragile than I thought I was. Not fun.
All I can do is continue the walk, one step in front of the other, doing what I can to stay active and keep the balls in the air. One thing I need to focus on is using my hands more to keep the muscles in shape so I don't lose my art, too. The doctor said my hands are in good shape and while swollen, haven't started to deform, most likely because I am an artist and use them so much. The muscle loss is an issue, though, so I have to start making sure I use them every day. Out will come the threads and stitching again, manditory physical therapy daily. Maybe I should start using clay again, too. And make more bird toys from wood. Once again, my art and creativity shows me the way forward. I can happily live with that!
What will you make today?