Above my left knee in the middle of my hamstring is a dent. I was looking at our beach pictrures last week to print a few for my husband’s birthday when I saw the dent. I had coincidently felt another dent the week before and another the week before. The first was in my upper arm where my tricep is atrophying. The second is above my eyebrow where I had a scar. The atrophying started with old injuries. My right shoulder was injured waterskiing and that began to atrophy first. My muscle biopsy is on the front of my left leg. That started to atrophy next. Then I noticed my eyebrow. That was a very old injury. When I was a little girl my brother got mad that I accidentally tore his comic book, So he threw an alarm clock at my face. The dial stuck right above my right eyebrow and left a hole. I bled and bled. 40 years later there is a little white line right above my eyebrow. A few weeks ago I noticed it is now dented in. You know, my brother never apologized. No one in my family does. He remained firm that had I not torn his comic book I would not have an alarm clock in my face. Still he will argue that. The old eyebrow injury dented just like my shoulder. My muscle biopsy was 10 years ago on my left quad. Right behind that biopsy on my hamstring is now a dent of atrophy. Old and new injuries are atrophying now. The dents break my heart. They mean that my “non-progressing” muscle disease is in fact progressing. All of my attempts to strengthen my body have resulted in atrophy. I am not saying that I have not progressed in some ways in a good way. In fact I am much stronger now than I was a year ago. A year ago I would have never even tried to go to the beach, walk on the beach, or pushed my body to try and get stronger.
6 weeks ago I got an iron infusion at the Mayo clinic. I dreaded going. My last trip there resulted in an atrophied quad from a biopsy that gave me no solutions. The trip before that gave me a diagnosis with no solutions. This trip I came out with a diagnosis, a treatment, and a plan. It also gave me the motivation to go to the beach, I mean if I could make it 2 hours for a doctor, I could make it 2 hours to the beach! But since the infusion I have developed severe joint and bone pain. Currently there is no answer as to why. There is no answer by my neurologist as to why my muscles are atrophying in a disease that does not cause atrophy. There is no answer as to why my Lyme disease titers are still positive even after 2 years of treatment.
I’m left with dents. I could create some great metaphors and analogies for these dents. I could go into the pain in the past and how it shows on atrophy of a muscle now. I could ponder and try to make connections about abuse leaving mental dents and how that compares to diseases making physical dents. But I don’t want to. I don’t want to think. I just want to write about how I feel. I feel devastated. I feel with this new discovery of more atrophy leaves me with more unknown from this muscle disease that I ever had before. No one has answers. No one has solutions. I am left with a body that is struggling, atrophying. Mentally that is defeating. “Science will catchup to you and figure it out,” said one of my doctors 10 years ago. No one has figured it out. The Mayo clinic wants me to go back and get more labs done to see what is going on with the after infusion bone pain. My Lyme Doctor already did those tests but that isn’t good enough. Mayo wants to do them themselves. The local lab recently lost my other labs my Lyme doctor ordered for catacholamines, so she wants me to come back and repeat them. My psychiatrist doesn’t want me to do any more PTSD meds until we get more labs. So I sit here. Unable to drive to get any of these labs done that in reality will most likely get me no more answers. I’ve been seeing doctors for my entire life and I am sitting here in my bed in pain, suffering, with no solutions.
My leg has a dent. Today that just seems like the end of the world.