My world was abruptly and unexpectedly turned on its head during the fall of 2024 when I was diagnosed with statin induced necrotizing myositis, an autoimmune disease that results in proximal muscle weakness. For me the impact was severe weakness in my legs, arms and shoulders, and neck and throat. I knew nothing of the disease, but this diagnosis was better than my feared diagnosis of ALS, and with the diagnosis I could now focus on managing the disease and regaining my mobility.
Unfortunately, this was easier said than done. Getting treatment was slow. The initial treatments did not have an immediate impact (as predicted by my neurologist), and the disease continued to aggressively attack my muscles. Between my diagnosis in early October and Thanksgiving weekend, I went from being self-sufficient to being completely immobile. In October I was struggling to go up stairs, get out of a chair and put on a shirt but I was walking and able to deal with my personal needs. By the first week in December I could not get out of a chair, walk or raise my hands above my shoulders.
This low point marked the start of my journey to regain my strength and mobility. A journey that started with a six day hospital stay, continued with an almost six week stay at a rehabilitation hospital, and continues with a four week stay at a skilled nursing facility. It is the second week of February and I have not been home since the day after Thanksgiving. At this point, I am not sure when I will get home and I am not even sure what success looks like.
My journey has included a wide spectrum of emotions. Challenges that have been terrifying, frustrating, demoralizing, infuriating, inspiring, successful, joyful, and funny. It has also included many sleepless nights spent reflecting on my experiences. Reliving them, reflecting on my successes and failures, and keeping my emotions in check. Making sure I did not let my failures deter me and I did not get overly confident in my successes.
During these sleepless nights I also convinced myself that I needed to document my journey. Initially I felt this would be therapeutic and help me maintain a positive outlook as I encountered new challenges. I also thought there may be others facing similar challenges that might benefit from my perspective and there may be others who have an interest in reading about my recovery.
So what follows is a blog that I am selfishly writing primarily for my benefit, but hope it provides some benefit to others. New entries will likely be slow to come as I am not a very good writer, I am still very focused on my therapy, and my ability to type up a document is still very limited.