Two weeks ago I was in the ER trying to get answers. Two weeks later there is still no solid answer but more and more possible answers are getting eliminated as results from various tests and such come in. So I haven’t gotten the answer I was looking for but we are getting closer and closer to one. It is strange to be getting so many results but not an answer.
I had my first follow up appointment at the outpatient neurology clinic at Johns Hopkins this week. They showed me the images from the MRIs that were done when I was at the hospital two weeks ago. I got to see where and how my spinal cord is swollen and even got to see how the spot looks like the Star Trek communicator symbol, which is kind of neat. I didn’t get much instruction from the doctors as far as daily life goes other than some fall prevention and home safety tips because I feel a bit unsteady on my feet when I am very tired or overheated. They ordered more blood work and some lab work. The doctors want to do the MRIs again to see if there is any change and they also want to do a CT scan of my chest to rule out a lung condition. The doctors did have my eyes scanned while I was there and I just looked at the results today. The results were typical of what they see in MS patients but they still haven’t given me that diagnosis. They want to see the results from the new MRIs and the CT scan to rule out some other things.
Now that my brain is no longer in crisis mode different waves of feelings have started to hit me. I get frustrated when my fingers on my left hand don’t do what my brain is telling them to do, this happens most often when I am playing my ukulele. I have been playing daily to keep those fingers moving and hoping that the dexterity that I used to have will come back. I am also hoping that muscle memory will outweigh whatever kind of signals might be getting mixed up along the way. Yet seeing and feeling the ways that my body can’t do something open up cracks for fear to seep into. Even though I am feeling better than I did a week ago I am still scared that I won’t be able to blacksmith. I’ve avoided my workroom since getting back from the hospital because it is full of things I might not be able to do again.
I have been reluctant to do various kinds of physical activity because when I came home from the hospital it was really difficult for me to see/experience all the ways my body couldn’t do the things it had done before, even with simple stretching. I have started to stretch again and have been pleasantly surprised to discover that I can in fact do some things that I couldn’t do a week ago. Last week I couldn’t touch my toes doing the life nerve stretch and last night I touched my toes! It feels like such a small victory but I’ll take it.
Most of the time I am doing alright with all of this but I can’t say that I’m ok with everything in every moment. Some moments I handle more gracefully than others. The moments that I don’t handle well seem to be moments where I forget about or choose not to use the various tools in my toolbox, music being one of the most powerful ones. So I am going to make sure that there is more music in my life, whether it be singing, listening to, or making music.