Man. It sure has been a while. I am thee suckiest blogger ever, eh? Oh well. I will forgive myself.
I just wanted to touch base regarding my silly body. I am not sure where I left off, but in the past 2.5 years, I have been dealing with a lot of pain, flare-ups (usually due to spasms in various places) and joint issues. This all came about immediately after my hysterectomy and subsequent medication toxicity (which caused neuropathy and liver injury).
Anyway, many many many appointments, specialists, tests later – I am in physical and occuationational therapy and it is helping a lot.
I have said many times before that PT and OT have been helping me physically. The fact that I could make it through a trip to DC (a shit ton of walking in the heat) without a major flare is so encouraging. I seriously couldn’t be happier with the care I have been getting at PT Plus (in Mount Pleasant, WI – they also have an office in Elm Grove).
I also feel I should touch on how it has helped me mentally. Having this invisible, nameless group of physical issues has been a serious mindfuck. People roll their eyes, doubt my limits and even I start to wonder if I did all of this to myself (as silly as that is). Some act as though it is an effort issue. It is not. No, a gym membership will not make this go away.
At my OT appt this week, he said (almost to himself), “Man I feel bad for you.” He said this as he was working on my muscles and joints from the bottom of my feet to the top of my head. There is almost no part of my body not jacked up in some way.
When I heard him say this, I wanted to cry. To have someone validate what I have been feeling for over two years means so much. An untrained person cannot see or feel the problem. And since I do not want a prescription, regular doctors are uninterested. My PT said that most doctors are used to treating “horses” – that is what they know. She said, “Unfortunately, you are a zebra.” Zebras take too much time. And really, with the load physicians are forced to take on – I cannot really blame them. The whole system sucks.
So I may not know exactly how all of this happened – though most of it was clearly due to surgery/complications – I guess at this point, it doesn’t matter. I spent a long time searching for the whys mostly just so that I could attach a name to it – so that I could be taken seriously. But honestly, I don’t feel that is necessary – at least for now.
I do have a lot of pain. Thankfully, it isn’t usually a debilitating kind of pain that I have seen others deal with. When I am not in a “flare” – it is just more like chronic aching or soreness in a variety of places. The pain spots move around and sometimes only hurt when touched or moved in a certain way. This is because some of my muscles are hypertonic, some are incredibly weak and some are just not automatically responding at all. Part of my treatment is actually retraining my brain to communicate with certain muscles. It is all very weird and it can be super frustrating. But as always, I know it could be much worse.
It was upsetting that I couldn’t keep up with others in DC and had to take a cab a few times instead of walking. It is depressing as hell that a day on the boat could leave me with spasms for days. I hate that I cannot do and enjoy the things I could easily do and enjoy just three years ago. The disappointment I see in my husband and the frustration I carry within myself – it is extremely difficult for me to deal with sometimes. The exhaustion is a whole other aspect that is life changing. I hate this and it makes me very angry and extremely lonely. I really really want my body back. I am trying like hell to do everything I can and stay med free.
Thankfully, therapy is helping – both inside and out. And my OT actually said the word “promise” in regards to my getting MUCH better. So I do have hope. And I am grateful. And to have someone who understands is absolutely fucking priceless.