I want to give you a long overdue physical update on me, so let me see if I have gotten a good enough handle on everything to share it coherently!
First, let me say that overall, I am still happy with my decision to remove the pump, and I am in no way complaining about any part of the symptoms or issues I am about to share with you.
Let me start off with that annoying burning torso that I have spent so much time talking about in previous blogs. It is still there, still intermittent, still hard to predict and/or manage. It is less intense and there are days when it isn’t present at all.
The urinary retention issues, which boil down to a neurogenic bladder, were much better as the baclofen dose in the pump was removed and early on when I wasn’t taking any medications that depress my central nervous system.
In order to function upright, I had to start taking those medications to better manage the ridiculous clonus symptoms, which has led to an increase in medications to help me empty my bladder.
It appears that the medications for the clonus relax the bladder, but not the urinary sphincter. The bladder muscles need to contract to squeeze out the urine and the sphincter needs to relax enough to let it through. Mine aren’t doing the right things.
If the latest increase in medications doesn’t help consistently enough, I will go back and learn to self-cath. It sounds awful, but not being able to empty my bladder is far worse.
I am functioning upright with a new (and quite sporty looking) walker, and in small spaces and short distances without a walker, if my legs feel cooperative at the time. While I am using up energy focusing on raising each leg to make sure I take full steps with my feet off the ground doing this, it is what I am choosing to do for now.
Could I conserve energy by spending some of my time in a wheelchair as the physical therapist suggested? Absolutely! But I am choosing to arrange my schedule so that there is recuperation time in between activities that require a lot of walking. So far, I am ok with this arrangement because I do not want my legs to forget. It has been ok, even with the increase in hours at the Homeless Emergency Project and an additional online class to teach.
While I am driving short distances, I have figured out that I am having difficulty accelerating and sustaining the same speed. If this gets any worse or I start to feel more uncomfortable, I have already started researching the possibility of adapting my car with hand controls.
The jaw clonus continues to be an issue, so whenever I am home working on my classes or recuperating, I always wear my bite guard. It seems to be the best solution I can come up with at this time and it will do.
I am thrilled that even with the increase in working hours that I am able to keep my house clean and take care of all of those day-to-day things that are needed. I am making it a point to get enough sleep and to have enough down time before bed as possible to make that even better.
While there are issues that quite honestly suck, for now, I think I have made those just about as manageable as possible. Should any of those sucky things get worse, I even have some tentative plans in place for that too.
I have simplified and streamlined just about every area of my life in recent months and am taking all of this as it comes. This frees up my brain space to be in the moment, which is a wonderful thing.