I know you already know what I'm thinking, yet for some reason I'm feeling compelled to write this blog entry as a letter. I suppose it will make me feel better. It's also one of those entries I'm writing to keep track of my life, but maybe someone will find it interesting. You just never know.
Before I decided to take Ampyra, I could hardly walk. You know. I would walk a little way, then I would sit on my walker and someone would pull me. I just read through about 1,000 pages of my medical record because I asked it be sent to me, so I figured I should go through it, and it says I could hardly walk. I also had trouble writing, and my right side has always been more affected. All this can happen when a person has MS for over 20 years. Remember when sometimes I would come home from work so exhausted that I would get a piece of bread, sit on the nearest chair, and eat it?Though I still get tired, it's not as bad as the bread example. Of course you know that.
Once on Ampyra, I started physical therapy (PT) because I somehow had a revelation of sorts that I
could only get so much better on my own, and I really worked hard at PT for about 2 years, before gradually easing off as I began to be able to do more on my own, some of which I had previously done at PT. Remember how I started at .2 miles an hour and got to 1.8? And if felt like real walking at the end? I wonder what it's like for people to just walk. I watch them, people, just walk. Looks so easy.
So at that recent appointment with my new neurologist (because of switching qjobs, and thus, health insurance), you know how I mentioned my numb right fingers because his last question was about numbness? And then he got a questioning look on his face, and said that type of numbness wasn't normal (is anything?) for someone with MS, and that I needed to be tested for something else. Was
that your trigger to clue me in on something, God... everything is not as it seems? Is that it? So then
of course I was tested, diagnosed with ulnar neuropathy, aka corbital tunnel syndrome, and told to have surgery. (This is actually a common bike injury from putting pressure on the handles of a bike,
much the same way that I put pressure on my hands when using my walker.) So you got me thinking... not all things are as they seem, and though I had thought my MS was getting worse in my hands, in reality something else was going on. Want me to tell others, God, that MS can cause weakness, but weakness may be something else? Well, I did tell some people. But then this was a trigger for something else I needed to know, right God? It was an important clue. I know, I wasn't really getting it yet. I needed more help, right?
I went back to PT, at a different location, because they had a 7am appointment so I could make it to work. So that initial evaluation and next appointment was another example of everything not being as it seems. MS has always affected my right side more. But in doing various exercises, my right leg is now the stronger side in many ways. A ha! I get it now! And in doing other exercises, my core muscles are stronger on the right. Talk about flip flop! Now what? Now I am a mixture of mostly right stronger and some left stronger. God, what is the deal here? Getting both sides the same?
Everything is not as it seems. Really, it's a big mess of stuff, whether it be my legs, or whatever, and we try to make sense of it and do the best we can. Like when my daughter brought this stuff in the Stump the Pastor bag... a mess of stuff... And you, God, help us take that stuff and somehow hold things together... Today I'm sad for someone else, and it seems like a big mess. But you'll help people get through that.
And you'll help me get through whatever and hopefully, do the best I can. I'll look for clues that are out there to help.