Lows, Highs and Somewhere in the Middle

26Oct12

I know I said I would post yesterday regarding my highs and lows for the day, but of course doctor’s appointments got in the way. That’s okay though, because it actually gives me a high and low to talk about for the day. Up to that point, the high of the day wasn’t going to be very exciting. So let’s start with the low. Yesterday was my neurological visit. I see the neurologist every three months to see how things are progressing as far as my legs and feet. Since my illness in 2009, I suffer from what is known as critical care neuropathy. Now, my low for the day comes through what my doctor had to say. Before we even got into any type of exam, we sat and talked about how I was feeling. I told him I had been feeling better, but everything seemed kind of the same as the last time I saw him. I did tell him I stopped wearing the braces about a month ago and how I felt about that.

Then we get to my low for the day. he said that I need to understand that patients who have critical care neuropathy typically have very serious illnesses that have caused them to be this way. He said, quite frankly, most people who have this are so sick that the neuropathy is the least of their problems and they usually do not survive. He told me that I am a unique case in that I survived something that I probably shouldn’t have ever survived and unfortunately I was stuck with the consequences of the survival. He went on to say that there is little research done about the subject because there are so few people who live with it long-term. And he also said that most often it is not something that ever really goes away.

Needless to say, it was a little depressing, but I had been preparing myself for this for a long time now. All I have ever really wanted was for some doctor to give me some type of resolution and here it was for the taking. Okay, I can live with this, this is what I really wanted know. I wanted to know what it is I have to deal with for the rest of my life.

Now on to the high. He went ahead and did his exam, testing my feet and seeing how I walked, what I can can’t do, the same stuff he always does. He also checked my reflexes, which he does every time as well. This time, he spent a little more time on my left leg than usual. My left leg has been weaker than my right since I got out of the hospital and is more sensitive to pain. He checked my upper leg and lower leg over and over, pressing and poking. Yes it hurt. A lot. It always does. He knew that already. He looked up at me and asked “do you feel that?” I said of course I do, it hurts. What he was encouraged by was beyond the pain, however. He knew it hurt, he told me, but you actually had a nerve reaction to it, which is a good sign. He seems encouraged by the whole thing. He then tells me he thinks I have a good chance to recover, he just doesn’t know how long it could take. It took me 3 years to get to this point. He said it could be another 4 or 5, maybe even longer, but he can envision a day when I can walk without pain and perhaps normally again. No, of course he prefaced this with what is normal now may not be what normal was 3 years ago, but that’s okay, at least it is a glimmer of hope.

The other thing that made it a high was that he told me he wants me to get off taking Lyrica. Neither one of us thinks it’s helping much anyway and I hate the side effects. Unfortunately, Lyrica is not one of those medicines you can just stop taking. It’s a slow process and I am on a high dose now, so we have to slowly step down off of it. It will take months, but he says by this time next year, I won’t be taking it anymore. It was all pretty encouraging to me and I left feeling good with the hope that things are looking up. That trip to Dublin really was a life changer.

Anyway, that was my high and low for the day. Hopefully you tried it out on your own and can talk about it at your dinner table from now on. I also asked a few people on Twitter about it and got responses from James L. Brooks and Goldie Hawn. If you want to see their replies, you can check the comments section from my last post.

Well, this post went on a little longer than I had hoped, but for the next post I would like to get into a pet peeve or two I have lately regarding a couple of things. I also want to do some future posts on the World Series while it’s still going and talk a little bit about Halloween in the coming days as well and some of the spooky things that go along with it. We’ll get to all that though. There’s plenty of time. Unless of course Hurricane Sandy sweeps us all away on Monday. We’ll see what happens.

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