May 182017
 

My health continues to be an adventure. My neuropathy continues to worsen steadily; I no longer have any significant sensation in many of my toes, and my feet are always in a state of “pins and needles” style numbness. My legs are almost always tingling so hard they burn, or feel like they’re being squeezed in a giant fist, or both. The result is that I have some issues with my feet not always doing exactly what I expect them to be doing, and I don’t usually know exactly where they are.

For example, I have voluntarily stopped driving for the most part, because much of the time, sensation in my feet is so bad that I can’t always tell whether my feet are in the right places. A few times, I’ve found myself pressing the gas and brake pedals together because I didn’t realize my foot was too far to the left.

I also trip on things a lot more than I used to, since my feet wander a bit without my realizing it. On January 2, I tripped over a chair in my office while carrying an old CRT monitor to store it in my supply cabinet. I went down hard on my left knee and landed on the monitor I was carrying, taking it squarely to my chest. My chest was okay, just a little sore, but my knee was badly injured. The swelling was pretty brutal, and it is still trying to finish healing up more than four months later.

Given the increased problems with my leg pain, my neurologist recently had an MRI performed on my lumbar (lower) spine. An instance of severe nerve root compression was found which is possibly contributing to my pain and numbness in my legs. We are working to schedule for them to attempt to inject medication at that location to try to reduce the swelling that’s causing the compression. If successful, that could help temporarily relieve some of my symptoms.

But the neuropathic pain in my neck and shoulders continues as well. There is some discussion of possibly once again looking at using a neurostimulator implant to try to neutralize the pain signals that are being falsely generated. Apparently I’m once again eligible for this after a brief period where my symptoms shifted outside the range of those which are considered appropriate for that type of therapy.

In addition to the neurological issues, I am in the process of scheduling a procedure to repair some vascular leaks in my left leg, which may be responsible for some swelling there that could be in part responsible for some of my leg trouble (although that is increasingly unlikely given other information that’s come to light since we started scheduling that work).

Then you can top all that off with the side effects of all the meds I’m taking. I take at least six medications which have the side effect of “drowsiness” or “fatigue” or “sleepiness.” As a result, I live in a fog most of the time. Mornings and early afternoons are especially difficult. Just keeping awake is a challenge. Being attentive and getting things written is a battle. I make progress, but slowly. Most of my work happens in the afternoons and evenings, squeezed into the time between my meds easing up enough for me to think more clearly and alertly, and time for my family to get together for dinner and other evening activities together.

Balancing work, play, and personal obligations when you have this many medical issues at play is a big job. It’s also exhausting in and of itself. Add the exhaustion and fatigue that come from the pain and the meds, and being me is an adventure indeed.

I appreciate the patience and the help of my coworkers and colleagues more than I can begin to say. Each and every one of you is awesome. I know that my unpredictable work schedule (between having to take breaks because of my pain and the vast number of appointments I have to go to) causes headaches for everyone. But the team has generally adapted to cope with my situation, and that above all else is something I’m incredibly grateful for. It makes my daily agony more bearable. Thank you. Thank you. Thank you.

Thank you.

 Posted by at 11:15 AM