I saw the Doctor today

I saw the doctor today, and he saw me. It’s an annual ritual that has been going on since I was nineteen. I’m fortunate to have known this man for most of my adult life, especially the last ten years. This is a man I trust implicitly, and in turn, the others that he would send me to, which leads us to the topic of this blog.

Most of my friends know that I have been having health problems for several years. I kind of fell off the planet for several years; rarely left the house, still don’t. At the same time I stopped going out because getting around is tough, I realized part of it was I just got tired of trying to explain the problems. An explanation always brought a sympathetic response, which even well intentioned, was not something I cared for.

So to answer the question; “What the hell is wrong?” This will be the answer I will refer all askers to.

In 2005 I experienced excruciating pain that radiated through my right shoulder and chest. It was like a hot ice pick constantly being twisted. My right arm and hand became useless.  It was at this point a prominent neurologist was brought in to run tests to determine if there was a neurological reason for it. The testing confirmed that the nerves were not functioning correctly, and a medication was recommended. I spent most of 2006 in bed, as much from the side-effects of the drug as the pain. In 2007 I took a desk job and learned to deal with the pain and slowly rid myself of the medications. In 2009 the pain became body wide, non-stop, and the level went to indescribable levels. I also suffered from a lack of strength and stamina, and my hands would tremble uncontrollably.

The 2009 visit to the doctor would be the one that changed my life. I was not going to be able to work. Until we could determine what was wrong, continuing to work could cause irreversible damage. They recommended I apply for disability. Applying for disability is a subject for another blog. At this point the medical procedure to diagnose the problem is by trying different drug regimens until something works. First you build them up in your system, and then if they are ineffective or the side-effects are intolerable, you back off. Sounds like fun so far, right? So what happens when nothing works? This is where it gets interesting; you start taking drugs whose side-effects may be beneficial to your condition. Same drill, ramp up, then back down. In 2011 I made the decision to stop the medications. We had tried everything, improved nothing, and learned very little.

I would spend some time on side-effects, but I’ll make this easy. Most of the drugs came with an information pamphlet to tell you about the drug. The first page will tell you what it treats; the next ten will list possible side-effects. An important note here: many of these listed death as a side-effect. When did death become a side-effect? In honesty it might be preferable to some of the other side-effects these drugs cause.

So, to answer the question; the pain falls under the heading of Neuralgia and can be referred to as idiopathic neuropathy. The lack of stamina is caused by Myasthenia Gravis. Neither will kill me nor shorten my life expectancy. What they have done is cause me to make drastic changes in my daily life. No more buttons or zippers. Shoes and socks have been replaced with sandals and slippers. Research is used as pain management instead of drugs. On the really bad days, pain management is to stay in bed. Everything has to be taken in small steps.

I continue to have an active life, just at a much slower pace. My best weapon to combat the pain is to exercise daily, with a goal of increasing the level of exercise over a few months, possibly years. The goal is to return to work. I miss working, I miss the people. Maybe it’s just that I miss feeling useful. Maybe it’s a combination of them all.

Today’s visit doc and I reviewed the progress over the last two years, and we both agreed that some progress has been made. This is what I’d been hoping for; a glimmer of light at the end of this horrific tunnel. I wasn't willing to wait any longer; I needed the answer to the one question that haunts me daily. So I asked.  “Do you think I will ever be able to go back to work?” I wanted the truth and knew I would get it from Doc. He knew there was no need to pull punches with me. His answer you might have guessed was not what I had hoped for. He wouldn't rule it out, not impossible, but very unlikely.

Something new to come to terms with, but in reality my research has given me a head start on how I want to spend my time. The family research has led to enough information for a book. This can be the legacy I leave for my descendants. On the good days, I’ll write the book. Suddenly I’m feeling useful! My other immediate goal is to attend a car show. I miss going to the shows, but by the time I walk from parking to the show, I’m spent. The Route 66 show is in September and I plan to attend. I may not see it all, but I’m going.

One last thing and I’ll end this diatribe. If you see me out, know that I neither want nor need sympathy or pity. There are many people in this world who are much worse off than I am, and I have outlived many of my peers. I’m on top of the grass, surrounded by family and friends, sucking air and taking nourishment.

What more could a man want?