Body Betrayed | Body Disabled

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Wednesday, June 15, 2011

First Week of Not Being a Pastor!

You may be aware that I have resigned as Pastor of Ringgold FBC. I had actually planned to announce this in May--after my three days in Vanderbilt at the end of May 2011--but the devastating tornadoes changed my plans. So, I waited until the first Sunday of June to resign.

It is strange to be unemployed and on disability, but there is no way I can work. This June, I celebrated my 40th year as a licensed minister. I began preaching at the age of fifteen. I had hoped to make a full 50 years in full-time ministry but that is not going to happen now.

It has been a while since I have written in depth. Why? First, not much has changed with my symptoms even though I am getting additional treatments. I still cannot breath and my vision still doubles. Second, my hands are beginning to cramp a lot when I type or use the mouse. That is not a good thing. Third, I have just not felt like writing much over the last several months. I have not even produced a new video during this time.

The plasma exchange (PLEX) really drains my body literally and physically. The smell and taste of the new fluid as it mixes in my body nauseates me. Yes, I can smell and taste it through my blood as it enters my lungs, tongue, and stomach. It takes several days to get over a PLEX.

The treatments help stabilize my condition. Let me explain a little better. For a few days after each treatment, my walking slightly improves and I have a little more stamina (very little). By the end of the week after treatment, I am back to where I was before the treatment. After two weeks, my condition has declined just a little worse than before the treatment. So treatments are keeping me stable or on a slow, long decline. In the near future, I may get PLEX every week.

I was out of the Alpha Lipoic Acid for a few days. It helps with the pain of the small fiber neuropathy. It does work and I do need it. I have had a lot of small fiber nerve pain over the last few days and regular pain killers are not very effective in controlling the pain.

My autonomic nerves (they control all bodily functions) have really been acting up in the heat. My blood pressure is up and down and I can get dizzy and feel faint very easily. I overheat because my sweating is reduced.

During my last PLEX treatment at Vanderbilt, Dr. CL stopped by and we had a good conversation. He has been reviewing my case and thinks I may have another condition along with Myasthenia Gravis, Small Fiber Neuropathy, and Autonomic Neuropathy. We have talked about this before but never really came to a clear diagnosis because my symptoms are so weird. He thinks I may have Amyloidosis and tested me for it through blood work. I should know the results is about two weeks.

Amyloidosis is a very serious disease and could be the cause of my Small Fiber and Autonomic Neuropathy. Of course there is no cure and it is often fatal. We shall see what happens!

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