For a brief time, I was Teaching Pastor as Liberty Towers Church in Sacramento, CA. I really enjoyed my time there. Pastor Terry, the staff and the people were so wonderful to me. Easter Sunday 2104 was my last Sunday to preach there and many people are wondering what happened.
The morning of March 24 was a very bad day for me. Besides being a very painful disease, I have other Neurological symptoms such as seizures, double vision, hearing loss and dystonia. When I awoke that morning I had seizures for about 2 hours and went to the hospital.
Dercum’s Disease (Adiposis Dolorosa) works in cycles. During an “Up” cycle I feel better, have less pain, few neurological symptoms and can be more active. These “Up” cycles last typically 8-12 weeks. The “Down” cycles well.. you can imagine what they must be. Lot’s of pain, lots of weakness, seizures etc. and they last much longer, typically six to nine months.
Each time I enter a down cycle I come out of it weaker than before. The disease is literally consuming my body. I have so many tumors we quit counting them. Yes, they cause pain but they interfere with many things in my body and there is nothing that anybody can do to stop the progress of this disease.
This disease is so poorly understood that the doctors really don’t know what the future holds for me. Perhaps the scariest part is the dreaded “D” word… Dementia. It is one of the symptoms of this disease but nobody knows for sure if or when it will happen to me. I always assumed that if dementia was happening to you that you wouldn’t know it but that is far from the truth. You are the one most acutely aware of what is happening to your body and your mind. Long before it shows up on any brain scan, you are the one who knows about the times when you were confused by simple things that were never confusing before. Have you ever experienced walking into a grocery store and then paused in the frozen food isle only to realize that you don’t know how a grocery store works? This sounds so bizarre it’s hard to believe but it happened to me. Of course, the effect was temporary.
My decline is slow and sure, like the sand on a beach being slowly washed away by the waves, sometimes better, sometimes worse. How long will this go on? No one can really say. According to the medical literature “The effect on mortality is unknown”.
In this most recent decline I have once again had to face the facts.
- I can no longer live alone
- I can no longer drive a car
- I am unable to care for my teenage daughter
- I am almost to the point where I will require nearly constant supervision
For me to live in Sacramento, I have to pay rent and hire someone to drive me around and assist me with things I need help doing. By moving to Fresno I can live with my mother and she can help take care of me. It helps me, and it helps her because I have disability income to provide for her. It is a win-win for my mother and I but at the same time very sad that I had to leave Sacramento and Liberty Towers Church which I loved.
The next time I get on a “Up” cycle, perhaps I can ride a train up to Sacramento for a visit.