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I worked for over thirty years. There were a few small jobs. I did a few jobs with the telephone companies, many in restaurants as a supervisor, an assistant manager, or waitress. I liked being a waitress the best. I like people very much. To see them smile, or bring in their families gave me a good feeling. The ones that came in a lot started called me Annie. To me it was special because I knew we had a good friendship. I cherish friendships. I still do. It is an important part in my life. If I call a person friend, I really mean it. The Bible says, A friend loves at all times. I got along well with people. After all it wasnt a personal relationship I had to deal with. They were friends I worked with. So many times it would be hard to form friendships. Because of the hurts and abuse I went through in life I was afraid to get close to people. Men were the worse.
I liked men as customers at work, but when driving home from work if I saw a man driving a vehicle next to me, I felt anger. If I was driving behind them at times I almost felt like running my car into them. It helped that I was a Christian. I could overcome this anger. It didnt stop right away when I became a Christian. God had many issues to help me with. Pain in the heart is hard but I also had physical pain.
I suffered terribly with migraines. These started when I was in my early twentys. They would end up being there for over thirty years. They are horrible to have. Many people get them so I know many readers will understand. Early in 1994 I started to be extremely weak. I stopped being a supervisor and went back to being a waitress. The main reason is because my office was down stairs and I found it so hard to get up the stairs. I did fine walking (although it was slow and difficult I could do it). For the stairs I had to pull myself up or scoot on my behind one stair at a time to get up them. In April of that year I had bad leg and thigh pains. It became increasingly difficult to do much of anything. My boss was trying to keep letting me work but I could not keep up. To me it was humiliating and I was very frustrated. I also needed to work to keep my apartment and support myself.
My regular Doctor sent me for x-rays. They did just regular x-rays at first and found nothing. Later they did a spiral cat scan. It showed I had a pelvic fracture both in the front and in the back. I had not fallen so that wasnt the answer. They did a test to see how my bones were and they turned out fine. There was no explanation as to what caused it. The bones did not heal as it does with most people. Having known of how I was raised they wondered if all the eating of dirt, leaves, grass, flowers and who knows what else, may have affected my bones. They asked if I had polio and I said not that I knew of. Later I did learn I grew up with leg braces because I had rickets. That is rare in the United States I am told, but it would not have surprised them they said considering all I had grown up eating. I am sure I havent remembered it all.
At work I was beginning to get even weaker. The eating area was down stairs and I got where I could not climb back up them any more. Someone would have to get behind me and push on my back to get me up to the top. I was in horrible pain and had little energy to get to the top. I had no choice but to go on temporary disability. I thought I wouldnt be on it long till I would regain my energy. My chiropractor noticed I had huge mass areas of tense muscles. My feet were turning in even more than they had. They had turn in just a little for the last year or so. It didnt affect how I could walk though.
I went to several other Doctors to see if they had answers as to why I was so tired and could not get up the stairs. Unfortunately I was told it was all in my mind. One Doctor told me to go back to work and get on with my life! He didnt even do another x-ray to see if the fracture had healed. It turned out to be a pelvic fracture which they could not cast. I was against a wall: I was in pain and still had to walk. The Doctors told me not to use a wheelchair even if the pain was terrible. They said I would not heal right and become dependent on it.
I went to a chiropractic school where they did a series of other tests. They asked if I had an injury of my back. I told them I had fallen on the ice while skating in 1970 and they said that
what they were seeing was something different. It had to be more severe than that. I told them of the time I was younger. My mom, that had adopted me, was mad because I came of age as a young woman. She threw me across the floor and I landed against the wall hitting my head and back. Then she came over to me and knocked me around a lot more. The chiropractor said that would be the only thing that he could think of that had damaged my body so much. My pelvic bone was also tilted up when they laid on me on the table. Because of an injury it was in the wrong place. It made one leg almost four inches shorter than the other.
Well this still had nothing to do with the health problems I was facing. It was just one more memory. I was sent to still another Doctor. This one did a lot of tests that I didnt understand. The ones I did understand were the MRI and EEG, and the muscle testing which hurts very much. They stick a needle in your (In my case) hand and have to move the needle around. Then he asked me to lie on my back and raise my legs one at a time. I literally could not move them up at all! He kept saying- try just a little but I didnt have the strength to do it. He was able to move it up for me but when he let go it would flop back on the table. He then told me there was something seriously wrong but didnt know what. Here I went yet to another Doctor who examined me. He said with all my problems in life it was my body re-acting to the stress of life. I felt like smacking him but I was nice and didnt! He said he would write me a prescription for some pain pills and anxiety medicine. I told him I only needed pills for pain, not anxiety. He was getting very frustrated with me when I said I was not depressed. I asked him to please just help me find answers. He told me if I didnt take the prescription it would show on my record I was not being a very cooperative patient. I took the prescription and got it filled. Then I went home and threw them down the toilet. I had the inner strength with God. He would help me get through this without a pill.
Eventually they sent me through a battery of tests to find out what was wrong. I knew something serious was wrong with me. A person knows his or her own body. I was getting worse as time went by. One day I could not even write. I would print like a little child and even that was hard. It was hard physically and emotionally because I have always done a lot of art work and crafts. One day I was with some friends and my kids and I had a hard time swallowing even cottage cheese.
The day came I had to face reality. At first I just gave back things I did not really need. That I was making payments on. I applied for disability thinking I would go back to work soon. In the meantime several Doctors worked together sending me back and forth to places for tests. One Doctor did a cervical and elbow down to the middle of my right arm to try to get the arm and hands to work. My hand and arm muscles were getting very weak. That surgery did not work. They then sent me up to a special hospital where they took a piece of muscle out of my leg. There were no real answers except they did see some problems in my muscles. They could not give me any answers although they were acting like they had an idea. By then I was, to say the least, very frustrated. I had to give up my apartment because it was getting to where I had no idea when or if I was going to be able to go back to work. For a short while I lived with one of my kids. It is real hard to live with your children, especially if they are married. Not because you dont care but it just didnt work out and I had real medical needs that they could not help me with. I began to feel I was a burden to them. The chiropractor I was going to had a small house that was made into an office. He offered to let me stay there. He and his wife and kids would at times come and visit me. Then a problem developed. The room was fine, but it was in the basement. I could not get up the stairs most of the time. I didnt know what was going to happen to me.
I went back to the neurologist and she did a DNA test on me. She said it might help them find some answers. I was very happy to agree to do about anything to get an answer. The waiting seemed forever. It would take three months for the answer. They had to rule out everything, she said. What that meant I didnt know. I called the office off and on and probably was getting on their nerves. I was getting worse. I had trouble eating just about everything, was losing my balance, and my legs were twitching. Not knowing was the worse. A little after the three months they called to set up an appointment with me. I just wanted the results over the phone. I had read through the chiropractors medical books and read on MD and MS. I thought maybe it might be MS. When I went in they still didnt tell me. They said they wanted to do a few tests. They did muscle tests and more nerve conduction tests. I used to wonder why Doctors always ask for patients to stick out their tongues in an examination. I always felt odd doing this. I was about to learn why they ask a patient to do this. When I did, I could not hold it still. It too was twitching. I tried to stop the twitching. Place it further back in my mouth to stop it. Then place it out more to stop it. Nothing would stop it.
I knew from the look on their faces something serious was wrong. I also knew that in my heart too. I had known all along, even when people thought I was faking things or not really suffering. There were many comments. Some even thought I just wanted attention. They told me they had ruled out every disease possible including Kennedys disease, which I had never heard of. I learned it was a neurological disorder.
They told me I had ALS, Amyotrophic Lateral Sclerosis also referred to as Lou Gehrigs disease after a famous baseball player that had died from it. It is a terminal disease usually lasting from two up to ten years or more. I found out that usually if it starts in the limbs it is slower moving. That is where mine had started. There is no cure yet as of this writing, but they are doing research on it. It is a disease that slowly robs you of your dignity. Some ask me what it is like. Right now I have been fortunate to not be in the serious stage. Last year I was on a feeding tube and one time my blood pressure dropped to 00/00 but quickly I pulled out of it. I know that was because God was with me right there. It was not my time to go yet.
What is it like to have Lou Gerhrigs disease? I have learned a lot from many that also have it. One thing it does not do: your mind remains clear until the end. You are clearly aware of everything around you. Your muscles atrophy so much you eventually are paralyzed. In the bulbar type it affects your lungs faster. I read one description of it that it is like being enclosed in a tomb. I can only imagine at this point what that would be like. You loose your ability to write or speak. There are a few aids that can help if your muscles are able to do it. One is a headpiece that you wear and you can point to letters to write with it. When I first had problems I had to use a cane. I didnt like it, but I was independent and everyone wants to be that way. I then went to a manual wheelchair, which I didnt like because I had to be pushed. Now I am in an electric one and can be independent. I live in a nursing facility where I have the care I need and still have my own private room.
I have learned a lot of compassion also for the handicapped. I remember back watching healthy people park in the handicapped spots at stores. Now I truly understand how rude that is of them. A handicapped person also likes to be treated as a normal person. Smile at them when you see them. We dont bite! Many times I will break the ice and smile first. And dont worry if your child asks questions about someone that has a disability. They learn that way and by how you react. When a person smiles at me it makes my whole day a lot brighter! So smile and say, Have a great day! In a wheelchair or not I can praise God and be thankful for another day.
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