This is the story of my life as I remember it.
As far back as I could remember, my body never worked like everyone else’s. I always felt different, and not always in a good way. My body was always causing me trouble. For years, my doctors told me I had Arthritis and that there is nothing else really wrong with me. For years and years, they said it was in my head. Well, I guess they were right because as it turns out, I have relapsing and remitting Multiple Sclerosis.
But, for years they made me believe I was crazy because I thought there was something wrong with me. In fact, I was not crazy. My body was trying to warn me that I had MS but, others would not listen to me . For years I did what I could to work a job, take care of my five children, keep a house. I'd ever realized that the harder I worked, the more I hurt my body. Finally, the diagnosis came, after years of pain and having to suffer two mild strokes. So, it only took two strokes, a spinal tap, multiple MRI's, cat scans, a brain biopsy, and the placement of an Omaya reservoir, followed by the removal of the reservoir due to Bacterial Meningitis.
It was remarkable for a doctor to finally admit that all those years I did have MS, and no one had done anything to help me. At first I became very angry at the doctors. I was mad at my body, and I am sorry to say yes I was even mad at God . It felt as though I was being punished for something I had done . But I had no idea what I had done to deserve having MS. Now I know it was nothing I did. It was just something in my physical makeu . Although doctors don’t all agree, some say it is genetics. Others say that it is conditioned by where and how you were brought up. As for me, I believe I got MS because it ran in my genes.
My biological father’s brother had two kids who has MS that I know about. One died from what doctors often refer to as "complications from MS". I say he died from his MS . Now that I face my disease, the fear I felt at first is now anger directed at my body, and wanting to make the whole world understand what it is like to have to live with this monster. People just don’t get it . Things can be good some days. And then the very next day, it can be a very very bad day. There are some days when I feel like I can do anything and there are days when I can’t do anything at all. My goal is to make the most of life while I can.
There are many things I have yet to face. In time I will face more and more difficulties as my MS progresses. I know there will come a time when I am not able to fake being okay any more, but until that time comes, I need to let my family take care of me when I am not able . This is very hard for me to do. Ever since my diagnoses, I have had to learn so many new ways to do things. For example, doing house work has been modified, so there is less bending and standing. I have had to learn to rest in between doing different things. Lately my health has been sliding down hill, so I have to learn to come to grips with what’s happening now to my body. The fear of what could happen to me, scares the day lights out of me.
I had just started living the life I really wanted. I finally have the real love of a man who understands what I am going through. I am still afraid of what will happen. But, I know he won’t leave because of my MS. He has it too. To have someone who truly understands what it is like to have MS, is so very important to me. Now that I have the life I want, we are starting a business of our own. I will not let MS stop me from getting better and better at selling my homemade cheesecakes, cookies, breads, and animal treats.
When I look into the future, I see my life might change. But I won’t be alone. With Todd by my side, I am not afraid to face this monster. I know alongside him, I can face anything, even if I don’t like it. Facing MS is like riding a roller coaster. I hate roller coasters. What it would be like if I could get off this ride.
I know I can’t. So I am determined to beat this MS the best I can.