November 21 2015

November 21 2015 Greetings My Friend, It is cold outside and cooler in the house so I find reasons to sit a bit longer with my blanket wrapped around me and a cup of coffee close by. While sitting I find myself poking around at different thoughts and I begin chewing on Chiari Malformation and its progression in my life. When I first learned about this disorder I realized I have lived with Chiari’s effects for most of my life. If I had tried to get answers I would have been told the symptoms were in my head “figuratively.” Little did I know it was literally in my head. So goes life. I have never had great stamina but I worked with it. I had days where I was totally exhausted and slept all day. After a day of sleeping I usually could pull it together to begin my arduous schedule of being a wife, mother, student and hold down a full time job. Next I saw time where all of a sudden I tripped over air. I was agile but all of a sudden I tripped and sprained an ankle or such. I thought I was clumsy. I remember having a flash of a headache way back in elementary school. It could have been my Chiari, hard to say. After my accident of rolling down the hill and breaking a vertebrae an MRI detected this birth defect. It took me a year or more to begin to put together these symptoms. I joined an on line help site or two and slowly pieces of information began to gel as to what I have had dealt with for a lifetime. Many days I recall a period of time that my neck hurt so bad I had tears. Nothing helped it and either I grew used to it or it settled down. I had other symptoms like I could barely lift a pan of water and I felt like I would drop it because my wrist felt so weak. When I married Junior he introduced me to his Chiropractor who gave me a special pillow that supported my neck. I recall those severe neck moments happening less often. I hardly paid any attention to the times I needed to stop and sleep for a day or two. It was a part of my life and I figured most people had these moments. When I started to see that a lot of the things I was experiencing were also things other Chiari friends dealt with it began to make sense to me. My fatigue got so bad just before I retired that I could not do my daily walk. I spent time taking a nap instead just to get myself through the day. I started having a nasty flash headache and vomiting. Nausea and intestinal upsets were plaguing me. I could not sleep for more than an hour or two at a time and I had brain fog so bad I could not think my way out of a paper bag. One tiny step at a time I worked my way back to a semblance of energy. One day I discovered vitamin b 12 and from that point I increased my energy level. I was taking supplements, I started using a CPAP machine and one tiny step at a time I kept building up again. I felt that was the answer I had been searching for but I soon learned that chronic fatigue could come crashing back. I then learned my triggers and one day I realized that I may know some more energy but I was never going to be as energetic as I once was. I learned how to tame straining headaches like making sure I ate enough fiber or kept my allergies under control which meant the coughing did not set off a headache that made my brain feel like it is bouncing around in my skull. Time has taught me that many symptoms may come and go. I have also learned that some symptoms are never going to leave me completely. I know that chronic fatigue and balance issues are here to stay. I have had to use a walker and I have worked back to using a walking stick again but I also can’t balance with the stick like I did a few months ago. I can use the stick getting to the car or to a shopping cart and I can no longer go as far with just the stick. At present I am able to deal with barometric changes fairly well. There may be a day though that I will have awful headaches ( at the base of my skull). I may end up in a wheelchair down the road. Right now a medication is helping me control my shaking hands. In the meantime I pray that doctors will discover ways to treat Chiari but for now I tell my doctor and together we will do what we can. May God bless you and keep you make His face shine on you. Love Janet