July 18 2015

July 18 2015 Greetings My Friend Today my hands are real shaky. Tomorrow they may not shake so much. Today I am moving through the house with hardly a wobble and who knows what tomorrow will be. The straining headaches come and go too. Same with fatigue, today I can predict fatigue better due to how much activity I am involved in so I have learned to come to a complete halt, sleep it off and start over again. With my chronic illness I look great one day and the next not so good. It has taken me a few years to learn the warning signs, to be proactive the best I can. I don’t like what my body is doing but I am learning to keep trying and how to live with day to day fluctuations along with consistent decline in what I used to be able to do. July is Chiari Malformation month, this is a disease that little is known about and misunderstood greatly. I was only recently diagnosed with this and now I can look back and see where I have struggled a lifetime with this. As a young person I was extremely agile and all of a sudden I found myself tripping over thin air. I had other signs as well. Today I understand better. Not fully but better. The more I learn it helps me to accept and accommodate to things. At first it was a diagnosis which the doctor’s said I would not get worse. After joining a few help sites I am learning that this is a progressive problem, that brain surgery only halts for a time the problems and causes havoc with the neurological system. Some people may never be diagnosed due to lack of symptoms, some of us come to our diagnosis later in life so there is not a lot of information. As I move through this disease I find that my mind is consistent in looking for ways to do old things in a new way. It is keeping my mind active and I am discovering a more creative side to me. At first I was angry, depressed and slowly but surely I have accepted this disease. Finding life to be good and whole is a strange kind of wonderful. No I am not whole like I once was. No I can no longer do everyday things as I once did but I can learn new ways to do them, I learn to accept what is and I am learning to move on. First comes the acknowledgement, next acceptance and once I fully accept this new life I see growth and in some ways a deeper faith, a deeper resolve grows too. Along with the initial diagnosis I find that we also have sister related problems such as breathing (for me allergy induced asthma), digestive issues, mine is GERDS and with each new finding it means more introspection on how to deal with the obstacles. I also have dizziness and I am learning those trigger points so that I don’t fall as easily. It is a never ending self study of learning the problems and then how to cope. With all this self reflection my mind is staying active too although there are days that brain fog tries to take over too. With each struggle though I keep working and my will helps me to keep on going. May God bless you and keep you make His face shine on you. Love Janet