July 2, 2016

Greetings My Friend, I have found the information for now I need to be at peace. I still do not have an answer but I have found enough information to be comfortable with what is going on inside of my body. My tests results came back that I do not have Mysenthis Gravis or a Vitamin E deficency which was discouraging but not as much as before. Talking with my PCP we both thought that I was presenting as MG and for me researching MG has given me ideas of how to manage my day to day life which is working for me. My slowing down even more so and making myself rest for a few hours each day along with using the wheelchair or scooter when I am out has given me energy to do routine things like clean where my abilities will let me, cook, sew and put food up. When I am out using the wheelchair the running around still tires me out so again the wheelchair allows me to last longer than if I was walking with an aid like a walker or a shopping cart. I also am strengthening my core muscles so when I am at home I am able to do part of the day on my own steam especially in the kitchen where it is easier to walk holding onto the table, chairs and what have you. Sitting to mix ingredients, cut up things etc. saves me more energy. I usually work for an hour or two in the morning and I rest for a few hours in the afternoon. After dinner I may get up and do a few more things or do something like sewing or cutting squares for the quilt I am making. Because God led my PCP to look at MG and led me to research it I find the information given to benifit me more than Chiari Malformation and Ataxia has. Each of those other disorders gave me some information that is helping me as well but MG is giving me the most for now. In the meantime my PCP is helping me by referring me to an ENT and if this does not give us any answers she will send me to an university hospital. This too gives me peace because I feel like for the first time in a very long time that my disorder is being taken more serisously. I am not being passed along like the 2 neurologists have done with me. When I started talking with my PCP I wanted to have answers and a game plan. Today I am good with the referring me and somethings that are helping me. I see where God has been intervening on my behalf for some time. I can clearly see my time in VT helped me and my therapist gave me a piece of critical information. She told me that I had slowed down a lot but I needed to slow down even more. I was confused but she taught me that my rest periods needed to be even longer and slowly I realized that all the time on my feet needed to be less. It was a hard decision to use the wheelchair when I am out but I am very glad I overcame my pride and started using it. Because I did these things I can feel productive and useful again. Resting is vital to my vitality. I am even finding that I can take off without the walker for longer periods throughout the day and my knees are not buckling as quickly. I do not allow myself to walk all day on my own steam but I am able to do so without worry. Getting down on the floor and balancing then rising up has gotten easier because of the squats. I am grateful for the hand rails on a doorframe because I can grab onto those and do the squats so when I get down and rise up my thighs do not waver as much. God has opened the knowldege I needed to bring me the peace I was searching for and I am gratefully at peace. May God bless you and keep you make His face shine on you. Love Janet