February 11 2016

February 11 2016 Greetings My Friend I was at the dentist recently getting my teeth cleaned and I began a conversation about my ataxia with the hygienist. I discovered that she has ataxia too. I was elated to have someone I know personally although minimally that has my disorder. For some reason I did not feel so alone even though the online support groups are very supportive and helpful. She is seeing a neurosurgeon who understands this disorder and was able to enlighten me further. I took the name of the neurosurgeon and will ask my doctor to set up an appointment, this is the way it done out here in SW Virginia. My neurosurgeon said I would not progress, did not tell me I had ataxia and did not educate me on either ataxia or chiari malformation since that is what I went to her for in the first place. I learned more with the online support network. I learned I also have ataxia and I am presenting as ataxia more the CM from my PCP patient sheet I receive and the audiologist I am seeing about my balance issues. When I finally asked my PCP she seemed surprised that I was not educated. I feel like I have been lost in the shuffle of medical mumbo jumbo and that feeling of not being worthy of information was overwhelming. The hygienist and I shared some of the struggles we have with people not understanding our invisible illness. It was at that moment the fog of confusion and the reality of my disorder took shape for me. I have been writing and attempting to educate others but I still felt so alone and different. I am learning the importance of community not only within the church but in day to day life. As a young at home mother I was alone because at that time in history most women went into the workforce. I had a child with multiple problems like delayed speech, anger which later I learned is a problem with people with hearing difficulties, poor eyesight but great physical ability and allergies. In later years I learned about ADHD and he was that and more at times. I needed a community of support. I only received comments that I spoiled him, he was a handful and such. The school was not much help either. He was a child who fell through all the cracks. At one point the school told me they did not want to bother with him until he became a problem. He eventually became a problem and the school blamed the home life and told me we needed to deal with the problems. With my newly diagnosed disorders the online groups have given me information, hugs and acceptance. This acceptance has given me the strength to keep looking and keep asking. God has guided me to these sites, showed me I have a purpose and that I am important. My relationship with God has been the first time I have been surrounded with caring and loving support. He acknowledged my pain with abuse, dysfunction and He has taken me by the hand and walked me out of my intense anger. The anger only clouded my thinking not allowing for an opening for insight. I was angry no one believed my son had issues. I was angry no one believed the things that I was enduring at home. I was a blank wall to my world to be kicked, overlooked and only needed once in awhile. I think community starts with God who points your steps and before long you find a community or many communities to handle life. May God bless you and keep you make His face shine on you. Love Janet