March 17 2016

March 17 2016 Greetings My Friend I have known since we moved to this property that we have ginseng growing wild on it. We have been told several times. The strange thing is each time I heard the word ginseng I pictured ginger root. I am learning that my memory is not what it used to be. Monday we took Daisy to the groomer and we showed up an hour early. When I looked at the calendar I see the time to have her there was indeed an hour later. Ataxia memory struggles. Today while reading a status update from an ataxia help site I saw a problem, which of course is one I deal with. The problem is missing my mouth and dropping food on my shirt. It was a relief to see I am not alone. I am grateful Junior does not mind removing the various stains I pick up on my clothes these days still it is annoying. Next there are the “friends” who point out that you need to “just get over it, you don’t need to sleep that much and so on.” The other extreme I struggle with is those that are handicapped and feel since they can push themselves they believe I should push myself not accepting our differences is a huge problem. Our struggle is real, it is always with us. Some days are better than other days so we may have more energy or coordination and then there are days we can hardly pull ourselves out of bed. To be honest it has taken me a long time to understand that there is no getting better and staying better. I have finally given myself permission to do what I need which means sometimes I can not keep an appointment. I am not faking it so I don’t have to go. Underneath it all, I wish I could go and do. Picking up winter debris out of the yard day lasted maybe 15 minutes. I was extremely tired when I finished. I had a long afternoon nap and I am itching to go out and work on the porch. I am forcing myself to stay in and concentrate on working from my chair. I have learned that the extra push is going to hurt me tomorrow. I know if I stay quiet this evening I will have energy tomorrow, maybe even an extra few minutes, maybe not. I have learned much about my struggle and have not yet been to a specialist that deals with my disorder. I strongly desire to be able to work with a specialist. After years of searching I have an appointment in June which of course is not coming fast enough. My PCP has been very good with trying to help me deal with my problem. Recently I noticed we both were avoiding the neurosurgeon I had been to previously. She seemed surprised when I told her the neurosurgeon never told me I had ataxia and said my CM was not going to progress further. At times I feel like my disorder is progressing rather quickly and other times not so much. I have known about Chiari Malformation for 6 years now and I have gone done some more online research. I developed hand tremors, now I am taking medication to calm that down. At first I used a cane until I discovered a walking stick gives me something to lean into when I have an area I need more support walking in. I use a walker or a cart if I go any distance because I tire out. I have learned climbing a ladder is not a good idea. The scariest thing for me is I don’t have an idea of how quickly I will move into each phase in my disability. I understand the doctor will not know precisely, my hope is as a team we will stay on top of each turn in the road together. May God bless you and keep you make His face shine on you. Love Janet