April 2 2016

April 2 2016 Greetings My Friend I am learning more about when I can walk and when I need to stop and use the wheelchair. Last week was hectic with a trip to the ER for Junior’s thumb, my ability to walk declined to the extent I need to use the wheelchair and then a trip to the PCP to have Junior’s thumb looked at and I had an x-ray. Add to this we too are almost finished with the kitchen. The disorder of renovating has settled quite a bit so the kitchen is ready to be set up like we want to use it for the most part. We cleaned and arranged until it was just right and then we had Debbie and Boogie over for dinner to show off our kitchen. I learned last week to walk the wheelchair when I could and to steer the wheelchair while I sat in it. I pushed myself to walk behind the chair more than sit in it. It wore me out when I walked. For the past 2 days I have sat and napped a lot due to the crazy schedule of the week. I find that I am walking steadier around the house and even taking off without the chair. I went to get breakfast this morning, make tea and take the tea to my recliner. I could feel the drain on my being. My foot tried to turn the wrong way so I know that I am not healed by any stretch of the imagination. I know that I will use the scooter at a store and not try to walk on my own with a cart. I tried pushing myself at a store over the weekend to find that my shoulders were not strong enough to go for an extended amount of time. My resolve now is to use the chair in equal or even more to my walking. I also know that I need to call my PCP to have a conversation with her too. My left hip and right knee want to give out on me. My foot wants to turn over to the side and my lower back aches. I wish I was with a neurosurgeon who is experienced with Chiari and ataxia because it seems like I am declining rather quickly right now. It seems like my fear has left and in its place I find a determination to find a way to do fairly much all the things I have been doing. I can still stand up and get things so it helps me. I feel as though I am being introduced to a wheelchair so I learn how to do things in it. Later when I can’t get up I will know it better. I am also wondering if I will always be able to stand up and get what I need, time will tell that is for sure. I also can still carry Daisy around. I let her sit in the chair if I am pushing it. If I am sitting the chair I hold her in my lap as I wheel around. Her nearness brings me comfort and strength. I sense that I am in a mode of using the wheelchair and getting around on my own steam. I see this much as I did when I had to use the walker full time and then my PCP and I talked, she revamped some of my medications and I was able to let go of the walker for the most part. I see that I may be wheelchair bound for now but I will regain enough strength to walk with the walker more and need the wheelchair for the longer periods of time I would have been able to walk on my own. I am grateful for the journey of learning to use the wheelchair as opposed to walking on my own one day and then never walking again. The slow introduction helps me accept the possible full time dependence. May God bless you and keep you make His face shine on you. Love Janet