October 8, 2016

Greetings My Friend, I just wandered out the front door to take Daisy out to the yard. The porch is closed in, we now have a gate to keep most of the dogs on the porch and they have the backyard to roam. I soon realized that my days of wandering onto the porch without the walker are about over. I felt myself start to fall backwards. Junior had gone to the Chiropractor so I was home alone, it is chilly in the mornings and colder still with my nightgown on and I realized I could have truly fallen and been out there for a long time. I am getting very tired walking around the house without the walker these days so I need to use it. I wobbled more when we visited Debbie and Boogie the other day too. I tell myself this will go away and I know it won't next I tell myself that by not using the walker when Vanderbilt Hospital calls to do diagnostic testing in order to find out what is wrong with me I will be able to display my gait issues better. The fact is I need to use the walker and I am avoiding it. I have not been using the recumbent bike lately and I wonder if I began using it if I would be able to walk better. We have run a lot the past 2 weeks again and I am tired so for now I have put it off, I have things I want to catch up on as well. Facing this latest decline is not as fearful as the one I went through last year, I do find I am deluding myself in thinking it will be a little longer before I truly will decline. With this I am fighting to stay on top of my allergies and asthma. I am hoping to make a year and longer with no bronchitis. I am going on 11 months right now and the ragweed season is playing havoc with my goal. The joys of deciding which chronic problem to work on. I want to get on line and seek some sort of comfort from one of the groups I am involved with and I am not because I do not know where I belong. First I was told I have Chiari Malformation and I joined a group. The more I read, interacted the more I saw that my symptoms were not what most of the other people deal with. I have some of the problems the straining headaches for instance but I do not have the pressure in my head headaches that most of the others deal with. Next I was told I have ataxia and I relate to many of these symptoms too but not all and then I hear that this is not my problem. The one diagnosis I relate to the most is Myasthenis Gravis but I have been told that I do not have this disorder either. The good thing with all the groups is I have learned a few things to help me be proactive. Then there is that too, I choose to be in a wheelchair when I am out because I tire so easily walking and because I also have osteoprosis which means my bones are brittle and can break easily. I was talking to a woman recently who has hip problems and once more I heard how she is able to keep up with groups she is involved in and gets around even though she too tires out. People want to know if I can walk and then when I tell them I do walk at home I get either looks or comments. It is like they believe I am being a little too dramatic. I am starting to understand some of the comments from the groups about "it is my journey and don't judge me" attitudes. My doctor is real happy with my decisions so I am attempting to not to take to heart what others think. Add to this I often ask God if I am on track with how I am handling my situation. Junior was very supportive of my need for a wheelchair when I am out. At the end of the day I am the one with the struggle and with God's guidance I am attempting to live as fully as I am able and that is all I can do. May God bless you and keep you make His face shine on you. Love Janet