May 24, 2016

Greetings My Friend, My neurologist appointment is in 3 weeks as I write, the long awaited appointment in which I hope to get a clearer understanding of what is going on in my body and how to cope with the changes is right around the corner. Last night I started making my list of things that I am struggling with so I can talk to the doctor about it. I found a few Chiari Malformation sites which did not seem to address my specific issues although I am finding out many of my problems are Chiari related. Next I learned I also have ataxia which I thought had no bearing on CM and now I am finding it is part of the struggle for some or even most CM patients. I am a CM patient who does not have a lot of head pain and my understanding is that pain is generally related to the CSF flow, the fluid in the brain. From time to time I will get the straining headaches, as I learn to keep my asthma under control and eat plenty of fiber I am able to function without the feeling of my brain being bounced around in my skull. Even though I am diligent I still have these headaches once in a while. For me my biggest struggles tend to be with my balance and gait. It seems the more my legs go off in their own direction the harder it is for me to walk. The harder it is for me to walk normally the more of a struggle it is to have energy and I am constantly fatigued. Now that I have worked through this latest set back I am able to turn around and reflect. I can see some symptoms over my life that pointed to this defect in me. The CM is a birth defect for me. I can also see where my neck and head has had some major injuries too. Junior and I think that my symptoms really came out when I had my accident a few years ago where I blacked out and rolled down a hill. To me it is at this point I see the major changes in my abilities and gait. The fatigue started showing up after I had cancer and I could not overcome it. I see it more on reflection that I understood at the time. It may be that the cancer also may have increased the progression I have been in for a few years too. For me the Ataxia site is helping me the most. I am able to relate to the struggles my new friends talk about. While I was reading this site recently I see that many patients' progress is slow at first, like every year or so. As time moves on the yearly changes begin to change to monthly changes and eventually daily. For me I learned rather quickly to use a cane then a walking stick. The stick allowed me to lean into it when I felt my balance was creating uncertain movements in me. I used the walker for long distances or the cart while shopping and that has allowed me to be fairly active with times I had to stop due to fatigue. More recently even these aids were tiring me to an extreme. I feared the wheelchair something awful and then one day I made the decision to use it when I am out or a scooter if one is available. It has allowed me to return to a decent amount of activity again. At this point I need a nap most afternoons and then I wake up and do some things. Yesterday I over did it. I baked bread, cleaned the air filters and bathrooms. After my nap I decopauged for 3 hours. At the end of the night my back had spasms. No matter how I sat I could not get it comfortable. Today I feel hung over. I know that I will move extra slow all day and more than likely I will need to sleep a lot. Even so I am grateful I was able to do all that I did. Instead of buying pots for the container garden we have going on our porch I decopauged some pots so it looks pretty. I made home made bread which Junior loves and I am grateful to be able to take the next day to slow down and regroup. We had bought some more plants and we did not have enough pots to put them in so it was important to me to get the pots ready to use. I am praying right now that I am entering a time where I am stable for a few years. I know I would not have been able to move through all these changes without my faith walk with Jesus. He has comforted me, strengthened me to endure and to move on. I have learned how to lean into the Lord and that is a huge comfort. I may never walk normally again and I don't think I will but I do know that God won't mind all the questions and fear. He will quiet me, comfort me and send me back into the struggle more confident. In the end that is what I want the most someone to see, to hear and to encourage me. May God bless you and keep you make His face shine on you. Love Janet