Sunday, January 8, 2012

How We Got Here...Continued.

This is where things get complicated. Not just medically but in trying to write down how we got here. There are a lot of holes in my memory as this is one of the things that has been affected. Another reason for me starting this blog is for therapy. Not just emotional therapy but also physical therapy. I spent a great deal of time with my mind idle due to the inability to process information. I may end up jumping around some but I will try to stay on track as much as I can.

As most of you know we had a very hash winter. It was very cold and we had a ton of snow. This ended up being very hard on me physically. After Grandma died I ended up with a respiratory infection. This was followed by over a month of mouth sores and flu like symptoms. I just couldn't seem to fight off what ever was attacking my system. At the same time we learned that James' dad had become ill. His lungs were shutting down. We also found out that my sister did not have ALS nor did she have MS. After 2 months of doctors appointments they finally said that she might have Gunilla-barré syndrome. She believed that this was the case from the beginning. Unfortunately because they would not test her early they had lost the window of opportunity that would allow them to do so.

As we headed into February my body became weaker and weaker. My muscles hurt all the time, I was having terrible headaches, I was weak and I was always painfully cold. Usually I am the one that is hot and running fans while others are wrapped in blankets. My bones would ache like they were broken. I would not go outside unless I had to. Any light caused my eyes to burn and my head to ache. I was having more and more anxiety and was dealing with bouts of anger. I felt like I had the flu day after day after day. There was no relief. No matter what I took I had no relief.

During this time we had Abbie staying with us. Her mom and dad were in Ukraine bringing home their other two children. They were hoping for things to go quickly and that there time in Ukraine would be short. Instead they were there for two months. This was taking a toll on Abbie and while we loved having her we were not expecting my health to get so bad.

We were starting to see some relief form the crazy winter storms as we were entering spring break. I was looking forward to getting back on our feet. I was still feeling bad but I was determined to beat what ever was attacking me. I was still having to sleep a lot as I was still very weak and tired all the time. On the Sunday leading into Spring Break our youngest plugged our main toilet causing the back part of our house to flood with "poo water". I was laying down and James was gone. The kids called James and tried to fix it on their own to spare me the problem. Instead it only intensified. I snapped. James came home and basically grounded me to my room while he tried to clean it up. We ended up having to call insurance and we had to have all the flooring replaced. We were able to have the tile in the bathroom cleaned and the bedrooms were okay but the rest of the flooring in the house had to be replaced. Months later we would find out that they did not check Kayla's room closely and it damaged her flooring and furniture.

I do not remember when this happened but at some point I told my doctor that I could not live like this anymore. We have to do something because something was wrong. I ended up seeing my gyn and she believed that I was in the beginning stages of fibromyalgia. After talking to my doctor he referred me to a Rheumatologists. I was not able to get an appointment with him until March 2012. My PCP decided to start me on the medications for Fibromyalgia. Over time I started to see some improvement with the pain.

In the mean time I was having other symptoms that I was not telling people about. I would kind of talk about them in passing but friends would say "oh I forget my keys too" and things like that so I let it go. As time went on things were getting worse. My toes were painfully numb, I was having electric shocks that would go through my arms and legs, my balance was getting worse, I was getting lost and I was forgetting how to do daily task. I was dropping things all the time and I was starting to have spastic movements with my hands that would cause me to throw things when I would try to use my hands. I could not grasp things with my hands, could not use scissors and I was losing most of my fine motor skills. I was not able to tell where I was in relation to things around me so I would run into things and I could not pour the kids a cup of milk with out spilling it everywhere. I began to have blurred vision that made it impossible to read. The list literally goes on and on. My physician was growing more and more concerned and recommended that I see a Neurologist.

While waiting for that appointment I ended up seeing an Endocrinologist for the endocrine disease that I was diagnosed with while going through fertility treatment 10 years ago. As soon as she saw me and did the initial exam she said "you have B12 deficiency". This was the beginning of a very long road but was also the beginning to some answers we were praying for. She started labs and started me on high doses of B12. Our next step was to see the Neurologist.

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