Clarity

Today is my day off and the sun is shining. Maybe that is the reason for some clarity. My kids are on a trip with their grandparents, so I awoke to a quiet house. This has given me time to sit and put some thoughts down.

Last Friday, I went for an EEG. That was the test to see how my brain is doing. The first one that was performed the day I was initially hospitalized showed a small bit of damage on the left side of the brain. The test from last Friday showed more damage to the brain on the left side from the last relapse. It is safe to assume that with every relapse, there will be more damage. This is a scary fact, but the one that we face. The obvious question is how to prevent a relapse.

The answer is that we really do not know. We know it is a relapsing and progressive disease, but we do not know much more. We are trying different things, but have no guarantees of what will happen. For those who know me best, you know that is the hardest part. People ask me all the time about how I am doing. This is the truth as I can best describe it:

I wake up each morning and get to raise two amazing children. I get to influence what they eat, wear, watch, and do while getting to protect and challenge. I get to run a house and decide what gets done, what we need, and even what is for dinner. I am blessed to be part of a Senior Center where I help make decisions about ways to grow and serve the members. But I can't make my hands quit shaking. I cannot prevent random muscle spasms. I can't promise I wont fall down walking across the room because my feet didn't get the message to move. I can't control my weight. I have little control over me!

I had an experience last Saturday that scared me and it has taken a week to digest. I started on my new medicine to combat the damage that has been done to my bones from the steroids. I didn't notice any changes in the way I felt, so I drove into town. While at the store by myself, I started to feel different. As I would look around, instead of a panoramic view at things, my brain was giving me choppy snap shots. This made me dizzy. My blood sugars were also dropping, which didn't make sense...as I had just eaten and taken my steroids. They should have been rising. I quickly headed to the check-out, grabbed a pastry and climbed in the car. I was able to eat, but the following minutes are foggy. My head cleared enough that I was able to drive home and climb into bed. I saw the doctor on Monday to discuss what was going on with the medicine. He said that I am probably getting a little anemic from the immune suppressants, but we are going to let my body try to rebound on its own over the next couple of weeks. The dizzy spells are from the bone replacement meds, but they are in my body for a month. We do not know if the symptoms will completely go away or if I will experience the same symptoms every month.

The bottom line is that I have tried to keep my schedule and activities the same because that is all I have control over in my life. Those are the things that make me feel normal. The truth is that we do not know if this medicine will work, but there are choices I can make to help it along. I need to look at the areas I can back out and the things I can let go of for now. This isn't easy for me, so I ask for your prayers, patience, and understanding.