There has been progress on two fronts over the last couple of weeks. First I want to share the medical progress. Maybe I should find another word, as the condition that I have is progressive. I am writing to share that there have been positive changes.
Hashimoto Encephalopathy is rare, yet we do not seem to have a difficult time finding information about this disease. Unfortunately, finding accurate information is similar to finding a unicorn. I do not mean to burst bubbles! I am just pointing out the fact that few have seen one. This is true with my illness. As many of you know, my new neurologist treated 22 cases at the Mayo clinic. To put this into perspective, there are fewer cases published by the medical community in the US. As the Mayo Clinic attracts those who have not responded to treatments or have been told that there are not answers, nearly all of the cases my doctor treated were progressive.
Shortly after my hospitalization in October, my doctor informed me that we have done all we can to prevent the progression. Many people that I have run into comment on how much better I appear, therefore assume that I am healthier. Realistically, my condition has continued to progress, but I have been able to remove some medications and healed from their side effects. What has improved is our approach to the treatment.
When I was originally diagnosed 19 months ago, my immune system had attacked the neurons in the brain, which caused significant inflammation. The inflammation created difficulties for the nerves to communicate with my muscles and organs. High dose steroids and immune suppressants allowed my brain to heal, but I suffered stroke-like symptoms for a while. During that time, caffeine and stimulants helped. However, once the inflammation was gone, I was left with hyper sensitive nerves. Physical, emotional, and chemical stress would result in a relapse in convulsions, persistent tremors, and poor motor skills. I was taking medication for narcolepsy to fight the fatigue, but this aggravated the problems. It also made me higher than a kite.
"Why waste energy trying to stop the progression when we can treat the symptoms?" my doctor asked. I am now taking a sedative with my immune suppressants which has calmed the nerves, leaving me with very few symptoms. Relieving my body of the symptoms has given me some renewal, and that is sufficient for me. We had to increase the medication in November, but found that there is a fine line between calming the nerves and allowing me to drive, cook, and parent. I now feel better than I have since being diagnosed. I was encouraged to return to the gym to fight the fatigue. This is something that put stress on my body before and would cause a relapse. I have been back in the gym for almost a month now and I have yet to have a problem. I still fight fatigue, but I have been able to regain some of the strength that I had lost.
The other progress that I have made is on the spiritual side. Raised in a church, belief in God and his powers were never a problem. But as I have been studying about healing in the Bible, I had to redefine the word faith. Faith in Hebrews states that it is the belief that God can answer your prayer and trust that he will. I always believed that God could heal people. I have witnessed healing that doctors could never explain. My problem was with trusting that he would heal me. Early in my life, the identity I was given by the world was that I was not worthy of much. That is an identity I accepted and then lived into as I aged. I instinctively felt as though I was the exception to God's power. I also have been raised around the medical community where illness has patterns and science proves certain things are inevitable. If every case of progressive HE has ended the same way, I had trouble excepting that I would be the exception here as well.
Trust is something that we say has to be earned, but God has been unfailing and unchanging. That should be proof enough. So I wake up each morning and reject the muscle memory I have of accepting my fate and look to the Lord with Faith, hoping that is sufficient.
Matthew 21:21
Jesus answered, "I tell you the truth, if you have faith and do not doubt, you will be able to do what I did to this tree and even more. You will be able to say to this mountain, 'Go, fall into the sea.' And if you have faith, it will happen. If you believe, you will get anything you ask for in prayer."
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