While I will see a neurologist at a later date to get a confirmation, the Orthopedic surgeon I saw today claimed that I was a nearly perfect case study example of the disease based on all of my symptoms and the structure of my feet. Basically, the communication between the nerves in my brain and the nerves in my legs (it starts with the legs then progresses, usually to the hands but mine has evidently progressed to my spine) isn't working right and it's causing some of the muscles to take over and become strong while others atrophy (lose strength). This creates unbalanced muscles which creates a series of other problems relating to pain.
Finally - an answer. But it's a harsh one. There is no cure. It's progressive. It's degenerative. All I can do is treat the symptoms: physical and occupational therapy, foot braces, orthotics, and pain medication. But the disease will only get worse. As in, like, people with CMT eventually can't fasten buttons or write. Walking becomes difficult. The end of the summary on my pamphlet reads "Although there is no cure for Charcot-Marie-Tooth disease, there are many treatment options and assistive devices to help people manage physical challenges and lead fulfilling lives." Yikes. That's not something you say to someone with a minor ailment.
One of the final paragraphs reads "Charcot-Marie-Tooth disease progresses slowly over time. Symptoms may worsen, even with proper treatment and the patient's best efforts. Although many people have emotional assistance from family and friends, support groups are available to help people with CMT and their families cope with the progressive nature of the disorder." Whoa.
But there is good news.
By remaining steadfast in the Lord, I'm given great joy. It is by grace through faith (Ephesians 2:8) that I am saved, and in being saved I will be granted resurrection - permanent life in a new body in heaven.
1 Corinthians 15:42-44
"So will it be with the resurrection of the dead. The body that is sown is perishable, it is raised imperishable; it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power; it is sown a natural body, it is raised a spiritual body."That is exciting for sure. But my excitement isn't limited to the foretold afterlife. It's for now. God is here, and He is living through me. That is freakin' awesome.
And when things get rough, I refer to Job. In Job we see that God's plan is not to be doubted. He is all good. And He has a plan for us. If we submit to this plan, to His Will, we will live a fulfilling life. He will take care of the rest - all we have to do is submit. It's the secret sauce, yo.
I recently learned to recognize a star cluster in the sky known as the Pleiades, or the Seven Sisters. It's my favorite grouping of stars in the sky and it will remain a tightly bound star cluster for the next 250 million years. It's part of the constellation known as Taurus, which resides next to my favorite constellation: Orion. Named after Orion the Hunter (greek mythology), Orion is a gorgeous, highly visible and fairly large constellation. Betelgeuse is an orange-tinted star that makes up Orion's left (from our point of view) shoulder, and the diameter of Betelgeuse is 700 times that of our sun. We are small. And weak. But God is strong. He reminds us of this in Job. In an epic rant re-informing Job of His glory, God states:
Job 38:31
"Can you bind the chains of the Pleiades? Can you loosen Orion's belt?"God is challenging Job here. He's saying that He can control the stars, and reminding Job that he can't. God is all powerful and all good. All we have to do is submit to His will. I can at least do that.
The Pleiades:
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