Wednesday, November 2, 2011
I have prayed about sharing the details of my own diagnoses and treatment with everyone in this forum. There are all kinds of privacy regulations that rightly try to protect our personal medical information. This blog flies in the face of the very good reasons behind those policies. I have not shared our journey this far without considering the risks of being so vulnerable with my daughter's information, our family struggles emotionally, spiritually and financially and now my own life altering health issues. When Danica's little head became crooked and months later was diagnosed with Chiari, a condition I had never even heard of before, it was the internet that connected me to research but most importantly people who had walked in similar places and were willing to help me fight for my daughter. Since I began documenting here so many have googled "Chiari" or "Atlas Assimilation" and through the wonders of search engines and God's providence they have landed here. If you have survived something like this you realize how unique each story is and how much it matters if only to the one next person who can be helped or given some hope.
Many of you have written asking in almost disbelief about my surgery. It is amazing to think I will be having a suboccipital brain decompression, reduction of basilar invagination and cranio cervical fusion in less than three weeks. I wish I could explain all the diagnoses I received, but I cannot really. I joke I could practically be a neurosurgeon at this point, but the truth is the combination of conditions I have is a messy melting pot spelling eventual disaster. For some reason only known to God my symptoms have snowballed the past months into some very scary times. Thankfully, I had all this knowledge from Danica's diagnoses and treatment and a lot of gut instinct and my friend, Pam, a woman who has a road right next to mine who kept whispering to me to find help.
The emotions of our family now and the raw reality of what we are racing into is for another time and post. I have not fully let myself go there quite yet, because I am laying here in bed with calendars and paperwork and lists and trying to take care of details that no one else can or would even know to. In the back of my mind I worry I don't have advance directives and a living will and wonder how anyone would know what song I want at my funeral if I don't tell them.
As I type this my shoulder pops in and out of joint. I feel so much pressure from the back of my skull into my head I want it to explode just to stop the pain for a minute. If I move my neck the bones literally make a crunching sound. This is all stemming from Ehlers-Danlos Syndrome, a genetic connective tissue disorder. For over ten years I have been told I had severe fibromyalgia. In my heart I always knew something else was wrong. It was not just widespread pain in flares. It was like my body was imploding some days. I would tell Dan over and over, "There is something REALLY wrong with me." EDS relates to almost all my other issues because our connective tissue holds EVERYTHING in place. When it's loosey goosey things get dicey especially around your brain and spinal cord.
This is a picture of my cervical spine in a lateral position. Looks pretty good right? The C1 is covering the C2 55mm.
Dan recycled the Team Danica shirt my friend, Kim, had made last summer to get a little laugh out of me. Thank you for sticking with us and praying to the God who is able to do exceeding, abundantly above all we could ask or think.
Posted by Monica Kaye at 9:25 AM