Once again, devastation has touched my family. Maybe that is a bit melodramatic. However, I am still a bit shaken. This time it is me. So melodramatic or not, I guess you can just get over it, and just get on with it. After all, this is my blog and I am just trying to process all of this as it is happening to me.
I am not a stranger to trauma, nor devastation. Yet each time it takes me to my knees.
I have decided to start a new blog after receiving life changing news Friday. This is the
ending of beginning of a new chapter in my life. Once again, I am being told that I will have to alter my dreams and goals. Once again life will have to change. Maybe not by much, and probably only in minute ways. Only right now, all I can seem to focus on is the change. Alas, after four years, I finally have a name to the destructive and withering chronic illness that has been plaguing me.
Friday, I was diagnosed with a life disrupting brain deformity, called Chiari I Malformation (CIM). This diagnosis explains nearly ALL of my symptoms. And I have developed seven, legal pad sized, pages of symptoms since April of 2010. Not to mention the symptoms I have had since before I can remember anything outside thought itself.
My second MRI showed a 6-7mm cerebellar tonsillar ectopia. Meaning that my bottom part of my cerebellum, where the tonsils are (funny thing is I keep telling everyone “sinuses”, because I can’t even remember all the right terminology) is herniated. And the hernia is causing the tonsils to fall out of my brain between two plates in the skull of my head. Cool right? *Insert copious amounts of sarcasm*
So when my symptoms first started in 2010 I went to the doctor and was poked and prodded, and a battery of generic tests were ran on on me. When everything came back normal I was sent to every type specialist, who all basically agreed, after not much more than talking to me, that it was all in my head. After all, I did have two special needs kids, and my husband is in the Army, often away serving his country. So it must be stress. *insert rolling eyes*
I went through this process every six to eight months, because even though we were finally stationed in the same place for an extended period of time, my Primary Care Manager still changed every few months. Each one of them wanted to
annoy the ever loving daylights out of me verify my health for themselves.
With still no answers, I moved to Indiana early last year as my husband prepared for abandoning me an overseas assignment. I was fortunate to receive care from a young, fourth year, medical student, who has refused to give up on my health. He does not agree with my hippie-go-lucky approach to dirty earth potions alternative medicine. However, he cares for me as a patient, and he hasn’t given up on me. He diagnosed me with Severe Fibromialgia, whatever that is worth. He is convinced I have SLE, but my ANA results aren’t quite high enough for an official diagnosis. He has discovered that I have arsenic poisoning, mercury poisoning, low calcium levels in my body, resulting in bone density issues (I broke my rib gardening this year, impressive right?). He also has discovered that I have mold spores in my lungs and blood stream. Yet with all that, it still did not explain the majority of my symptoms. Finally, the search is over.
Or so I hope. I have held my breath so many times before that I hate to even imagine that I might actually have an answer. Finally I might actually have some peace. There is, at least, some peace in knowing what it is.
Granted I will have to change my life even further, and it would explain why I can’t even seem to handle the simple exercises like yoga or swimming. But I am a winner and a survivor, I will find a way. Nothing has stopped me in this life yet. This wont be the thing that takes me down. At least not today.
However, one change that my husband and I have been wresting with lately, that we made the plunge with last night; we are throwing out all medicine from our cabinets and investing the rest of the way in our holistic stock. I am more stocked in essential oils, and herbs and spices than anyone I know. But after this, I am going further. I am done with Big Pharma, and I do not plan to put anymore poisons in my body any longer. Call me whacky, and many do. But I have too much at stake. I have nothing against doctors as a whole, but there is less and less room for them in our lives. I think home remedies have more of a role than the average person gives it credit, and Doctors have their role. I have been too afraid to let the role the doctors have played in my life, take a back seat position. However, now is the time. I am ready.