Work, Work, Work!! Sound familiar? Sometimes it seems that is all I do, no time for fun, no time for doing the things I long to do. So I have decided to put on the brakes and "re-season" my life with all the things I miss, all the things I wish I was doing and all the things I know are good for me. This blog will be my journey towards achieving that goal in the midst of a personal health crisis.
First let me introduce myself.
My name is Cat and I am 53 years old. I have lived an "extraordinary" life, and although I have accomplished more things than most in some ways, I am not what most would call an accomplished woman. I am not an extrovert, but I am not exactly an introvert either, I would call myself a sort of "balancing act" somewhere in between flipping from one side to the other according to what situation I am currently in. I have an enormous library of common sense drawn upon from a life long series of life's lessons, many heartbreaks and lots of wrong decisions in my personal experiences which have brought me to this very minute in time.
I consider myself an herbalist, I love herb and vegetable gardening, gourmet cooking and creating. I have a passion for blending my own herbal teas and making my own herbal infusions.
I love writing stories and poetry, have written several books that I have never even tried to publish(the introverted part of me too chicken to try). I have a very passionate nature, a big heart, and an enormous love for nature, fishing, camping and the great outdoors.
I used to be a professional singer, and sang as a regular in several of the country music shows in and around the Ozarks area of Missouri and Arkansas many years back.
I am the mother of three children, two sons, one daughter, and the grandmother of two beautiful granddaughters.
I am currently precariously married to my 4th husband, I say precariously, because although he can be a very affectionate man, my husband suffers from Narcissist Personality Disorder. Kind of a Dr Jekyll and Mr Hyde personality. I never know from one day to the next whether he will be the wonderful man I married or have a NPD episode and be the selfish asshole he can be in one instant, and then the guy every girl dreams of the next. He is definitely not a very easy person to live with. But because he is now aware of his disorder and I because am very patient, so far we have worked through most of his quirks and have been married now for almost 6 years. My previous 3 marriages have been a maraud of mismatches, and yes as you can guess they did not go so well, details of all I am sure will be revealed at a later time.
I have led a life with lots of love growing up, and a very good childhood. My parents taught me well and I have two older brothers and an older sister.
I lost my little brother in a car accident 20 years ago when he was on his way home from work at sunset, he had just turned the corner towards home and had to swerve to miss a teenage kid who had popped up on the road on a three wheeler just in front of him. The sun was in his eyes, he saw the bridge rail, but chose to hit it rather than the kid, the car flipped over the rail into the creek below.where he died moments later. He was not even 4 miles from home.
I have also lost both of my parents to illness's within 6 months of each other, my mother died of the intestinal scarring effects of radiation therapy she had over 30 years ago. Her intestines could no longer support her nutrition anymore and she literally starved to death before our very eyes.
Six months after her death my father gave up fighting his "continuous state of pneumonia". He said he saw no reason to keep fighting his inevitable death with Mom gone, he was tired of fighting the emphysema that he had fought for over 20 years. With all of us begging him not to do it, he signed a letter of release at the hospital and filed a "comfort measures only" form and died within just a few hours of them cutting off his meds. He died of congestive heart failure literally drowning in his own fluids.
I miss them all so terribly, and almost everyday something happens in my life, or I see something familiar that reminds me how close they still are to me. My brother in that we were very close, and so many things I see and do remind me of him, and my parents in that they taught me well how to be creative, to live off the land, and survive on my own. The loss of my parents have taught me much about the shortness of our time here on earth, my own health condition is pushing towards something I haven't quite got a handle on yet, but I plan to take each day as it comes and keep my chin up like my Mom and Dad always taught me. I am an optimist, and rarely sit around feeling sorry for myself, so no tears for this girl to shed over the hurdles I will have to cross over in days and weeks and to come.
I am now at a crossroads in my life where my current health condition has given me a wake up call. Time flies so to speak, and here it is 2014, and I am not getting any younger. I have been suffering with what I thought was merely arthritis for most of my life, and although I am very rarely sick (colds, flu etc..)in February my pain level had increased tenfold and it was going beyond what a normal aspirin could make feel better. So I found a good doctor and he set me up for a complete blood workup and several X-rays and an MRI series. The blood work revealed record breaking stats, my doctor told me that all my blood work tests came back above the average perfect, that my real problems were structural damages. That is when they found the Chiari Malformation and my whole world suddenly took a new direction. When I went for my follow up with a neurosurgeon the doctor explained that Arnold Chiari Malformation "in a nutshell" is usually not fatal and is a condition where your brain is too big for your skull. "Usually not fatal?" Well I don't know what planet you were born on but this here gal thinks that being diagnosed with something that may or may not kill you is a bit staggering at first. He then told me that it is a common condition and is usually not fatal, and it is nothing to worry about until it becomes symptomatic.
I said "like the symptoms I am having right now?" He was silent for a minute.. then he said "yes, I would say that your symptoms could possibly be chiari related". So he ordered more MRI's and I am currently waiting for the results of those three MRI tests. One to study my brain, one to see if there are any other abnormalities of my spine farther down, and also a cerebral fluid flow study (CINE MRI) to see if my spinal fluid is flowing freely at the base of my skull.
I have done a lot of reading and research on my condition, and I have learned a lot. Had I not read up on it the doctor planned to just send me to physical therapy and give me some pain pills.. because he treated the condition the way most doctors are taught to think of it. Its "usually not fatal" right... Tell that to Georgina Weavers mother who lost her daughter to the very same condition that is in my head, because the doctor knew about her chiari and didn't think anything of the fact that she had the condition. He sent her home and told her to simply keep taking pain pills and increasing her caffeine intake. Georgina was only 19 years old read her heartbreaking story here:
How Georgina died
The following picture is the first MRI where they "noticed" my chiari.
You can see the crowding at the foremen magnum (spinal canal opening) where my spinal cord goes down into my spine. Those tonsils are not supposed to be down that low. This is the dangerous part of the condition. If the tonsils crush the brain stem you die!! The really scary part of all this is that so many doctors do not treat people that have this condition, because up until recently it has been considered a genetic condition and nothing to worry about. So patients are "left in the dark" about whether they have one or not. One in every three hundred people have this condition and most do not even know it unless it is noticed on an MRI by a well trained radiologist. Chiari Malformation is a common condition, with common symptoms that are misdiagnosed as something else by doctors everyday due to the lack of knowledge about this condition. I read the comment of two doctors that complained that the information about Chiari malformation in medical books in medical school consists of just one short paragraph. The sad part is that everyday thousands of people are dying from this condition and their deaths could have been prevented with the right knowledge of how to treat it. I advise everybody I know that if they have ever had an MRI of their heads that they should look for themselves and see if they have one that has went unnoticed by their doctor. Remember this condition is usually ignored as a common everyday thing. Only a chiari aware doctor will recognize the symptoms and put two and two together. Do your own research and look out for your own well being.
After doing some research into this condition and its possible long or short term prognosis, the thought of my own possible sudden death has opened my eyes to the fact that there is still a lot of things I want to do before I am pushing up the daisies in our family plot.
The neurosurgeon says my condition and symptoms are complex. I have a combination of severe headaches, vision disturbances, numbness, tingling, nausea, restless leg syndrome, carpel tunnel in both wrists and feet, severe dizziness, vertigo and extreme fatigue. This on top of the pain of degenerating disk disease that is mainly in my neck. So there are days when I can barely hold my head up, barely walk, barely sit, barely stand, and even hard to sleep because I can't find a comfortable position.
Yes I am a mess... so how am I going to live through all of this and still fulfill my dreams of accomplishing my "other" life's goals?
One day at a time with a very high pain tolerance!! so I may not write here everyday.. but I will write when I can. I appreciate any positive comments from any and all who want to read along with my quest.
I want to make everyone aware of what chiari malformation is and if it helps to save a life then that is a very good thing..
For more information on Chiari Malformation the Mayfield Clinic has some helpful information
http://mayfieldchiaricenter.com/chiari_overview.php
Good Day to all!!
