I am officially "disabled"

According to the social security office, I am officially "disabled". This is very much a blessing and I am relieved. However, this is a bitter-sweat pill to swallow. I worked EXTREMELY hard to get through nursing school. Now, I know that it was not normal to have headaches everyday of your life and to have chronic fatigue (or whatever you may call it). So, it was very amazing that I made it through nursing school, working, and raising children and as the nursing student body president.

In October of 2009, I was in a car accident. I did not realize it at the time but that accident changed my life forever! Whiplash and spinal cord damage, would show up later. It was also the trauma that initiated the problems with my Chiari. I immitiatly had problems swallowing, bowel problems, bladder problems (initiating flow and going up to 14 times a day), low back pain, etc. I went to doctors for all of the symptoms and was sent to seperate specialists for each seperate issue. The headaches worsened and increased in frequency.

Then on April 29th 2010, I was hospitalized for fever, headache, sudden onset of stutter, balance problems, and right-sided weakness. I thought I was having a stroke. They did a spinal tap in the ER on an already dehydrated patient. After 2 days and positive Babinski (not a good sign), I asked for a neuro consult. We also asked the nurse to print out the signs and symptoms of Chiari. She did so and I had all of the 47 symptoms except 3. On the third, fourth and fifth day, I ask to be transfered to Barrows. I was told that I was not "acute" enough. After 5 days, I was sent home with paperwork on headaches and no hope. After being sent home, I worsened and got the remainder of the symptoms, including not being able to walk unassisted. A month later, I picked up my medical records. Imagine my surprise when I discovered that one of my MRI's showed "low-lying cerebellar tonsils". I was forced to fight an uphill battle with no assistance from the medical community in Arizona. I was told "your mind is a powerful thing" and "you have none of the symptoms". So no one would treat my pain. It was a VERY dark and painful time.

I took my medical records and mailed them to The Chiari Institute. Thank goodness I had my sister, who also has Chiari, to help me with the paperwork and to direct me. I was accepted and was able to get diagnosed and have surgery. It seemed like an eternity but was a much shorter time then most people wait. Even when I returened to my primary care physician with diagnosis of tethered cord, ehlers-danlos syndrome, and Chiari, he still treated me awful. I think he may have just been overwhelmed by me. I finally was able to get a new primary care provider. She is wonderful and works with me. What a world of difference a provider can make!

In November of 2010 I had my tethered cord released and am doing much better. However, there is no cure for Chiari. There are only surgeries for symptom control at this time. So far, there are four members of my family affected by the surrounding illnesses of Chiari. It is debilitating and painful. I am glad that I was approved the first time for disability and I did not have to get an attorney. My family feels very blessed. Thanks to everyone that has been so supportive!