I want to share my story...it's inspired many people (and many of my patients). Lupus hasn't been the only medical malady in my life. I've overcome a lot to get to where I am today. In order to understand me, you need to know this story. I hope that it brings some inspiration to you all to brighten your day and outlook:
(from 2004...and two posts long so it will all fit)
My name is Carrie. I'm 25 years old, and I'm an AVM survivor. Seven years ago, I remember literally falling onto this path. An average 18-year old, I was enjoying my last year of high school and looking forward to college. I was sitting in the school cafeteria when I remember this wave of nausea come over me. I stood up to go to the bathroom, and the next thing I saw were people standing over me. I heard them saying something about a seizure as they wiped the blood from my face. I was scared, confused, and rather mortified that the ambulance was there to cart me out of the cafeteria with the whole school watching me. That was the first of many "hiccups," as they came to be called. Every episode was followed by the usual trip to the hospital, tons of CT scans, and EEG tracings. They didn't know WHY I was having seizures, so I was diagnosed as having pseudo-seizures.
I went off to college, where the drama continued. I was put on Dilantin to try and curtail my episodes, and it worked...for a while. I remember waking up one morning and having this terrible itching on the bottoms of my feet and the palms of my hands. I went to the drug store and got some anti-itch cream, figuring the clay I was working with in art class was drying my skin out. Later that day, my English teacher called me up to her desk and said, "Carrie...are you using a new makeup?" When I told her I wasn't, she asked me to go to the restroom and look at my face. It was the color of an eggplant. Next thing I knew, I was in the hospital having a full-blown reaction to the Dilantin. I stayed there while my skin blistered and peeled off...from the inside of my mouth to the tips of my toes. Once I was ready to go back, they tried putting me on Depakote. Again, more seizures.
I moved back home to live with my parents and started going to a college closer to home. The seizures got worse, my hospital stays got longer, and there were still no answers. My ongoing illness forced me out of school. I started to work full-time, and was happy to notice a decline in frequency of my episodes.
In December of 1998, shortly after Christmas, my alarm clock went off...in more ways than one. My mother came into my room to see why I wasn't awake. All I remember at that point was a headache so violent that it made me cry. I couldn't see, I couldn't move...all I wanted to do was vomit. The next few days were black. I only know the goings-on as they were described by my parents. My mother couldn't get me out of bed, so she called our general practitioner, who diagnosed me over the phone as having "a migraine and the flu." When I didn't get better, they took me to a therapist who was convinced that I was faking it. He gave me some medicine and said, "THIS should snap her out of it." I didn't budge. At this point, my right eye had slid over to the side so that it was looking at my nose. My parents took me to a neuro-opthalamologist, who opted to do an ultrasound of my eye. This is where I start to remember things...
He looked at my father and I and said, "She's had an aneurysm rupture." My mind went cold. My father looked ashen. The doctor said, "we need to get her to the hospital for surgery right away." So, off we went to the hospital. A contrast-enhanced CT scan showed that it wasn't an aneurysm, but an arteriovenous malformation. Still, the truth that it had ruptured remained the same. The bleed was in my right frontal lobe, and the pressure of it was what was causing my eye to go every which way but the correct way. After consulting with a neurosurgeon, we were told that general surgery was not an option. The location of my AVM was too deep, and there was nothing that could be done. The only option was a radiation surgery that would hopefully cauterize the vessels and prevent another rupture. I'd have to wait until April for the clot to dissolve.
So, I went home with an eye patch and pain medication. I was told by my doctor that there was a 5% chance of me coming out of the surgery alive. If I did, I'd be either blind, severely retarded, or vegetative. I didn't pass this information to my parents. The clock started ticking, and all I could do was wait.