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    Smile I'm Glad God Had So Much Faith In Me

    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.
    Blessings,
    Carrie


    "I feel like I'm diagonally parked in a parallel universe."

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    On April 30th, 1999, we drove to the hospital in the early morning hours. I had cut my hair very short so that my halo would go on easier. I had lost nearly twenty pounds in the ordeal, and was still very weak. After checking in, I was prepped for my halo. I still remember just sitting there as the doctors screwed that huge hunk of metal into my skull. I tried walking with it on, but the weight of the halo and my already weakened condition made it impossible to stay upright. I had all my scans taken with the halo bolted to the table, and waited the seemingly endless five hours until the team could map out the course of the radiation. We sat in my room sticking Post-Its to my halo and trying to avoid the reality of what was about to happen. After the course was plotted, I was taking into the treatment room and re-measured. Somehow, my halo had shifted in my skull just a hair...so they took it out and put it back on. The pain was so intense, all I could do was cry as I sat and waited to go back to the treatment room. I chalked most of my tears up to the pain, but I was petrified. Was this the last time my parents were going to see me? Would I ever see them? Would I ever walk, talk, run, dance, or do anything normal EVER again?

    I was wheeled back into the treatment room, bolted back down, and the treatment started. I looked up at the giant arm rotating around my head and said, "God...if I get through this...this is what I'll do with the rest of my life." I listened to the hum of the machine as I drifted off to sleep.

    I was awakened by a female voice. The treatment was over...I could go. My vital signs were normal, I could see, I could walk, I could talk, I could hear. My halo was removed and I was sent home.

    The next night, I saw at home nursing my halo holes and talking on the phone with my boyfriend. According to him, as I talked, my speech started to slur. The words came less frequently, and then there was nothing. He frantically called my father on his cell phone downstairs. My father ran upstairs to find me hanging out of the bed with the phone in my hand...not breathing. My family called 911 as my father started CPR. The EMT's came and rushed me to the hospital. The doctors told my family to call whoever needed to be called...that I wasn't going to make it. I remember opening my eyes in the trauma bay, looking up at the doctors, and saying, "where am I?" Their eyes got wide as they asked me who I was, what year it was, and all the other questions they ask people in that situation. I was awake. I was fine. After a short stay in the hospital, I went back home.

    My seizures were still frequent and intense. My right optic nerve had been damaged during the rupture, and my right pupil remains to this day larger than the left. All I wanted to do was lay in the bed. I saw myself as a lost cause. I couldn't walk very far, I was weak, every time I went somewhere, I'd have another episode. My mother forced me out of bed, amidst great protest, and made me do small tasks that would normally be easy for a 20-year old. One day, we'd walk to the bathroom. Then, I'd write a letter. Eventually, we moved up to walking to the mailbox. I was still furious and confused as to why or how this could have happened to me. I was a normal kid. I was in a sorority. I had a great CD collection. I had a wonderful boyfriend. WHY did God choose ME to have to deal with this? I remember my grandma telling me, "God will not give you more than He knows you can bear." Small comfort for someone who has had their life turned upside-down in a matter of a few short seconds.

    Time passed, and I started to regain the life I was convinced I had lost forever. I was able to drive for short distances, and started to work at the local veterinarian's office about a mile from my home. I was still plagued by seizures...having some at home, having some at work. I took it as a personal challenge to make myself well again. I remembered what I had said on the table in the treatment room the day of my surgery, and started researching careers in radiology. I started college again, this time with the intent to become a radiologic technologist. The seizures continued. My mother ended up having to drive me to school every day, but I kept going. I transferred to Grady Memorial Hospital after two semesters and continued in their radiology program there. My seizures kept throwing me backwards in my studies, but I kept going. The instructors were concerned that the stress of school was contributing to my regular ER visits, and suggested that I drop out. I politely informed them that the only way I was leaving that school was in a body bag.

    This past September, I graduated with Honors from college...seven years after I had originally started out as a graphic arts major. I had to stay past graduation and make up all the countless hours I'd missed as a result of my seizures, but I stayed and did it. I took my registry in October, and am now a registered radiologic technologist. It amazes me every day just how lucky I truly am. I have yet to meet someone who has known someone with an AVM rupture that has not died. I'm known as the "Walking Miracle." My patients with aneurysms, brain tumors, and other neurologic disease find comfort in the fact that the odds were against me, and I'm standing strong today. I'm employed in one of the top 100 hospitals in the nation, and find happiness in my career that I never found before.

    So...this is me. I'm Carrie. I'm an AVM survivor. I only have partial sight in my right eye, I have a slight tremor, and still the occasional seizure. I am nothing like I used to be. I'm better. I'm not where I thought I'd be at 25. I never thought I could BE this good at 25. I don't dwell on memories of the days when I didn't know if I'd live to see the next sunrise. Instead, I count the days until I get married in September.

    It's like my grandma said..."God will not give you more than He knows you can bear."

    I'm glad He had so much faith in me.
    Blessings,
    Carrie


    "I feel like I'm diagonally parked in a parallel universe."

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    Oh Carrie,

    First of all CONGRATULATIONS on passing with honors WOW!!! You are AMAZING!! For such a young lady going through so much and still fighting, happy with a great job.You are an inspiration to us all. WELL DONE!! What a story and a life you have lead,the struggles the fight...you should be proud of yourself Carrie.So glad you came here and shared this wonderful story with us.Thank you.

    Love and gentle hugs
    Amanda.xxxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    HI Carrie...

    A woman to be admire....you are...and your courage. I am glad you are alive. I am honored that you have shared a big part, a life altering day with us..your triumph, your courage. Such a huge obstacle to live through. Bravo...tight hugs...

    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Carrie!
    Congrats on overcoming all that you endured! There is never a testimony without a test and you have shown that! Thank you for sharing your story and for being so courageous in the darkest time in your life! I know it wasn't easy but you can do all things through Christ!

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    Carrie;
    What an inspirational story and how much you have overcome! And, to pass with honors and working in a job where you offer not only help..but HOPE!!
    There was definitely a plan for you that you are, indeed, fulfilling!! Thank you for sharing your story with us and thank you for sharing yourself with other members here! You are to be admired!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    What an inspirational message! thank you for sharing with us!

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    Wow, Carrie! You go girl! Thanks for sharing your story with us. Very inspiring!

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    Carrie,

    Keep telling your inspirational testimony, keep encouraging others while you are obviously encouraging yourself. You have overcome what some would have curled up and sucum to. Amazing, truly amazing. I'm glad through all of your trials you found truimph and what seems to be your purpose.

    Thank you for sharing.

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