I don't remember the drive to Jo'burg but it was before the highway was built so it took a good hour to get there. I remember endless tests and doctors looking very confused as all the tests came back negative! They would prick me with needles to assess where the paralysis was and how fast it was moving. The doctor would prick my foot and I couldn't feel it, then prick my ankle and I could feel that..then come back in a 1/2 hour and pick my ankle and I couldn't feel it and pick my calf and I could feel that. I was picked every 1/2 hour and my poor mom just helplessly watched the paralysis moving up. My mom was told to watch my chest move up and down as I breathe and if it stopped she had to call them. (surely there was a more humane way of monitoring that!!) It was longest night of her life!
The doctors had ventilators ready as they expected the paralysis to hit my lungs. I remember waking in the morning and feeling like someone was sitting on my chest. I was moved to ICU. By then the paralysis seemed to have run it's course, leaving me completely paralyzed from the shoulders down. My breathing was shallow but I was managing without a ventilator, which made me very happy as I was told I couldn't talk attached to a ventilator! Talking was and is still my favorite hobby!
Long Nights in ICU
So there I was completely paralyzed, no-body could tell me what had happened and what was still to happen every test still came back negative. My family put on happy faces and tried hide how scared they were! It worked really well I was not at all aware of how scary the situation was. I remember the hospital psychologist coming to talk to me and saying.."you must be so so scared!" and I really wasn't sure why she would say that. I mean of course I would walk again and play sport..hopefully I could drop ballet. My biggest concern was that someone would take my place in the netball squad, while I was recovering.
The nights were endless and agonizing. I lay in ICU not able to sleep a wink, I made up songs to the beeps of the other patients vital monitors! The smell of burned toast was sickening at 12 o' clock every night when the night staff had their 'lunch'.
The strange thing about this paralysis was that even though I couldn't move at all my skin was hyper sensitive and itches drove me almost insane, remembering I was unable to lift a hand to scratch. I became an expert at explaining exactly where the spot was on my face. Let me tell you there is a the smallest spot of skin between the ridge of ones nose and the corner of one eye..that is by far the itchiest of all itchy spots in the entire body. How do I know this? That spot my dear friends was itchy 24 hours a day and no-one could find that spot. Don't talk to me about frustration! So being the creative person I am, I came up with a solution I figured out how to blow out my mouth in such a way that a strong gust of wind would hit the spot. Okay so close your mouth tight make a tiny opening by parting your lips at one side and blow hard, moving your mouth from left to right until you hit and conquer the queen of itchiness!
The creases on the sheets from shoddy ironing felt like razor blades under my sensitive skin. I was told there was nothing they could do about that. The nurses thought I was crazy
My Days
The days went by a lot faster with family and friends visiting and yes lets forget the constant tests being run that made life so fun. We'd start off the morning with a lumbar punch before breakfast then I'd have to drink 25 quarterzone tablets that I couldn't swallow too well. My mom would crush it and mix it with peach Tropica to hide the taste...did it work? NOOOOOOOOOO! To this day I start praying in tongues when I pass the Tropica section at the supermarket! By far the most fun were the procedures. By this stage Dr's suspected I had contracted Guillain barre. They started me on an exciting new procedure called Plasmapheresis Basically they drained blood out of my body replaced the plasma cells with donor plasma and then very kindly put it back, leaving me indescribably ill. I needed 10 sessions but at 5 sessions they realized I had not contracted Guillain barre but now suspected Transverse Myelitis The Dr's suggested we finish the Plasmapheresis anyway (they weren't ones being bled to death everyday). They needed to do tests on my nervous system to see if that actually is where the damage was. "How did they test for that?" I hear you ask, let me tell you, WARNING...not for the faint hearted. Well they hammered pins attached to electrodes and wires in to my body at various points and ran an electrical current through me (no I'm not kidding in anyway). The Neurologist then watched how my body freaked out and said " hmmm very interesting, definite nerve damage" Anyone still wondering why I'm a bit batty!
A Glimmer of Hope
After 3 weeks of no movement, Dr's warned I'd never recover. I woke one morning and my left hand had a funny feeling, the only way I can describe it is that my hand had potential energy. My hand felt like it could move at any moment. My mother slept at the hospital and she came through. I asked her to massage my hand, with all the energy in world I focused on my hand..and the my fingers curled open! What a celebration! The excitement in the ward was amazing, news spread through our little town of Springs 'Tania the paralyzed 10yr old' was recovering. The movement in my hand gave so much hope, there was life left in my body. The possibilities were limitless. With the new found hope I was sent home to recover.
Thursday, January 27, 2011
Tuesday, January 18, 2011
How did I get here...
I thought it would be a great idea to start at the beginning of my story so that everyone is totally up to speed. I know that most people are too shy to ask me questions about my disability, but after 23yrs I've had ample time to "deal" with it.
Okay so, sorry to those of you who know my story or who lived through it with me. click page down until we get to the more exciting stuff.
I was born healthy and strong, besides the fact that my sister was ready to enter the world and I was procrastinating as usual, which resulted in me being torn away and both my mother and I nearly dying. It was to be the first of many similar scuffles between Natasha and me. She was born ready to take over the world, I on the other hand I like to smell the roses. Being stubborn really just takes up way too much energy, which could be more wisely spent doing things like, pretending a pair a scissors was a barbie doll, as Tash had ripped my barbie doll in half by the waist. It's so fun to think back!
At the age of ten my life took, what I can only call, a very interesting turn. It started with an ache on my back between my spine and right shoulder blade. I was a very rough and tough child a real tomboy always climbing the most difficult trees, and spending huge amounts of time spying on everyone (much to my mothers constant horror) on the roof of our house, bearing in mind I was well under ten when I started. I had broken toes that never got to heal, we'd just strap 'em up and I'd be on my way.
So you can imagine when I first felt the pain in my back, it was not taken seriously. I figured I'd fallen out of some or other tree again and forgotten!
Well the next day the pain had developed in to pin 'n needles in both shoulders, I was about to go to a ballet lesson. I hated ballet I was convinced it was physically impossible point your toe keep your other foot turned out, back up straight and arms in perfect symmetry, without wobbling over, oh and "tuck in your derriere Tania". My mother thought I was just trying to get out of ballet, she rubbed on some deep heat lotion. By time I was supposed to leave, I couldn't move my shoulders or lift my arms at all. My mom by now was aware that something was very wrong, she got me in bath so we could get to a doctor. In the bath I remember not being able to reach for the soap and thought it was so weird that I had to slide my body forward in order to get it. I also fell backwards while putting my shoes on, and couldn't sit up and couldn't use my arms to push either, my bemused sister had to help me sit up. ( she thought I was putting on an extravagant act)
By the time we got to the doctor there was a long waiting list and I fell asleep. I woke up needing to get sick and tried to stand up, after falling flat on face, it became apparent that within that hour I was now no longer able to walk. I then remember doctors in a total flurry scratching their heads and saying "aah extraordinary"! I wondered what that meant. I was sent to Johannesburg to a hospital where specialists could review my case, but we first went home to have dinner with my poor dad whose birthday it was. Everyone gulped down the delicious roast, and headed off for what was to be the longest night of my mother's life!
Okay so, sorry to those of you who know my story or who lived through it with me. click page down until we get to the more exciting stuff.
I was born healthy and strong, besides the fact that my sister was ready to enter the world and I was procrastinating as usual, which resulted in me being torn away and both my mother and I nearly dying. It was to be the first of many similar scuffles between Natasha and me. She was born ready to take over the world, I on the other hand I like to smell the roses. Being stubborn really just takes up way too much energy, which could be more wisely spent doing things like, pretending a pair a scissors was a barbie doll, as Tash had ripped my barbie doll in half by the waist. It's so fun to think back!
At the age of ten my life took, what I can only call, a very interesting turn. It started with an ache on my back between my spine and right shoulder blade. I was a very rough and tough child a real tomboy always climbing the most difficult trees, and spending huge amounts of time spying on everyone (much to my mothers constant horror) on the roof of our house, bearing in mind I was well under ten when I started. I had broken toes that never got to heal, we'd just strap 'em up and I'd be on my way.
So you can imagine when I first felt the pain in my back, it was not taken seriously. I figured I'd fallen out of some or other tree again and forgotten!
Well the next day the pain had developed in to pin 'n needles in both shoulders, I was about to go to a ballet lesson. I hated ballet I was convinced it was physically impossible point your toe keep your other foot turned out, back up straight and arms in perfect symmetry, without wobbling over, oh and "tuck in your derriere Tania". My mother thought I was just trying to get out of ballet, she rubbed on some deep heat lotion. By time I was supposed to leave, I couldn't move my shoulders or lift my arms at all. My mom by now was aware that something was very wrong, she got me in bath so we could get to a doctor. In the bath I remember not being able to reach for the soap and thought it was so weird that I had to slide my body forward in order to get it. I also fell backwards while putting my shoes on, and couldn't sit up and couldn't use my arms to push either, my bemused sister had to help me sit up. ( she thought I was putting on an extravagant act)
By the time we got to the doctor there was a long waiting list and I fell asleep. I woke up needing to get sick and tried to stand up, after falling flat on face, it became apparent that within that hour I was now no longer able to walk. I then remember doctors in a total flurry scratching their heads and saying "aah extraordinary"! I wondered what that meant. I was sent to Johannesburg to a hospital where specialists could review my case, but we first went home to have dinner with my poor dad whose birthday it was. Everyone gulped down the delicious roast, and headed off for what was to be the longest night of my mother's life!
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