My Story

Okay, so I'm holed up in my bed with bad back pain, and so I figured now would be a good time to update this thing. I should warn you that I'm a pretty jumbled writer, but I'll try to keep this as coherent as possible.

So here we go. I was born on June 15, 1992. I have two older sisters, Holly and Chelsea, who were born in December of '87 and April of '89. My mom is Sheri, and she's a high school English teacher. My father, Richard Keith Jones, passed away on June 17, 1999, from Leukemia. So needless to say, my life has been pretty lacking in the male figure department, except for my mom's brother. Everyone on my dad's side of the family except for his mom pretty much stopped talking to us after my dad died, so relationships are kind of non-existent there. But honestly, I don't really miss it.

I guess the biggest part of "my story" is medically related. Most of my problems have stemmed from that, even before I was born. When my mom was pregnant with me, she had an amniocentesis (spelling?) because the doctors thought there was something up with the fluid level, and afterwards they practically swore to her that I was going to be a Down's Syndrome child for a few weeks, till they learned my genetics were fine. When I was born, my head was five centimeters larger than your average 39 week, 7 and a half pound baby. (Yes, that did cause my mother extreme amounts of pain, but she survived. :) They soon learned that I had severe nerve damage down the entire right side of my body, but they wouldn't know the effects of that until I was growing. From then on, my life practically revolved around hospitals and doctors. I've had nine surgeries, and I'm facing my tenth in early April, along with various other medical issues. So let's start from the beginning.

When I was two, I had to get tubes put in my ears. Also this year, one day I fell out of my high chair and had a seizure. The doctors never knew if the seizure caused the fall, or the fall caused the seizure. I spent months having tests done trying to figure out what was wrong, but things just kept getting worse.

In 1996, I got chronic tonsilitis and had to have my tonsils and adnoids taken out. By this point, my neurologist had gotten me on a seizure medication that didn't get rid of my seizures, but did reduce them.

In March of 1997, my parents separated. My parents worked out a good custody arrangement, though, so my sisters and I got to spend plenty of time with our dad.

In the summer 1997, my mom, sisters and I moved back to her hometown (also known as SmallTown, NC). She went to register me for school one day, and I walked into the bookkeeper's office and started reading the adult novel on her desk upside down. She and my mom and the principal quickly came to a consensus that I didn't need to go to kindergarten and was signed up for first grade at the age of five.

In August 1998, my sisters and I were with our dad, and he went to the doctor because of some lumps in his armpits. He was diagnosed with Leukemia that day.

One day in early 1999, I went to my regular family doctor, and she noticed a strange lump in my throat. I was immediately sent for testing, and they found a tumor the size of a golfball on my thyroid. In March, I went to Duke University Hospital and had half of my thyroid removed. Testing showed it was benign, but the doctors said there was a high chance tumors would grow back in the other half. I was four floors below my dad at Duke while I was recovering. He called me every day. That was the last time I would ever get to see him.

In June, he passed away, and I could've sworn that it ruined my life. I was so distraught that I turned my back on God. I couldn't understand how someone who was supposed to love me could do that to me.

In 2000, for some bizarre reason, my seizures just stopped. My neurologist tapered me off the medicine.

In 2002, I began getting migraine headaches. In August, my neurologist ordered a spinal tap, and they found out that my spinal fluid was incredibly high, putting the pressure on my brain. I missed the first few days of sixth grade in recovery. In September, I had brain surgery to have a shunt put in to relieve the fluid. They told me I'd be in the hospital for a week. They let me go in three days.

In 2003, I went to a retreat with a local church and got saved there on the beach. It was absolutely a day I will never forget, and I still thank the people who mentored me that weekend.

In 2004, I went on a trip to Busch Gardens with my school. I waited in line for 45 minutes in 95 degree weather and had a seizure. I fell flat on my chin, busted it open, and the bone in my left cheek that holds my jaws together completely snapped in two. Thankfully, I still had braces at the time, so my orthodontist rubber-banded my jaws together for six weeks.

In the middle of my freshman year of high school ('05-'06), my seizures came back full force. Sometimes I would pass out twice in one school day. They almost considered taking me out of school and making me "homebound" it got so bad. Several medications were tried, some made it worse, until a special "seizure doctor" found the one that took all my problems away. Granted, I was on the highest dose possible, but at least I wasn't passing out every day in school. In April of 2006, I tore cartilage in my right knee, and had to have another surgery. I spent my whole spring break laid up in bed. In August of 2006, my wisdom teeth came in (four years early, I might add) and got impacted. At the time, we didn't have the insurance to cover the surgery, and we were worried because, with my brain problems, an infection in my mouth could be really dangerous, so we had to get the teeth out as fast as possible. I'm serious, I have to take heavy drugs every time I go just to get my teeth cleaned. But, thank the Lord, my orthodontist found an oral surgeon who would do the surgery at a reduced price.

At this point, I had been getting allergy shots since about 3/06 to get help for severe allergies that I've had all my life. At a yearly check-up with the ENT in December of '06, she got an x-ray of my nose and saw a severely deviated septum. She scheduled surgery for it. Since she is an ENT, my mom asked her if there was anything she could do about my thyroid. We had found out in 2002 that there were microscopic tumors growing in the half I had left. She ordered an ultrasound, and the tumors had grown, so the next month, in January 2007, she straightened my nose and took out the second half of my thyroid.

In March 2007, my mom and I got an appointment at Shriner's Hospital about eight hours away, because she really wanted to see if they could do something about my deformed feet. They couldn't, but while we were there, they took an x-ray of my back to check up on the very mild scoliosis I had been diagnosed with years before, and realized that it had gotten much much much worse. They set up an appointment in July to possibly think about surgery. In April, I fell while visiting Holly up at her university, and tore cartilage in my left knee, meaning another surgery. However, because of my nerve damage, I couldn't use crutches, so we borrowed a wheelchair from a church friend. Wheeling yourself around a crowded high school is not easy, my friends. But I got over it. In July, the Shriner's people decided that scoliosis surgery was going to be the only way to fix my back problems. In Septemeber, they did the surgery. I was in the hospital for a week, they said I'd be in there for two. I was out of school from September 11 - October 29. I still think it's funny that my Biology grade was higher when I was teaching myself than when I was in class. :)

This surgery coming up in April is another sinus surgery. I've had constant sinus infections since August 1st, and there hasn't been a day that I've felt well. The pressure in my swollen nose has re-deviated my septum, so my ENT is going back in to fix it again, remove more sinus tissue, and reform the drainage passages. She's already warned me that I'm going to be a "raccoon face" for at least a week.

So anyway, I think that covers it. I have to thank God for giving me such an amazing mother who takes care of me so diligently. I also have to thank God for saving my life so many times.

Even though I've been through a lot, I'm told by pretty much everyone that I don't seem to let anything get me down. I guess they don't know about my bad days!

All right, I have to go get in the shower...School tomorrow! *groan*