Tuesday, June 3, 2008

Taking a Moment to think... For all you new people- instead of going back and reading every post here is a current update on why this blog came to be

In July of 2005 my life changed- had we known then what we know now we may not be in the situation we are in today. Although here we are pushing forward pushing on.

I was bit by a tick and had a typical bull's eye rash. Through the ignorance of the doctor in the ER I was placed on the wrong antibiotic and no blood tests were taken for Lyme disease. Just weeks later I had my first seizure episode on a missions trip in PA around 5 hours away from home without my parents. From that seizure I developed other symptoms including but not limited to extreme fatigue, constant headaches, and flu-like symptoms.

This was the beginning of my Freshman year and the beginning of Lyme disease treatments after a battery of blood tests I was diagnosed with Lyme disease and had the minimal treatments for the disease.

From then on I was 'cured' from Lyme and all the surrounding fears we had of it. We thought I was going to be back to normal back to regular days hanging out back to being me.

A wake up call came my Sophomore year when at the beginning of the year I started feeling "off" things weren't adding up right and I was struggling in my classes. I collapsed in school in December I was quite sick and we didn't know what could be wrong. Running more blood tests and finding nothing I had the doctors surrounding me baffled and it took the local cardiologist to help with getting me to a Lyme specialist who diagnosed me with Lyme for the second time. What a huge answer to my difficulties in school my slipping in and out and confusion along with seizures, extreme fatigue, pain, and back to back ear and eye infections. Who would've known what that diagnosis would've lead to. Through that time I learned that anything is possible through at home tutoring and the faithful work of your guidance counselor and teachers. Although very tired and weak most of the time I started going back to school 1/2 days by April of my Sophomore year, went on a spring break trip to Florida with the school marching band and things seemed to begin to clear up.

Little did I know in June I would be back in the hospital with another 'episode' resulting in a short stay in NYC where no real diagnosis would be made. We were searching for answers throughout the summer and I was placed on IV by July of Summer of 2007. But during that summer another dream was born. Lyme Walk- For those who can't. A Lyme disease awareness walk that my friend Sarah and I decided would become a reality for what more did we need than for others to realize what I had gone through.

Junior year I was starting out well with ending the summer at band camp and joining the marching band for pre-week. I was excited to finally be getting back to my "normal" life and started school. Within the first week I realized I wouldn't be able to hold my own day in and day out and began missing school around twice to three times a week. I was exhausting myself by going to school. So I decided I would be willing to give up anything to go to school. And started using a wheelchair to get around school. Now if having a weird sock around your upper arm wasn't enough now having a wheelchair really raised questions among my peers. Although I tried to answer them each to the best of my ability. Truth be known it wasn't pure laziness but it was pure exhaustion that was really making me sick.

By October I was doing okay in school traveling across the state and out of state for doctors appointments and I was trying my best to hold my own with my grades to be able to make it to the marching band championships. I would only meet myself half way there maintaining decent grades but missing championships due to another seizure the night of one of our marching band practices. I was bummed out. I ended up being transferred to Rochester about an hour away to another "better" hospital for my treatment. I stayed there for a month meeting some of the most inspirational people but not really getting any answers.

October turned into November and before I knew it I was home back where I belonged after a very long tiring and stressful stay in the hospital. I missed my friends I missed my family and I missed the comfort of my own home.

After that I decided to give school another fair shake with trying to go back after Thanksgiving break. With only another seizure during my last class of the day- I was quickly transferred to Rochester with a scare where I quit breathing in the ambulance on the way up getting taken to another local hospital during the transfer.

Within just a few days of being in the hospital I was released with no problems- or so we all thought. I went to stand with lap top in hand and fell almost dropping my computer. I couldn't walk and had lost feeling in my legs. This was just another hurdle to overcome. I was in my wheelchair and not seeing very much improvement I was pretty upset but trying my best to adjust to his lifestyle. By Christmas I had pushed and got myself walking with a walker! Which was a huge improvement to my lifestyle.

And yet again I became ill February brought new stepping stones to step on. I turned 17 and I was working my hardest to get back on my two feet. Looking forward to prom which was months away but gave me something to hope for. I began seeking more inside my bible and worked harder and also started the blog for the new year. Although things took twists and turns and I fell quickly out of sight.

I ended up in the hospital and then later in ICU in a medically induced coma from seizures. After that date it was confirmed I was having seizures and I was medically diagnosed with some form of seizure disorder. Those days were filled with hospital stays and as soon as I would be on my feet a little more I would be knocking down the doors of the ER on a stretcher. With another scare and the removal of my gall bladder.

Through the nightmarish days there has been some clarity- I walk now without assistance and I made it to prom. Things that we never thought would be possible. I have come a long way from days filled with hospital stays. Although the pain is ever so present my lungs have not completely recovered and so many other things still linger. I can look back upon these 3 years and say- I have come a long long way.

Although this isn't every detail that happened over these past three years this pretty much sum's it all up. I cannot say every needle poke or MRI or CT scan I have had but my arms can sure vogue for some of them. Through 4 picc line's and now a port. My life has changed but I cannot complain because it has been for the better. For "Out of Adversity comes Awareness"- Marissa Angell.

Hope you stop back soon I try to update the blog frequently!


1 comment:

M Levin said...

How did you get "medically diagnosed with some form of seizure disorder" with no abnormalities on brain wave tests? Or did you simply discount the evidence from an two epilepsy centers that demonstrated psychogenic nonepileptic attacks?

The disparities between the story you tell and your actual testing should make you question the diagnosis.