Friday, June 5, 2009

Charity

Because of the controversy surrounding Lyme Disease and the hot debate concerning the proper treatment, our insurance company will not cover the IV treatments I so desperately need. These IVs are extremely expensive and now, my parents have exhausted all of their financial resources. But, not to be deterred, we have begun organizing some fundraisers to try and help pay for my medication.



I cannot believe the outpouring of love and support I have seen from friends and family alike! I feel so blessed to be surrounded by people who love me enough to sacrifice time, money and goods to help me heal. I am left speechless each time I hear of the generosity of those around me. I thank you all from the bottom of my heart for your love and support during this difficult time!


Monday, June 1, 2009

Under Our Skin

PLEASE WATCH THIS!!


This movie sets fire to the seat of my pants! When I was finally diagnosed with Lyme Disease I felt a profound sense of relief. At last I knew the name of the demon I had been fighting for so long! Little did I know that a diagnosis was the beginning of my battle. I never could have dreamed that with this diagnosis I became, along with countless others, lost in the 'Lymelands' searching for support, treatment, and a voice. In the end I see that it is up to me to be that voice - to raise the banner for those who will inevitably come after me.

Friday, May 29, 2009

The Low Down

It always amazes me as I look at nature, how intricate, delicate, and yet powerful it is. The beauty and splendor present endless opportunities to learn. Sometimes the most beautiful and powerful things happen right within our own bodies. How could something as small as bacteria make me so sick. I always wonder if you took all of the spirochetes (a name for the bacteria that causes Lyme disease) out of my body how much would there be, a head of a pin, a handful, or would it be microscopic? It is so fascinating! Sometimes I wish my skin was transparent and I could look through to my insides and watch how it all works. I could see where the bacteria has infected. Is it in my heart, my brain, any of my organs, or all of them and more? I can do that ya know! It's a mean little sucker. But I'm killing it. Slowly but surely.

Wednesday, May 27, 2009

The Beginning

In January 2005 at 15 years old, I traveled to Washington D.C. to play with the American Fork High School Marching Band. Little did I know that upon my return, my life would change forever.  The week after I returned home I became very ill, and I didn’t get better. It started as, in the words of the great Dave Barry; 'The Martian Death Flu'. This was followed by debilitating fatigue. I could not even stand. I spent weeks on the couch. Finally it seemed to ease and I tried to go back to school. I got through one hour and had to go home. Doctor after doctor reviewed my case. The list looks more like something you would see a sweet little old lady carrying in the grocery store:

Pick up:
- 4 Cardiologists
- 2 General Practitioners
- 4 Neurologists
- 1 Endocrinologist
...

The list goes on for more than 35 doctors! But each one was baffled. Each came up with a different treatment, some worked for a few weeks, some made it worse. According to doctors I have chronic fatigue syndrome, sleep apnea, migraine disorder, orthostatic hypotension, and autonomic nervous system dysfunction, among others. 

I began to wonder if I was crazy. Was it all in my head? It couldn't be, I love life! I have too many dreams. I want to be well!

Finally I found myself at Primary Children's Medical Center across from the doctor who was supposed to be the best, the one for me. He looked at me and said, "I'm afraid I can't help you, and I don't know of anyone in this part of the country who can." 

When the doctors quit I didn't. I tried diets and supplements, and they helped some, but the success was only short lived. This January my symptoms roared. I thought I was sick before! This dwarfed anything I had experienced. I found myself unable to think clearly or concentrate. I agonized with neck and head pain. I fevered at over 103 for days. In desperation my parents took me to a doctor that had helped me some about two years earlier. The only one that had. Four years, almost to the day, since that Martian Death Flu, this doctor unearthed the answer. After doing a routine blood test, one that could have easily been done years before, I was diagnosed with Lyme Disease. 

Lyme Disease? 

What's Lyme Disease? 

Don't you get that from a tick? 

Did I get a tick, I don't remember a tick?! 

I was thrust so suddenly into a world I knew nothing about, it took days to sink in. But I wasn't complaining?! At last! A doctor with an explanation why I was so incredibly ill, and what's more, a treatment plan. 'The road wasn't going to be easy,' they said. They were absolutely right! But after ten weeks of treatment I see marked improvement! I have found others with Lyme, with my same symptoms. I'm not alone!

This is my story...