Diagnosed

I grew up in an amazing family. I am the youngest of four girls- Carina, Mercedes, Brandan, and then myself- and we have the most loving parents. And I am so grateful that I have this wonderful family because without them, I would never have been able to go through all that I did.

Now for the story- which is all based on family members' recollections (I was 4 at the time and cannot remember). My sisters and I were performing in what we called the "Basement Productions"- our fake theater in our grandparent's basement where we put on little shows- when my parents seemed to notice something on the back of my legs. They called me over and I sat on their laps as they examined me. Apparently, I had these large red bumps on the back of my legs. We had no idea what they were or why they were there.

So our search began. We went to many doctors. They would biopsy the bumps and become puzzled. It was a reaction to a normal bacteria that most people's immune systems should be able to fight off. But why wasn't my immune system kicking in? Why was it not fighting?

Finally, one doctor performed a simple blood test on me to see if I had a rare disease called Chronic Granulomatous Disease, or CGD. Now the odds of having CGD is 1 in 250,000...
And I had it. Once again, I must remind you that I remember none of this. At least, I didn't until I was checked into the hospital to treat the infection with IV antibiotics given through a large tube in my chest. My first memory is of waking up at night to see my parents sleeping in chairs in my room. That's it. Just a snapshot of my parents snoozing at the foot of my bed etched into my mind.

I can't even fathom how my parents felt. I imagine it was something like this: They had three healthy children. Why did this happen to their fourth? How much do we know about the disease? Is this fatal? How will this effect her life? How will this effect our life? But mainly, how do we make it better?

So that is the beginning of my story. My first memory is of a hospital and my parents at my side taking care of me. And I guess this is why my version of normal has always included illness.

Blogger Virgin

So I've been trying to write down what has happened in my life for a while. At first I wanted to write a book, but every time I tried, I could never figure out how I was going to end it because my life is still happening. So I have come up with the idea to blog because I can share the story of my life slowly and on my own time while still continuing my story in the present.
So blog reading community- welcome me because I am a blogger virgin. I have absolutely no idea what I'm doing. Please be gentle. As for what you need to know about me in the present, I'm 23 and I'm still alive. Starting from the beginning of my memory, I'll post the next excerpt in my life every week. It gets gory sometimes and quite personal. I'm going to make grammatical errors and maybe even "plot" errors. But I am me and you will just have to accept it.
Here goes nothing.