General Update ~ A Bit About Me and Cystinosis Too

I have to get used to doing general updates. Especially when I have a tendency to dissapear for a month at a time.

It is so strange to talk about myself. But I think some things are important. Let me give you some background. I have a rare chronic condition classified as terminal. I'ts called Nephropathic Cystinosis. It is extremely rare. The type I have is diagnosed during young childhood. There are only about 500 people in the United States diiagnosed with this. I believe about 2,000 world wide. This is the general definition from Wikipedia:

"Cystinosis is a rare genetic disorder^[2] that causes an accumulation of the amino acid cystine within cells, forming crystals that can build up and damage the cells. These crystals negatively affect many systems in the body, especially the kidneys and eyes.^[1]
The accumulation is caused by abnormal transport of cystine from lysosomes, resulting in a massive intra-lysosomal cystine accumulation in tissues. Via an as yet unknown mechanism, lysosomal cystine appears to amplify and alter apoptosis in such a way that cells die inappropriately, leading to loss of renal epithelial cells. This results in renal Fanconi syndrome,^[3] and similar loss in other tissues can account for the short stature, retinopathy, and other features of the disease.
Definitive diagnosis and treatment monitoring are most often performed through measurement of white blood cell cystine level using tandem mass spectrometry."

I know. Some things are still hard to understand. But I wanted to give you something. Anywa, this condition also causes a whole list of secondary conditions. Thant just means conditions caused beacuse of it. I say I'm going to save most of this for my memoir, but I thought it was time to share some of the secrecy.

Due to my condition, I have a very weakened immune system. And whenI get sick, oh boy do I get sick. Total my entire life I've been in patient in the hospital 34 times. I'm 21 and a half. 2012 was not a great year. I was hospitalized 3 times this year. This time may well have been the worst though.

Do you know what electrolytes are? Well they are very important. First what happnened wasI got Pancreatitis. And then my electrolytes dropped. And then my muscles froze up and I couldn't move or talk. And I started halucinating. I came out of it, but then they spent the nest two weeks trying to get my electrolytes right.  One thing effects another and on. It is quite a process. I got out a few days before Christmas though. (For full details see my memoir.)

On to writerly things:

Since I've been home I have written 39 poems about my recent hospital stay. I'm toying with the idea of maing a collection out of all of these. This could be a forth coming project.

Today I finished typing all of these poems I wrote.

I have a renewed resolve to finish my Young Adult Romance My Heart is Yours. I worked on it today.

I was invited to speak at a high school. My first speaking engagement. Eek!

I started a facebook page for my book Thousands of Mornings. http://www.facebook.com/ThousandsOfMornings?ref=hl

I think that's it on writer stuff.

Here's some bookish Christmas stuff:

I got The Complete Collected Poems of Maya Angelou, Robert Frost: Complete Poems, Prose and Plays, a Barnes a& Noble gift card, a journal.

Here's something you may not know about me. I adore cooking. I got some "chef" stuff too"

An egg cooker.

A panini press.

Gourmet spices.

An apron.

If you want to see more about cooking and/or me on my blog let me know? I hope you had a happy holiday and have a happy new year. My next post will be about resolutions.

Thanks for reading.

<3 Amanda Leigh