Photo Journey
Hi. With the recent changes in each and everyone's lives (pandemic - covid19 and all), I've taken to writing again.
I've taken to utilizing this stillness in the world to really stop and understand and cope with my health experiences since I last wrote. I've realized my journey went from 0 to 60 to 600000000000000000 really fast and I experienced most of it while in a fugue state. So to exist now...feels surreal.
Anyways, all that to say...I've also physically changed. This page is to serve as a photo journal of sorts. I needed to address the changes (some staggering). Buckle Up.
Part of re-opening the medical records and re-visiting this time of my life and trying to memorialize it is scary. and daunting. and frightening. and paralyzing. I'm afraid of what I'll find...
The physical evidence is already extremely eye-opening. So much so, that I need to put a disclaimer and say it is NOT for the faint of heart.
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Photo Journey.
I have compiled a few photos of my journey with lupus. These are photos taken over the course of 16+ years. Few are from my first "ride" freshman year of college - that's when I started Cytoxan chemotherapy treatment and things took a turn for the worst for the first time. Others from various bouts of lupus flares and related conditions throughout the years. These photos are just a peek into what it looks like to have this. Note that there are only several photos due to the fact that I don't like being photographed very much.
I've taken to utilizing this stillness in the world to really stop and understand and cope with my health experiences since I last wrote. I've realized my journey went from 0 to 60 to 600000000000000000 really fast and I experienced most of it while in a fugue state. So to exist now...feels surreal.
Anyways, all that to say...I've also physically changed. This page is to serve as a photo journal of sorts. I needed to address the changes (some staggering). Buckle Up.
Part of re-opening the medical records and re-visiting this time of my life and trying to memorialize it is scary. and daunting. and frightening. and paralyzing. I'm afraid of what I'll find...
The physical evidence is already extremely eye-opening. So much so, that I need to put a disclaimer and say it is NOT for the faint of heart.
-----------------------------------------------------------------------
Photo Journey.
I have compiled a few photos of my journey with lupus. These are photos taken over the course of 16+ years. Few are from my first "ride" freshman year of college - that's when I started Cytoxan chemotherapy treatment and things took a turn for the worst for the first time. Others from various bouts of lupus flares and related conditions throughout the years. These photos are just a peek into what it looks like to have this. Note that there are only several photos due to the fact that I don't like being photographed very much.
Prednisone and "Moon Face" on my way to my first chemo treatment (2007)
Shrek Legs
(notice no ankles...where did they go?!!?)
Below are the less gruesome photos of my time with Calciphylaxis
and the subsequent months of recovery:
Normal face. woot. woot.
Boston Medical Center in Boston, MA where I got my first kidney transplant.
Article in the local paper in St. Croix, USVI (where I'm from) about my transplant.
Just a reminder.
One of a gazillion various procedures I've had.
Keeping it classy with a cheese plate.
and the subsequent months of recovery:
and here I am just a few mins ago...
As life continues and things come up, I'm sure i'll have more to share.
If you're interested in seeing my experience with Calciphylaxis,
please visit my Calciphylaxis Resource Page
please visit my Calciphylaxis Resource Page
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