Update from my December 5th and 6th appointments.
But first the Horrors of Pizza. On Tuesday, after my blood draw, my bed for my photopheresis session wasn't quite ready, so my mom and I went downstairs to grab a bite to eat. The pizza looked so good... a 4" x 3" square with lots of meat on it. I got onlyone piece! We ate and then headed back up to the 8th floor. About 45 minutes later they hooked me up to the machine and began drawing blood. Well, when it got time for the red blood cells to be separated from the white blood cells (called buffy coat) all the alarms on my machine started going off. Hmmm... Well we weren't' sure what was causing it and they reset the machine. Ok, got thru cycle 1. Here comes cycle 2, I see buffy coat displayed on the monitor and again with the alarms already! Veronica, the PA on duty that day, walks over, pulls up my bag of white blood cells that is almost full of what looks like very watered down milk. She says to me, "What have you been eating?" I sheepishly reply, "One piece of pizza." To which she says, "Ohh, too much fat!" My normal 6 cycles that day ended up being only 3!! (to see the bag under normal circumstances click on January Archives and see a picture ...and NO I won't be a guinea pig for you and try out different foods to see which ones have exessive fat!)
Uh, I've not eaten any pizza since, then... well ok two very small pieces on January 30th! But talk about grossing me out... fat has suddenly taken on new proportions!
Questions Answered
Question: Will my color every go back to my normal color?
Answer: Probably not.
Conclusion: Ok, I have a perpetual tan.
Question: I have these little black dots, see like here on my calf. What is that?
Answer: Oh that's where you've damaged the cellular level of your skin from scratching.
Question: Will they ever go away?
Answer: Probably not.
Conclusion: So that's why they call this a disfiguring disease
When suffering does not destroy you, even though you have been to the edge of the abyss, you know something that you cannot know in any other way. Someone else is sustaining you. You are indeed living by a life not your own. Or as I love to say, "Your life is not about you." It is henceforth, most truly, about God. And you are merely "free sample" of what God has always been doing. - Quote from Richard Rohr
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