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

August 17, 2005

Reports from Houston - August

Another Weakly Update ;)

Why do Texans think they have to keep the a/c set on 72 or lower? I know it gets hot here, but hey, think how much energy and money we would save by turning up the thermostat a few degrees.

So it continues my dear friends and family… I’m still cold. It's been 7 days since my last treatment and while I admit I’m not as cold, as I type this I have the heater going, shawl draped around my shoulders and the unibomber look is backkkkkkkkk!!!

Ok, enough griping. I don’t have much to report. I went to Houston last week and had my photopheresis treatment. Told the doctor in charge of the machines about me not being as cold last time and he said, “oh well, let me know if it happens again and I’ll talk to Dr. Duvic.

Ok this is now a week later and I’m finally getting this finished. Here’s what’s happen this week:

I HAD NO IDEA

On Saturday night Keith and I went to a very nice restaurant to eat. After we got up to leave I realized that I had not been cold or itchy for the 2 hours we had been there. Ok, granted, I had on a turtle neck sweater, heavy knit sweater and sat with my back to a large window that faced West and was still warm from the afternoon sun! Oh yea, and it might have been the Amarula (On the wide-open plains of Africa grows a tree uncultivated by man. Scientists call it "Sclerocarrya birrea", but it is more commonly known as the Marula tree. The tree only grows in one area on the entire planet, the warm, frost-free (unlike me!) regions of subequatorial Africa. It is from the fruit of this mystical tree that Amarula Cream is borne). and coffee! OH MY GOSH… now that made me feel very warm. Anyway, I had no idea how much energy of each day I’m spending trying to keep warm and not scratch.

My skin continues to look better but I’m sooooooooooo tired. Today I slept (after 8 hours last night) 5 hours and I’m ready to go back to bed again. I had turned off all the phones, put the answer machine volume on 0, left my cell phone downstairs, but dang, forgot to turn off my pager. So if my pager had not gone off who knows how long I would have slept.

Now to the important stuff, prayer requests: I mentioned earlier the woman in Marble Falls who has MF and has been doing those wild wraps (lay on a bed, smothered in a steroid cream, wrapped in hot towels, trash bags and blanket) well anyway, she said that she was completely itch and flaky free. So Keith and I have committed to doing these wraps each night. It is time consuming, but if it helps w/the itching then it’s worth the time and effort. So pray that we will be up for this challenge each night, when we are both tired. Pray for me not to be exhausted. My job, my house, my kids are all suffering because of my extreme tiredness. I’m still cold.

I’m off to Houston again next week. I won’t have any information really until after September 14 when I see Dr. Duvic again

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