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Showing posts from July, 2011


LOL It's so hot.. Perhaps, as you stumbled in the house, clammy and damp, you said, "Man, it's hot," for what seems like the hundredth time. We know we have and we're tired of repeating ourselves. We figured if our bodies can't be fresh, at least our words can be.

Until the heat peaks in August, try out a hot phrase. They won't make the temperature drop, but they might make you smile. And that's pretty cool.

• It's so hot the birds have to use potholders to pull worms out of the ground.

• It's hotter than a half-bred fox in a forest fire.

• It's hotter than two bears fighting in a forest fire.

• It's hotter than a billy goat in a pepper patch.

• It's hotter than two cats fighting in a wool sock.

• It's so hot that I tied my mule in a field of corn, and the corn started popping and the mule thought it was snow and froze to death!

• It's so hot I saw two trees fighting over a dog.

• It was so hot today I saw a dog chasing a cat and th…

Pain Levels (EPP): by Victor Mejias

Pain Levels (EPP): by Victor Mejias
In this posting I am going to attempt to document, on a Zero to 10 scale, differing degrees of pain and (with the exception of swelling - refer "note B") other symptoms involved in differing degrees of EPP reactions to sunlight.

The level zero will of course be defined as that state where there is no light exposure effect whatsoever, and a level of 10 will be the complete opposite, i.e. a totally out of control EPPreaction after a great deal of exposure.
I attempt this in the full knowledge that both the speed of reactions as well as their severity, as hereinafter described, will and do differ from one EPP patient to another and thereforesome may not agree with everything that follows.
However the reasons I am attempting to do this basically are: - The degree of pain involved in EPP reactions has been "sadly under-articulated" in general (to say the least), and therefore not fully appreciated by the medical profession or some EPP par…

Miranda's Advice to College-Age Porphyria Sufferers

You’ve just turned 21, and you have a rare disease that forbids you from drinking. You go to parties where people pull a PBR from a bathtub or do keg stands. People are getting progressively drunker; even shy people who never talked in that English lit class you had are suddenly dancing on a table, and you are standing by, utterly confused. You’re holding a beer. You take a sip, but you don’t actually drink it. You just kind of hold the beer, hoping no one expects you to consume. Later, you give the beer to someone when there’s no more beer left in the bathtub. Someone offers you a cigarette. “I don’t smoke,” you say. Neither does that person, “just when drinking.” You begin to wonder if you’re an alien.

Don’t worry, it’s totally normal if you have porphyria!

I went to a tiny women’s college in mountains of Virginia, where there’s not a lot to do besides drink. American college life sort of stipulates that you make a lot of poor decisions, including possibly getting your stomach pumped…

In Praise of Chicory Coffee (and Grandmothers)

As a child and a teenager I was lucky enough to live in the same city as my grandmother, who was a health nut and a bit of a snob when it came to good cooking, especially in restaurants. Up until I was a teenager I had no idea that my grandmother knew how to make sweets like fudge or divinity. I assumed that she got her sweet tooth fix from ripe blueberries and the occasional custard. It turns out she simply chose not to eat rich, unhealthy desserts, except very rarely.

She’s a great example of someone who was able to eat very healthy while maintaining the necessary carbs to prevent Acute Intermittent Porphyria attacks. Now that I’ve grown older and can appreciate what I thought was rather fanatic as a kid (it wasn’t) I like to follow the examples she set in my own health, as evidenced by previous posts of mine.

One thing she introduced me to, which I am forever grateful, is chicory coffee, served with steamed/heated milk and maybe a little sweetener, New Orleans style like at the famou…


Written All over His Face: Rare Disease Offers Clues to How We Read EmotionsPeople who feel what they see offer clues about how we read emotions and empathizeBy Michele Solis | July 4, 2011Understanding the thoughts and feelings of other individuals is essential for navigating the social world. But empathy is a complex process, based in part on fleeting facial expressions. Research suggests that we empathize by effectively putting ourselves in others’ shoes: for example, when we observe someone feeling sad, we simulate their experience by activating the same regions of the brain that are involved when we feel sad ourselves.A study in the