Hyperventilating.

Just a quick post:

I’m freaking out. Last night, after not feeling well off and on all day and hurling my delicious dinner into the sink at the Bier Garden (we were there strictly for food, not for beer, I promise,) I decided I should come home and check out the two porphyria websites that exist and see if there is a listserve or message board or something. I want to hear from others how long their attacks last, and how long it will be before I’m feeling back to my old self again.

Well, nothing as sophisticated as that exists. The closest thing I can find is a network of porph patients I can join through the Porphryia Foundation, but to join said network, I must mail in a registration form. As in, mail with a stamp in an actual, physical mailbox. And then I’ll get a list of email and mailing addresses of people who have the disease. I guess I’ll do this, but I was looking for more immediate gratification last night.

So I found a site that had people write in their stories and tell their personal porhpyria tales. I read these tales. And I cried and cried and cried. All these people are living sad, miserable existences! They all have stories about having their first attack, then not getting better and continuing to have them more frequently and more intensely until they’re forced to go on disability and sit in their homes and hope for a good day to roll around sometime so they can go grocery shopping, which will probably give them another attack because they’ve developed such sensitivities to the chemicals in the laundry aisle.

What the hell, people!

I just have to believe that this isn’t true for EVERYONE with AIP, but unfortunately, so far there’s nobody who can tell me otherwise.

Shit.