28 10 2009

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.





5 responses

29 10 2009

porph group at –http://health.groups.yahoo.com/group/Porph/

very helpful and sympathic folk there.

several things to do such as alter lifestyle to avoid triggers, etc. list of triggers in files at http://health.groups.yahoo.com/group/Porph/

30 10 2009
Nancy Fritts

I’m crying too Sabrina! I refuse to beleive these stories will be yours! Seems no one ever writes about the good things. Hang in there you could be the exception to the rule!! I have always believed if God brings you to it He’ll bring you through it!! I continue to pray.

31 10 2009

Hi Sabrina,
finding people to share experiences with about AIP is very difficult, yes, and the sites and meetings I have been to were horrific.
My mum sent me a link to your blog today and I am not quite sure what I think of it.
Keeping your spirits up and having a sense of humour are definately things that one needs to survive this kind of disease, but while reading your blog today I couldn’t help feeling the need to tell you that you HAVE been very lucky so far, and why the hell are your doctors giving you Metoclopramide (reglan)? This drug is dangerous to us! Please check out: http://www.drugs-porphyria.org, its a pretty good database. Reglan is listed as probably porphyrinogenic (PRP) here too, and you should really be getting something else for your nausea.
All the best wishes and count your blessings!

13 11 2009

Hi Sabrina, I just found your blog a couple of days ago — I have AIP too and I’m so so sorry you’ve been having a rocky time. I sympathize, I really do, about wanting to have a prognosis (or better yet a guaranteed prediction!) about what your future will be like. But as you’re finding out, that’s one of the tough things about living with a rare disease. When so few people have it, it’s awfully hard to generalize about how they fare.

For what it’s worth though I did want to let you know that several of my family members have had one or a couple of AIP attacks and gone on to recover and live perfectly normal lives. Of course none of their experiences predicts what yours will be, but maybe that kernel of hope is worth something for you? I hope so, and I hope you feel much better soon! You mentioned you might get in touch with the American Porphyria Foundation and I hope you do, we would love to hear from you.

25 10 2014
Barbara Bradbury Wilcox

Laughed aloud at the “soap aisle” comment. Yes to be avoided, but would you dare to tell your friends or most medicals? Glad someone else knows it. Do hope you get control if attacks. At the first sign, pour in the glucose every ten minutes or so.

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