What Would a Porphyric Do?

9 04 2010

(I’m trying out a new look here. I felt the other was getting a bit stale. I may change it again, until I’m fully satisfied. I wish I knew more about how to make it look exactly how I want, but for now I’m stuck with the freebie themes that wordpress provides. Unless somebody brilliant wants to help me out in exchange for some gluten-free brownies.)

I’ve been getting a lot of messages and emails lately from people who are new to the world of porph, or who are waiting for a diagnosis. It’s driving me nuts. Not that I’m getting contacted,  (AT ALL! Keep ’em coming!) but that so many people have one of the same two stories: 1. They’ve been diagnosed, and now are facing a world of doctors with no information for them, or B. They’ve done their research, their symptoms match up, and they’re desperately seeking a medical professional to believe them and test them PROPERLY, so that they can get a diagnosis.

I have to say, I’m pretty darn lucky that my story went the way it did. I only spent 4 agonizing hospitalized days before I was handed a diagnosis (if you don’t count the 15 years of mystery symptoms and ER visits.) Many people suffer through days, weeks, months, even years, in that kind of crisis, in and out of hospitals, with incorrect diagnoses, before a doctor will land on porphyria. I don’t understand it completely. It’s a disease. With a list of symptoms. And tests that can be done. Yes, it’s rare, yes the test is a little tricky, but it absolutely exists, so why are doctors so hesitant to “go there”?

I wish I could give out the right answers to everyone who writes to me asking if I know what they should do next, but I’m just figuring this shit out myself. I have no idea what I should do next! I get most of my advice from the yahoo group of porphies, and from the APF. But the thing with internetting it is that I have to censor the information as I see fit. Pick and choose. When it comes to medical information, so much floats around and not all of it is good. And I’m the first to admit that I’m REAL gullible when it comes to anything medical. I’ve learned to stay away for the most part, but I’ve been known to spend hours on webmd, and at the end of a session, I’ll have diagnosed myself with 24 different ailments, and when Eric comes in from work, I’ll explain to him slowly that we only have a matter of weeks left to be together, because my watery eye is a sign of West Nile Virus, and my  bad breath points to pleurisy, which is almost certainly a sign of heart failure, which was probably brought on by cardiomyopathy, a result of drug abuse and WHY DID I HAVE TO TAKE SO MUCH ADVIL FOR PMS WHEN I WAS IN COLLEGE??? WHAT WAS I THINKING!!!???

So yeah. No more wembd for me. At least the yahoo group is full of real, actual porphies who have lots of experience being porphyric. And that’s worth loads in a world full of doctors who don’t bother researching the disease because so few people actually have it, and they can’t make money off THAT, now can they?

The APF has named April 17 – April 24, 2010, National Porphyria Awareness Week. I’m not usually psyched about so-called awareness campaigns for diseases, because the way I see it, we’re all afflicted with something, and we should all be aware of each other all the time as humans. Being well and getting good, solid, healthful care should be a given. I shouldn’t have to run- or walk- or jumprope- or bowl- or rock (in a chair)– for-a-cure. I shouldn’t have to don a rainbow’s worth of colors of rubber bracelets to let the world know that there are people who have diabetes or cervical cancer or ingrown toenails, or to remind us to all stay fit and feel our boobs and get prostate exams and notice irregular moles. We shouldn’t have to “fight” for our “cause” to “win” the “race” for money, just so we can all be healed and well. Please don’t think I’m an asshole. I’m not. (Insert “that depends on who you talk to” joke here.) I get it. People get diagnosed with a disease and they are overwhelmed with emotion and underwhelmed with information and they are scared. Or they’re told that their child has something terrible and probably won’t live, and they become obsessed to the core of their being to change that prognosis. God knows I would! I just think we shouldn’t be forced to waste our precious, valuable, life-giving energy on raising funds to save our lives, or our children’s lives, or our sisters and brothers and neighbors and best friends and grandmothers lives. Why can’t medical research be something that our community views as a necessity and happens for each individual citizen (and when I say citizen, I of course mean of the world.) Furthermore, why can’t we live in a non-toxic world? One where we’re not all poisoned by emissions, saturated fat, lawn fertilizers, plastics, autolyzed yeast extract, extra biggie super gulp Mountain Dew, clorox, marlboros, rGBH. Why can’t our children be fed nutritious, pure, fresh food when they go to school? Why aren’t we all so acutely familiar with, and aware of, our bodies that we don’t feel we have to rely on a dude with a white coat to tell us if something’s amiss?  Why can’t we embrace physical activity from the get-go and ride our bikes to the market, or live within walking distance of, I don’t know, anything? Why can’t real, true healthfulness be a given, a part of our Normal, and not just the sort of chatter we expect from extremist crunchies in birkenstocks?

Alas, it’s not my world we live in. Our “health” system does ABSOLUTELY, INDISPUTABLY revolve around $. And I must concede that if there’s hope for every single porphie to get a prompt and correct diagnoses, and receive thorough, valuable and proper care, then we’ll just have to appeal to the ones with the dollars. Turn porphyria profitable, right? And the way to do that is to make sure as many people as possible know about it.

So in honor of National Porphyria Awareness Week, I’m going to post every day during that week, and scheme up some goodies. I want to do a something or two during the week to “raise awareness,” but more so, I’d like to take the week to brainstorm, along with all you readers, about how to carry out an ongoing campaign that extends beyond the boundaries of a week and a foundation. (Not that I don’t appreciate the foundation and it’s existence.) Something meaningful that can take a tiny little step toward helping us all think of this disease as an ailing branch of the diseased tree of life… How should we better nourish the soil, and make the roots stronger?

I’m going to give a glimpse of the Daily Life of Sabrina during that week. You’ll get to read all the minutiae that normally doesn’t get posted, as my blog has thus far been reserved for my Big Moments. But I’d like to share all the little dirty details, and how I’m managing (or not) to cope with them. For instance, right now, the awful nerve pain in my neck and left hip is kicking in from sitting at this computer for too long, and I’m also super exhausted and need glucose. So I’m going to pop some vitamins with a glass of glucose water and try to stretch my legs before I plop on the sofa and let the wave of fatigue pass (hopefully.)

Cheers.

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8 responses

10 04 2010
Jan

Sabrina,
I applaud you and you willingness to tell it like it is. I am super pumped to hear about Porphyria Awareness Week (I hope I don’t spend it in an attack…wouldn’t that be ironic). I would love to help you in your quest to send this disease into the radar of the world. I’ll try to brainstorm some ideas. On a personal note: I took your advise and put my pee in the sun, documented the color change with pictures, and emailed them to my doctor. He said it looked like a positive test to him. He even did a porph screen on a sample I brought him when it was really dark and it showed elevated levels. However, the geneticist said that the levels were not elevated enough for a diagnosis and that the sample wasn’t done as a proper test. So here I am counting the days until I go into another attack when once again I’ll pee into a jug for 24 hours and hopefully this time it will be “official”. For now, I’m loving your blog and your story. Know that someone else is out there riding the same ride and cheering you on!

18 04 2010
Laurie Smith

Me too, Sabrina. (applaud you and your telling it like it is). I’ve seen “vampire piss” twice now. Going to gastroenterologist at Vanderbilt in Nashville, TN on May 5. Just an office visit to discuss all this. My general practitioner was floored when I mentioned my suspicions of AIP. This was the next step according to her. For years now I have been dealing with what I thought was IBS(C). But I don’t think that comes with “vampire piss” do you?

20 04 2010
Karen

Yep, I’m in category B. Preach it, sister!

I think I mentioned before that my 24h urine test was negative…all porphyrins within normal limits. Still suspicious because I don’t know what else would cause my pee to change color in the sun AND would cause purple stains where my pee hits the inside of the toilet rim. So I’m going to see a hematologist on Friday. Got the doc’s name from someone in the Yahoo porphyria group.

And…10 days ago, my husband told me he’s not sure if he wants to be married to me anymore. Told me he loved me as a friend and as the mother of his children but wasn’t sure he loved me “as a husband should love his wife.” It seems he is going through a midlife crisis. Perfect timing. I’m a wreck and just trying to keep it together enough to get through my days and be a decent mom to my 14- and 11-year-old daughters. It’s just me at home with them because he’s been living and working out of state five days a week since June 2009.

I want a diagnosis, but I don’t want to be alone when I get it. 😦

To Laurie — I also have had IBS for years, but then was diagnosed with ulcerative colitis in 2005. I have to wonder now if all of that is/was a result of porph damage to my GI nerves.

21 04 2010
myswelldisease

I’m sooo sorry you’re dealing with this right now! When I was diagnosed, my doctor told me “It’s very important that you avoid stress, as this is one of the most aggressive triggers for an attack..” and I thought, how in the WORLD am I supposed to do that? Stressful things happen!
Try to keep lots of glucose in you right now. NOW makes a good powdered glucose (dextrose) that you can order online or through a health food store, and you can stir the stuff into water or make lemonade with it. Whenever I feel pain coming on, I start chugging it. It’s usually very effective.
Keep your head up and try to find as much calm in the middle of the storm as possible. It’s absolutely necessary for your health right now.

20 04 2010
Laurie Smith

Yes, Karen, I’ve been wondering the same. I’ve been in “the chicken or the egg” mode. Ya know – which came first? Does the IBS(C) cause toxins to build up that set off the porphorins and thus the attacks? Or was it porph damage to nerves that caused the IBS(C) in the first place? Or maybe it is a viscious circle…

But, I’m sorry to hear about your husband. Do you think the illness frightens him?

21 04 2010
Karen

He hasn’t said that it frightens him, but of course that would probably be something he’d bottle up. I’m realizing now we need to talk more directly about the effect my health problems have had on us. Maybe he is more frightened of it than I think he is. But I think it has as much to do with the ulcerative colitis, but in an indirect way. After my diagnosis with that at the end of 2005, I became perhaps overly cautious about things I eat, drink, do, etc., living in fear of a flare. Since my UC is mild and pretty manageable, we haven’t had to really face it head-on as a “crisis” to deal with. And if I have porphyria, it’s been very mild too (which is one of the things that makes me wonder if it’s NOT porphyria, because I’m not sure if someone can have a mild case). So it’s like there are these shadows of the two diseases always lurking in the background and making me cautious — and THAT probably has as much to do with it as anything.

Between health problems and the recession, it’s been a rough few years. But this is the “for poorer” and “in sickness” part. I’m hoping he can come to terms with that reality and stick it out with me.

I think poor health has become a taboo in our society. In magazines and newspapers and on TV news/talk shows, the mentality is that we can all control our health by making the right choices. It seems like cancer is the only health issue that people can accept as being out of our control…and even then, they think that if we all run enough 5Ks and wear enough rubber bracelets, we can control that too. But the fact of the matter is that health problems do exist, and no, you can’t always control them. And with health problems being taboo, it just makes them that much harder to deal with.

21 04 2010
Karen

PS: Sabrina, sorry to hijack things with my philosophizing (is that a word?). And I don’t mean that we can’t control our health *at all*. I do believe in exercise, good diets, vitamins, and a non-toxic world! I just mean we can’t control it *completely*. And from my perspective, our society just doesn’t want to accept that fact of life (which may be why medical research isn’t viewed as a necessity that should benefit everyone…instead, the disease has to be elevated to “cause” status to get attention).

21 04 2010
myswelldisease

I agree with you completely. Feel free to hijack anytime! It’s why I’m here!

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