And she travels.

6 11 2009

I’ve had a pretty good couple of days. Just a week ago I was thinking that I’d never get to feeling better. But I learned some things from some other porphies that seemed to make a big difference. Yes, we call ourselves porphies. Or, at least, I call ourselves porphies and they all seem to go along with it, so…

Someone (a porphie,) found my blog and sent me to the Yahoo! Porphyria group. There’s seriously a Yahoo! group for anything and everything as it turns out. So I started posting about my experiences and asking these folks for advice, and I got a LOT of feedback. Turns out, I was “smoldering.” I wasn’t in an attack any longer, since I’d gotten to where I was sort of able to get on with life, but I hadn’t made it to “remission” either. I was still getting really nauseated and occasionally throwing up (OK, occasionally = 2 or 3 times a day,) and I was still having quite a bit of pain, especially at night. Oh, and I had this really awesome freak-out attack thing!

It was late in the night, and I’d had a full day. Some neighbors stopped by to chat and see how I was doing, and we ended up sitting up with them until midnight or so (crazy us!) I’d taken all my meds around 11, which was some morphine, a reglan, a cimetidine and a colace. By 12 I started feeling sorta wierd, so I told the neighbors to “stick a fork in me, ’cause I’m done!” (just like that,) and Eric and I headed off to bed. By the time I was in bed, I felt like my whole body was crawling out of itself. Huh? Yeah, I had kind of this creepy feeling all over, in my tummy and legs and back, a bit like when I used to get restless leg syndrome when I was pregnant, only this was worse and more horrible. I started shivering uncontrollably, and Eric got really freaked out. He kept trying to calm me down, but the more he felt the need to calm me, the more I knew he was freaking out, so I just got more anxious. We fed off each other in this way until I was in full-blown panic attack mode. I was rolling around on the bed, kind of crying and moaning, looking for a comfortable position,  while my insides itched, and I became increasingly convinced that I was going permanently insane. I’ve imagined being permanently insane before, and THIS was NOT how I pictured it. Not at all. I was NOT happy about this scenario one bit. I’d imagined permanent insanity to be an ignorant and lovely kind of thing, where I believed I was A-OK, and was truly fine with the world I’d created for myself to live in, and only everyone around me knew I was insane, but it wouldn’t matter because I was happy. But rolling around with crawling insides and  the body shakes is NOT a blissfully ignorant sort of insanity by any means, and in fact falls into the category of Movie Subject Matters I Avoid At All Costs. Eventually Eric rubbed my back until we both fell asleep, me with my arms wrapped around myself, laying belly-down, knees curled up under me with my butt in the air, baby-style, and he, propped up on one elbow, with his other hand on my back, his head bobbing around on his neck and drool running down his chin.

So that happened. And I kept feeling a little sicker everyday, and then I got the magic answer.

After posting my drug regimen on the Yahoo! board, people started flooding my inbox with freak-outs. Turns out, reglan is on the UNSAFE FOR PORPHYRIA Drug List (!) and I was taking it three times a day!!! Also, cimetidine is controversial, with some saying it completely controls their symptoms, but others saying it makes symptoms way worse. AND,  I was taking Miralax regularly to fix what the morphine breaks (my ability to have bowel movements, that is,) and THAT is also on the UNSAFE FOR PORPHYRIA Drug List.


(Miralax side story: It had been a couple days since a good, you know… So Eric told me I needed to take some Miralax in prune juice. I told him if I did, he had to as well. So he whipped up two cocktails, which we pretended were end-of-the-day apparetifs, and named them Purple Ass Shooters. He brought the drinks into bed for us to chug while we watched Arrested Development on Hulu, and we hemmed and hawed, biding our time before we actually drank the awful stuff, and then I dumped my whole. freaking. glass. Yep, all over the bed and Eric. To Eric’s great credit, he didn’t even get mad. He just got up, changed the sheets and himself, and made me another drink. And then we drank them.

Eric ran to the bathroom immediately upon waking up in the morning, and visited it two more times before even going to work. Lucky bastard.)

So I’ve now stopped the poisonous drugs, and low and behold, I’m feeling TONS better! I’m starting Day Number Three without nausea and hatred towards humanity! It’s so exciting! And I also get to chew my doctors out for not paying better attention to The List, which will be really satisfying.

And now, we leave this evening for Round Hill. We’re off to see Eric’s folks for his 30th birthday weekend. I’m a little concerned, because I’ve learned how many things are triggers for attacks, and I will encounter ALL of them on this trip. We have to take our own sheets, which have been laundered in Seventh Generation non-scented detergent, as the standard stuff is toxic for me. I’m taking my in-laws a gift basket full of all-natural non-scented house cleaners and dish soaps and stuff, since regular stuff is full of chemicals that can almost-kill me. (By the way, they’re not good for YOU, either, even if you DON’T have porphyria, and they’re certainly not good for our Mother Earth, so feel guilty and stop using them. They’re not going to clean or disinfect any better than a bottle of vinegar can, and you’re slowly poisoning yourself. And if you ever have a porphie guest in your home, you could instantly poison them, and don’t say you’ll never know a porphie, because you’re reading this, aren’t you, so you know me!)

If I have an attack while in Northern Virginia, I’ll have to go to a hospital where they don’t know anything about me or my disease, so it could be frustrating. I’ve started making my ER binder, which every good porphie has. It’s got all my drug info, basic info about the disease, treatment instructions, my docs’ contact info, instructions for not using perfumes or chemical cleaners around me, etc. etc. But the binder isn’t done yet, so I can’t get sick until it’s finished.

Then Wednesday I’m supposed to have my big important appointment at Johns Hopkins. Although, I’m getting skeptical as to whether or not this will be worth my while. We’ve asked the doctor to call me before the appointment, so I can be sure he actually knows how to treat porphyria, and I’m not going to be just a guinea pig for him, but he hasn’t called back yet. It’s MY money and my time, and I won’t be a happy camper if I get there and it’s another “Wow! You have porphyria! That’s amazing! I really don’t know anything about it because I’ve never seen it before, but this is FASCINATING!”

I’ll shove my fascinating foot right up his amazed ass, is what I’ll do.

So here’s to safe travels and continued “remission” and knowledgeable doctors and non-toxic hand soap this week! And don’t worry, I’m sure I’ll have plenty to write about, as my mother in law will be under the same roof as me for a week. Oh boy.





One response

6 11 2009


Thanks for sharing your journey. In 2000 I also took conflicting drugs, and it almost killed me. I have gone the other extreme, and unless I am in extreme need I go without medication. My son, who you know has ADHD, and I handle it without medication. Lots of healthy food, vitamins and no longer used toxic chemicals around the home. I works.

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