Pinot Noir and a soapbox.

23 10 2009

I had an appointment with Dr. Lawson yesterday. He’s a gastrointerologist. He’ll be managing the symptoms of my disease, from what I can tell. Although, I don’t really know or understand what he or any other doctor will be doing specifically. I just keep going to doctors and sitting in the office while they look at my chart and ask if I’m still taking my medications. Then when I pull out my list of questions, they sort of look at me blankly, and say “I’m not really sure. You’re going to have to ask an expert about that.” Excuse me for sounding quaint, but aren’t THEY supposed to be freaking experts? I know that they mean AIP experts, but I can’t help but get really frustrated with all these Dr. visits, especially since I’m plunking down a $40 co-pay every time. Today I go see my primary care physician to fill her in on everything, so this week, I’ll have handed over $120 in co-pays. I simply can’t afford to have this disease. Then again, I’m American, and therefor not allowed to be ill, unless I’m rich. And if any of you ever want to tell me that our country is not in need of serious healthcare reform and that we DON’T need a public option, you can take your little butt to another blog because I simply don’t want to hear it. Once Eric’s job ends in December, we’ll be without insurance. If we can’t find an affordable insurance to buy ourselves and we have ANY time lapse between the end of this policy and the start of another, I’ll not be eligible for coverage at all, due to it being a pre-existing condition and all. So if you’re rich enough to afford to get sick, or fortunate enough that your health does not sit on the very thin balance-beam that the insurance circus provides, and you therefor can’t look past your own very LUCKY life and realize that others DO need a more stable, honest and fair system for access to health care, good for you. And F you.

That’s my soapbox today. Probably not the last you’ll hear of it, rest assured.

So, I mentioned in the last post that I wasn’t feeling well. I’ve only gotten worse in the last couple of days, leading me to start back up on some of the meds. It’s something I really hate doing. My goal has been to get OFF them, because I firmly believe that they are a kind of poison in themselves, and can cause as many problems as they try to fix. I’ve never been one to enjoy drug use of any kind, so to have so many chemicals coursing through my bloodstream as I have has been a disgusting experience. But what can I do when I throw up everything I try to put down, and my husband finds me squirming in around in search of a comfy position because the pain is creeping back and I don’t want to admit it, and I see black spots and hit the ground hard when I try to stand up and walk?

I probably can’t go too much further in this blog without mentioning the great works of Dafna. Dafna is a long time friend. I’ve know her since I was 19. That’s 10 years you mathematicians, you. She’s always been the one I turn to when I need well-being advice, in any realm. She is a healer of mind, body and spirit. Over the years, her methods have evolved, and now she’s studying Traditional Chinese Medicine and is an acupuncturist in California. Ten months ago, when my health started to decline, it was the natural thing for me to call her and beg for help. She started giving me twice-a-week energy healing treatments, based on the TCM idea that energy just is, regardless of time or space. And gosh dang-it, it worked really really well. She cured a migraine in 20 minutes and stomach attack in 15. It was amazing. With her help, and my own intense work, and using western docs and other eastern traditions, I was able to get to a really healthy place.

Then all this struck. While Dafna is still involved, the level of pain and the volume of symptoms has been a bit much for us to tackle with TCM from one side of the continent to the other. I have no doubt that if she was here with me and we had the time to devote several hours daily to healing, we’d do some really significant work. And in a much safer way than with pharmaceuticals. But she’s not here. I would do anything to kidnap her and keep her in my purse, so I could pull her out whenever I started feeling the pinch in my stomach that tells me fun things are on their way. But I have a feeling she wouldn’t find that very fair, so I settle for now-and-then and try to get the most out of it, and do my own work. It takes a lot of dedication to sit down and meditate and move energy everyday, and someone needs to crack the whip on me. I’m spending more energy on self-loathing I think, letting all my resources spill out of my tear ducts. Ok. So I’m vowing that starting today, I will spend at least ten minutes twice a day focusing on healing thoughts, and thanking my body for getting me through this in one piece (rather than hating my body for betraying me.)

And, I’ve promised stories of purple pee. Purple pee purple pee.

Porphyria is known for making pee purple, especially during an attack. It also causes urinary retention during an attack, which meant that try as I might, I couldn’t pee to save my life for a few days there. At first they thought it was the drugs, so they cathed me for a day or two. (You know- they shoved a catheter, or a tube, up my pee-hole and left it there so my bladder could just drain itself, rather than having to do so on que.) The really lovely thing about it (as if having your urethra raped isn’t lovely,) is that they stick the collection bag on the side of the bed. Just dangling there, for all to see. And it’s see-through, of course, so the nurses can monitor the output hourly. This can hurt one’s pride enough, when one’s pee is normal. I mean, it was kinda like I was always on the toilet peeing, letting anyone who wanted to come in and walk around and talk to me do so, and then get to look at my urine. Awkward, right? But to top it off, my pee was purple. Except not really purple. They call it purple in all the literature about AIP, but what they really mean is deep burgandy, like a nice pinot noir. Bloody looking, really. So all who came to my room got to witness me peeing wine-colored pee. Awesome.

After a couple of days of the cath, they took it out to make me pee on my own. Having a cath for too long isn’t good for lots of reasons, like infections and losing your muscle tone, so I was down with trying. And once it was out, I did NOT want to go through the process of having it put back in, so I was bound and determined to sit on the potty and tinkle like big girl. But it wasn’t that easy. Eric would help me to the toilet, turn the water on in the sink full-blast to combat shy-bladder, close the door, and do a pee-pee dance for me out in the room. I’d hunch over on the toilet, sweating buckets, trying my best to relax, and beg my bladder to cooperate. Sometimes I have shy-bladder in a public restroom or something, so I’ve come up with a technique to deal with this: I take a deep breath, count one-two-three while I let the breath out, and on the three, relax and pee. Works every time. So I tried this, except, I’d get up to like 38, and have nothing. On special occasions I’d get out a little, but never all of it. And of course, the longer I went, the more painful my bladder would get, and they’d have to go ahead and cath me again. I think I watched them shove a total of 5 or 6 tubes into my urethra during those nine days.

On one of these occasions when they were cathing me, (graphic alert: Gonna get kinda gross here.) we watched this chunk shoot out into the clear bag, like it had been blocking things up. The nurse said it looked like a blood clot, which wouldn’t be uncommon due to the number of caths I’d had. For several days, we watched the bags fill up with wine and these little brown clots. They were still present after I was peeing on my own again. We’d see them floating around in the hat.

OK I know: I need to explain a couple of things. By we, I mean those who took interest in my pee. Which was more people than you’d think. There was me, obviously, and Eric, and my nurses, and and my doctors, and my dad. Yeah. My dad. He was fascinated. It wasn’t weird to me though. But it’s weird to me now that it wasn’t weird to me then. Anyway.

And by hat I mean the plastic container that looked like an upside-down hat that sat in the toilet. If you’ve ever been in the hospital, you’ve probably seen this. They use it to measure how much pee comes out, because if the correct amount isn’t produced, they freak out and do something about it. I’m not sure what.

So I had this awesome night-nurse sometimes named Mike. Eric and I loved him. He was our favorite. He spent way more time in my room than he had to, just to hang out. I fascinated him, he told me. Because I wasn’t a 75-year-old woman who’d had hip surgery or a 85 year old man with a knee replacement. I had an exotic disease, and I was young enough to still have all my teeth. So I was cool in terms of the the social strata of hospital patients. When he would come it to measure and dump my pee, it became our game to compare it to beer. That’s how we kept track of the color. Sometimes it was as black as a Guinness. Other times we’d get down to a nice amber, and it could any number of porters, lagers and stouts in between. And we’d count the little floaties.

So the floaties, the clots. Turns out NOT blood after all. I had mentioned to one of the doctors that I’d been having tons of these blood clots in my pee and that it was a little disconcerting. “Oh no,” he said, “that’s not blood. That’s the…” get this: “PORPHYRIA.”


Yep. He told me that was actually the disease making its way out of my body. It was the excess poisonous enzymes. They’d latch on to the lining of my bladder and slough it off. I know. Gag.

So eventually the pee got back to normal. But here’s the thing: Apparently, from what I’ve read, in an AIP patient, even during normal times NOT during an attack, if the urine is collected in a glass jar and sat in the sunlight, it will turn purple.

Soooooo going to try this. So here’s my question to you delicious readers: If I do this and it works, do you wanna see a picture? Or maybe purple pee is only cool to me and I’ve completely lost my sense of boundaries, and it’s totally inappropriate to offer to show you my excrement.

Lemme know.




5 responses

23 10 2009

I say include the photo!! The more squeamish readers have probably quit already!

24 10 2009

I agree – let’s see the pee.

By the way, I’m glad you manage to retain your sense of humour about this… I don’t think I could in your place. Keep it up!

28 10 2009

Your writing is really vivid and evocative. It sounds like it’s been a nightmare. Just wanted to give my experience with insurance–having switched jobs and insurance before, you can get a certificate of coverage from the first job that allows for pre-existing conditions that were covered under the first policy to be covered under your next one as long as you pick up another employee insurance policy within 60 days. Is his company too small for you to get Cobra coverage?

28 10 2009

His company is small, so we’re not sure what we’ll qualify for. We have to do some research to figure out what our options are. You know, later. Some other time. We’ll get to it when we’ve got time on our hands. Soon, I swear.

2 11 2009

Oh sabrina, I love your writing but then I remember this isn’t a “character” but a friend 😦 hang in there, we love u and I loved the photos of your pee pee! 🙂

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