TA-DA!

30 10 2009

Ladies and gentlemen,

I give you…

Purple Pee!

Number one: taken about 10 minutes after peeing. It had already darkened some, but not much. Sorry, I’d have taken an immediate picture, but was not fully prepared.

Number two: taken about 30 minutes post-pee. Getting darker. Iced tea.

Number three: about 50 minutes post-pee. Soda.

Numbers four and five: Just over an hour post-pee. This is probably about as dark as it’s gonna get today. It’s still out there, so if it gets darker, I’ll update.

Now, this is mild compared to what it was during the attack, but still. I bet YOUR pee won’t change colors! And see what I mean about it not really being purple? It’s more deep brown-red. Whatever. It’s not yellow. That’s the point.

Hope you’ve enjoyed the side show, folks. Donations can be placed in the jar.

*Disclaimer: Those of you who come to our home frequently know that we recycle glass jars by using them as drinking glasses. Don’t worry. The one used in this experiment will die its proper and due death in the recycling bin. You’ll never drink from it.

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Hyperventilating.

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.

Shit.





To medicate or not to medicate?

27 10 2009

I had weaned off most of my meds, which I THOUGHT was a good thing. So of course, it wasn’t. Turns out that all the nausea, vomiting and fatigue reared their ugly little heads again because I stopped the reglan and the cimetedine. {Side note: I’m refusing to capitalize drug names. While I realize they are proper nouns, I feel like it gives them too much heftiness. They’re not family names or deities. They’re drugs.} I’ve had to start them back up, and I don’t like it. I hatehatehate all this wretched shit coursing through my veins. It makes me feel drugged. And not in a whoa-man-I’m-seeing-some-awesome-lollipops-in-the-shape-of-penises-on-the-wall way. It’s more like a why-the-fuck-can’t-I-remember-what-day-it-is-and-where-are-my-socks-again? thing. I’m just dumb and numb. Dumb and numb dumb and numb dumb and numb. See? I’m being both right now.

The other thing I’ve hated about being drugged is the dreams. I’m terrified to fall asleep, which is why I have this stupid blog. This way I don’t have to. (Fall asleep.) My dreams are vivid and deep and real and often very terrifying. Not so much with gory bloody monster chases or anything, but with creepy and involved plots and themes. For instance, one night, I dreamt that for whatever reason, I was becoming involved with one of my exes again. I guess I’d split up with Eric, and it made sense to rekindle an old flame. But in the dream (and NOT in real life, which is why he will remain namless,) he was very controlling and scary and I felt trapped in the relationship. Mostly because he kept me locked up in his truck. When it came time to have dinner with his parents for the first time after getting back together, we went to his mom’s house after he got off work. She hadn’t gotten home from work yet, but had the crock pot going and left a note with instructions for us to get things ready (set the table, warm the rolls, etc.) According to Ex, he knew what was for dinner, and the mamma was apparently being really cool about the fact that I am now vegetarian and gluten-free, which I was nervous about, because this family is all about eating their animals. In fact, they take great pride in killing the animals they eat (and that’s in real life too. The boys are all hunters.) So on the list of instructions, she requested that we put the pot-pie in the oven and heat it up. I found the pie on the counter. The main ingredient: Black widow spiders. I acted cool, like I knew it was a delicacy. But I was crying like a baby on the inside. The dream got more and more gothic and twisted, and I woke up in a cold sweat.

I wake up in cold sweats really often. Even if the dreams aren’t particularly scary in content, they’re scary in that I feel as though I’m drowning in them. Like, it’s another world that I may not make it out of this time. It’s always a crap shoot. Will I wake up and return to real life or not? My dad’s theory is that the dreams are not in fact due to the drugs, but rather that they are just the first signs of the AIP symptoms of hallucinations, confusion and dementia. Somehow, he means this to be comforting. Somehow.

I don’t buy that, though. I know it’s probably the drugs doing it, which leaves me with a conundrum and a half. The meds make my days sorta tolerable. As long as I keep on top of the reglan, I only spend the first half of the day sick as a dog, spitting into plastic bags. And then I have my late afternoon and evening to spend wallowing in self-pity because I up-chucked my way through the first part of the day and I don’t have time to do anything productive, and then I usually take a nap or something and then, with my mom’s help, cook dinner, watch TV, wrestle Adelaide into bed, wait for my husband to get home from work, watch more TV, and type type type away. But without the reglan, I get Saturday:

Saturday I woke up in massive amounts of pain. I thought I’d be OK without morphine for 24 hours (ha!) so I didn’t take any before bed. So after kicking myself for that really awesome decision, I drugged up and hunkered down. I fell back to sleep eventually, woke up long enough to spit up some nothing, then drifted off again. Until 3:00 in the pm. When finally my mom coerced me to sit upright and try to get a little something into me, which did help, long enough to get me out of the bed and into the living room, and start medicating big time. All so that ten minutes later, I could throw up all those hard-earned pills.

Not my best day. And I’ve learned my lesson, thankyouverymuch. I’ll be taking the stupid drugs regularly until I find a shaman who heals me and I can write a book and go on tour and tell you that you’re all schmucks, duped by western medicine into keeping pharmaceutical CEOs rich. Which will absolutely happen, by the way. Don’t think it won’t.

And one more thing: I’m sure I’ll get emails with various interpretations of the black widow dream. I’m interested, but know this: While I believe ahundredpercent that dreams give us good information, I’m not so sure about these dreams. If there’s something I’m supposed to learn from them, I think it’s this: If I want to wake up ever again, don’t fall asleep. Wha-ha-ha-ha-haaaa! [Supposed to sound like a creepy echo laugh.]





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.”

WHAT THE HOLY HELL!

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.





Tales from Room 547.

22 10 2009

Today has been terrible. I’ve been fighting nausea and fatigue all day and I’m pretty much hateful right now. It wouldn’t be a good night to come over to my house. I’d probably glare at you and make you rub my feet and bring me food that I decide I can’t eat and then yell at you about it.

But who cares. I need to get on with the rest of the story, right? I left off with admission to the hospital, so that’s where I’ll pick up.

Saturday September 26. I’d spent several hours in the ER, doped up with a little dilaudid that was only sort of taking the edge off the pain. Luckily the ER doc that night figured that after two trips to Patient First and two trips to the ER in one week, I needed to be admitted so they could dig a little deeper to find out what was going on. So they wheeled me up to my new home: Room 547, on the orthopedic surgery ward. Just because.

My room was private, which was nice. I sat the bed up and tried to get my barings: There was a bathroom and window to my left, and the door to the hall and a curtain for privacy to my right. A nurse named Rose wrote on a white board in front of me “9-26-09.

NURSE: ROSE / CNM: JILL / GOALS FOR EXCELLENT CARE!: / 1. PAIN CO

NTROL / 2. COMFORT.” The way she wrote “excellent care” looked like “excell

ent carleel.” I bring this up because it’s actually more interesting than it seems. You see, in fact, the window and bathroom were ACTUALLY on my right, and the door and curtain my left. I was actually oriented backwards. Of course, I didn’t know it at the time, and it took me a while to figure it out. I think by the 5th day or so, I realized that I recalled starting off in a different room with a different setup, except that I didn’t remember being moved to a new room, and also, the room number was the same and the white board had the same “excellent carleel” on it.

Needless to say, I’m fuzzy on the exact happenings and order of events. But I’ll give my version.

Rose, a 55-60 year-old Latina woman with a thick accent, and my first of 20 or so nursed I would come to know and love, went on to set me up in my room. She took blood, which was an hourly event it seemed those first several days, (and not an EASY one by any means, considering I was so dehydrated that my body was, like, actively decaying. Once a needle reared its ugly little head, my blood vessels instantly turned to mush and collapsed, so the nurses had to poke me on average 5 times for one blood-draw session. Hell.) She weighed me, just by pushing a button on the fancy bed, but she kept saying “Fitty-fie. Fitty-fie? Fitty=fie.” Eric and I were like, “55 what? grams or something we don’t know? Not pounds. That doesn’t make sense.” And she would grin and shrug and say “Yes, pounds. No? You’re no fitty-fie?” Now, even though I was seeing backwards and hearing wah-wahs, I knew that was crazy talk. “Do I seriously LOOK 55 pounds Rose? Have you EVER met an adult of average height who weighed 55 pounds? Are you really a nurse?” “It must be broke, the bed. It not weighing. I put down 120. That what your papers say from when you came to ER last night.”

Whoa.

Before I got sick 2 weeks prior, I weighed myself at the Y, where I work out 2-4 times a week. I’d been doing really well with my workouts, lifting and running and lots of yoga, and I was looking fabulous and healthy and I was loving my trim, muscular figure. I stood on the scale that day out of curiosity, since I hadn’t checked in a while. Not because I was looking to lose weight or anything. I was a happy size 6 or so. I was about 132.

It dawned on me that 12 pounds in less than two weeks probably wasn’t healthy. I looked at my arms for the first time and I was frightened. Not only were they beginning to turn black and blue from all the poking, but my skin was stretched thinly across my bones, and my fingers looked like those of a near-death old lady, all boney and skinny. What was happening to me!?

(The weight loss only got worse over the next 9 days, since I didn’t eat a single bite of food for two weeks. We speculate I got down to 114 or less. I’ve been eating fairly well now for about 2 weeks, and am only back up to 119.)

I think the next couple of days came and went without me noticing much. I just let the dilaudid drip drip drip into my veins. I complied with the constant drawing of blood, and the blood pressure/pulse/temp checks every couple of hours, and the stream of doctors and nurses and nurses and doctors that were coming and going and going and coming. My IV stopped working at one point; popped out of my vein, threatening to infiltrate, so they had to re-do it, which was a nightmare. Took four different nurses trying to find a single vein in my body that would hold it. (I forgot the story before about having an infiltrated IV in the ER. Movie scenes are made of this stuff: I noticed the IV in my arm starting to bother me. I looked down at it, and it sorta looked swollen. I asked Eric if he thought it looked funny, and he said no and went back to his text message or whatever. Then I watched it grow. and grow. and grow. Before I knew it, it looked like a golf ball was stuck under my skin. And FELT like a golf ball was stuck under my skin. I started screaming and Eric looked up from his phone, and turned a wrong color. He sorta muttered and shot out of his seat and stood there for a second, frozen and watching it. “Do something!” I yelled. He snapped out of it, and ran out of the room yelling for a nurse. He kept running back in, checking the progress, his eyes popping out of his head, and running back out, yelling “uh…nurse? nurse? um, NURSE! HELP! HELP! SHIT! IT’S ABOUT TO BLOW! HURRY! HELP! and I was shouting “IT HURTS IT HURTS IT HURTS GET IT OUT GET IT OUT GET IT OUT! HELP!” and at last as they just sort of sauntered in and said “Oh. It’s infiltrated. Here. Let me get that for you.”)

So I slept when I was awake and was awake while I slept for the next three days. And the doctors all fought over me, each one with her or his own theory about what ailed me. The most widely accepted idea, though, was pancreatitis. The hospitalist, a sweet, soft-spoken woman with the very faintest of a European accent, came up with it, and told me the treatment was to not eat and manage the pain until it cleared itself up. Not eating was no problem, since I really just couldn’t. I had no interest, nor the ability to hold anything down. She ordered a clear-liquid diet for me, since they HAD to bring me food everyday, so for the first four days, my breakfast, lunch and dinner came on a tray and sat in my room for an hour until they were removed, untouched. And every meal was identical: A bowl of either beef broth or chicken broth, red jello, an apple, grape, or fruit punch juice cup, and a protein juice box thing. And I told them for four days that I was vegetarian and could not eat beef or chicken broth, nor jello, but that it didn’t really matter because I wasn’t going to ingest anything anyway. Finally on the fifth day they left off the jello and gave me vegetable broth. I attempted one sip of the broth, and it tasted like salt water. Yum.

Then Tuesday happened.

Oh Tuesday. The worst day I’ve ever spent on planet Earth.

A surgeon named Dr. Moore walked in my room. To this day, I’m not sure why. He’d been consulted in the first couple of days in case they needed to do exploratory surgery, but it was determined that since they were all going with the pancreatitis/virus theory, surgery wasn’t necessary. So really, at this stage of the game, he should have been signed of the case and gone on with his business. But I didn’t really have the wherewithal to know that, so when he loomed over my bed (this is still in the backwards-room period,) and told me it was time for me to come off the dilaudid, I didn’t know what to say. I panicked on the inside, but I didn’t want anyone thinking I was a junkie and had become terribly addicted to the drugs, so I just said, weakly, “Are you sure?” “Yeah. You’ve been on this stuff too long. You don’t need it anymore. Laying around is doing nothing for you. You need to get up and move around. I’ll order them to stop the dilauded and give you a little ibuprofen, and tell them to get you up and walk you around. Let’s get you outta here tomorrow.”

I was stricken with the utmost terror. I KNEW that my pain was in it’s prime, and I could only lay there and do nothing (so I thought at the time,) while they cut me off from the only thing that was saving me. Within an hour, I was screaming, twisting, writhing, begging, pleading, grabbing, sobbing, hyperventilating. I wanted to be in a coma. I can’t say I never wanted to just die, actually. Eric was absolutely beside himself. He begged the nurses to do something, but their hands were tied. They gave me my tylenol or whatever, and stayed out of my room, I think so they didn’t have to face me and witness the horror. Eric eventually convinced them to call Dr. Moore to tell him that it was a huge mistake and get me back on some drugs, but he was unreachable. Right after he left my room, he’d run off to lock himself up in surgery. So for several hours, Eric could only watch and hold my hand, as I faced the most horrible torture I could never have imagined.

This was also when I started noticing the nerve pain. Not only was my gut being shredded to pieces by a tree grinder, as if that wasn’t enough for one little body to experience, but now my legs and arms and back had started to prickle and burn. I remember it starting gradually; I noticed it first when I sat on the toilet. The backs of my legs were really sensitive. Over a brief period of time, it grew more and more intense, until I couldn’t stand for anything to touch them. I was face down on the bed, hoisted onto my knees, trying to touch as little skin to the bed or sheets as possible. The only thing I had to help me deal with all of this pain was my Bradley method training, from when I gave birth to Adelaide. So Eric talked me through some guided meditations, and with every ounce of strength I had (which, as you can imagine, wasn’t a whole hell of a lot,) I tried to lay quietly and go to another place. I had to. I couldn’t be there. It was too much for ANYONE to handle. Especially someone who’d been in terrible pain for two weeks.

When they finally got Dr. Moore on the phone and told him that the headache pill he’d let me have wasn’t doing the trick, and that they’d never experienced a patient in so much pain before, his response? Get this. “Get her up and make her walk around. She needs to snap out of it.”

Eric’s rage broke loose, and he stormed from the room, yelling threats and beating his fists on the counter. I heard a nurse yell something about calling for security. Eric had paged my dad by then, who came rushing in. Somehow he managed to calm Eric a little, and after one look at me, he took charge of the situation. (May all the gods and goddesses bless him.) Calls were made. People were contacted. And then the Palliative Care Nurse was there to rescue me.

If you’re not familiar with hospital structure, Palliative Care is the pain management department. Those doctors and nurses specialize in pain management specifically, and often treat patients who are dying, who have intense and unique pain. When Jennifer, my angel, came to my room, all I could do was breathlessly and voicelessly ask her through my tears, “Are you here to help me? Please help me? Please? I can’t anymore. I’m giving up.” She asked me what my pain level was on a scale of one to ten. “Twelve.” She assured me that she was going to help me, and she didn’t break her promise. She put me on a continuous dilaudid drip, with a pump (the button I could hold and give myself boosts when I needed it every few minutes,) along with a host of other types of medications to deal with the nerve pain and the muscle cramps and the sleeplessness, etc. etc. I couldn’t thank her enough. I still think my next born has to be named Jennifer Palliative Care Sasser Strom, boy or girl.

For the first time since I’d arrived, I was close to comfortable. My pain was down to a 5 or so, which I could handle. I was able to actually relax muscles I hadn’t realized I was tensing, and I finally got some much needed rest. Now, the AMOUNTS of narcotics it took to get me there had everyone terrified. The nursing staff kept calling to double-check the dosages, because they’d never administered so much before. Jennifer explained that pain meds work in balance with pain. If you have the pain to counter the meds, you’ll tolerate more meds. In other words, she said, if Eric, a healthy man of 175 pounds or so, not in pain, were to get that amount of dilaudid, his heart would stop. Mine only slowed to a little closer to a normal and healthy pulse.

So enough about the pain. Let’s get to the good stuff. The purple pee. The medicine sweat. The giant tabs of glucose and the bright-blue liquid morphine in a syringe I had to swallow. The standing up and fainting. The inability to urinate for days on end, and what Eric and I would do to try to make it happen. Falling off the potty seat and hitting my head. It’s all so good. But I’m all so tired right now. Like I said before, it’s been a bad day. I wanna puke a little, but also wanna keep my stew in me in the hopes it’ll stick to my boney little ass. I also want to toss my wired daughter out the window instead of doing the bedtime fight. (Did I just say that- or type that- outloud?) I’m just so exhausted and hurty and yucky and, well, ya know, diseased. I need to go lay in bed so I can’t sleep for the next 6 hours. It’ll be good for me.

…More to come later. I’ll get to the good, gory details about body fluids and stuff very soon, I promise. I know you’re all on the edge of your seats, right?





mornings used to be so good…

20 10 2009

But now they suck.

Since I’ve come home from the hospital, I wake up every morning with something or another hurting, and a bladder that’s so full I look four months pregnant. And every morning, as my consciousness slowly lets me know that I’m about to piss myself, I hop up and bolt for the bathroom, and BAM! The low blood pressure hits, and I’m forced to clutch the nearest stable object, like my dresser or the door frame, as the black dots floating in front of my eyes take over and leave me in complete darkness and my head feels like it’s floating off my body. I stand still and do my best not to fall (although sometimes my knees do crumble, and I wilt into a pathetic quivering mass on the floor,) and wait for my head to reattach itself, and for my vision and hearing to slowly return, and then I remember I’m almost leaking pee. After a good 90 second torrential downpour of urinary release, I stumble into the living room in search of the medicine that will make the misery go away. My stomach usually is in knots, my bladder aches from the trauma of being full beyond capacity, my neck and back can’t really move, my throat hurts, my whole body sort of shudders with yuck, and I fall into a deep despair, convinced I’ll never be well again. I pop my morphine and huddle down on the couch and wait for it to kick in. Usually after an hour or so, I forget that I was ever in pain, and everything is fine again.

Alas, some mornings are more complicated than others. For instance, I may awaken with a thirty-five pound three-year-old we call Adelaide draped over my bladder, and those mornings, I’m absolutely sure that THIS is the morning that my bladder has indeed ripped open and I’ll die from urine poisoning my internal organs. Sometimes, the three-year-old will insist that SHE gets to go potty FIRST (AAAHHHHH!!!) in which case I hold back my tears while I help her onto the toilet and allow her to do her stuff, and cheer her on because she’s such a big girl, but really I want to yank her off and throw her into the bathtub so I can let it loose. But I try to be a good mom, so I don’t. I wait. Sometimes, when my Eric hasn’t rolled out of bed before me (OK, this is almost always,) the dog is also at my feet barking to be fed and let out, and I beg her to pleasepleaseplease, just this once, feed herself. But she never does.

Anyway, this morning was no different. Made worse, actually, by the fact that I slept all night with my arms above my head {Sidenote: I’ve developed this odd habit since I’ve been home from the hospital of waking up in the middle of the night, not being able to get back to sleep, and thus reaching up to twirl my hair and tie it in knots and braid it and stuff. This will go on for hours. I know. I’m SO not OK.} so my shoulder and back and neck were seriously throbbing and sort of numb for a few hours. So I started my morphine routine and set about busying myself until the lovely narcotic nestled into my deepest nerve endings. I helped my Eric decide what to wear to work, played with Adelaide, showered, and made bird feeders out of pinecones, organic peanut butter, and leftover movie popcorn. My mom showed up as Eric left for work, to babysit me (I’ll explain that later,) and just as we sat down for lunch, I got a call from Dr. Atienza’s office. He’s the hematologist who saw me in the hospital, and will be monitoring the “heme-” part of my care from here on out. The office manager informed the that I missed my 11 am appointment (TOTALLY thought it was scheduled for tomorrow, crap crap crap!) but they could fit me in if I left my house immediately (phew.)

The outcome of my visit with Dr. Atienza is as follows: My blood tests came back. Only type 1 and 3 Acute Intermittent Porphyrias show up positive in the blood test, and type 2 won’t show up positive. It will only show up positive in a super complicated and hard-to-get urine test. My blood test showed a negative result, thereby confirming that it’s definitely type 2.

A: I had no idea there were 3 types of AIP. Nobody told me that.

B: I’m not completely sure I understand how a negative test confirms that I DO have something, but Dr. Atienza is a hematologist, and I’m just a glorified administrative assistant, so he wins and I will believe him.

C: I need to explain what the hell I’m talking about.

OK. Ready for this?

So, on the morning of Wednesday, September 16, I woke up feeling icky. It wasn’t long before I was shimmying to the potty with the kind of diarrhea that is self-propelled and on it’s own timer, unwilling to wait for you to be in the right place. It just sort of gives a 10 second warning-gurgle in the stomach, and next thing ya know, it’s a firey, unholy explosion of what-the-hell!, and you’re stuck in the bathroom for the next 120 pages of the Lands End catalog on the back of the toilet, and your ass and legs are numb and you really want to go crawl back to bed, but you’re terrified that as soon as you do, it’ll strike again, and this time you won’t be so lucky and you’ll end up shitting your pants, and you’ll have to live that down forever, so you just stay put for another hour or so. I had some nausea too, but never threw up, so I chalked it up to a little bug, sipped some tea for the rest of the afternoon (after I was good and sure that the expulsion sessions were done,) and slurped some applesauce or something, and called out of work. Oh. Work. That’s kind of an important detail to this.

I am the Ballet Manager for the Kentucky Kid’s Ballet. Except it’s not a ballet, and it’s not in Kentucky. I’m trying to be couth here, and not reveal the actual identity of the organization. So for this blog, it will be the KKB. I started the job just over a year ago. My duties (he-he! I said duties!) are to round up the kiddos and get them to the right place at the right time, keep track of their attendance and supplies and uniforms, do all the hard work at all the gigs, deal with angry parents, organize volunteers… Pretty much everything short of actually singing, er, I mean, dancing, for them. The kids are in session during the school year, so summers are low-key, with some office work and stuff, but no interaction with the kids. This year the season started the weekend of Sept. 11, so I welcomed the kids back and hugged and shook hands and may as well have licked each and every 120 of their warm, germy little bodies for 4 days straight. And also, things were really stressful, because my boss was really coming down hard on me about a bunch of crap, and I was getting so bent out of shape that I had a physical reaction everytime I saw another email from her.

Back to the diarrhea: I figured I was stressed and picked up a bug from one or 50 of the kiddos. I usually only work the Monday and Tuesday night rehearsals, and my assistant works the Wednesday night rehearsals, but since this was orientation I was supposed to give my “Here’s the Rules, Stick to ’em Or Else” Orientation Welcome Back Speach. But I called in and told my other boss, the nice one, that unless she wanted me sharting all over the new parents, I should probably stay home. So I did, and by the next morning, I felt a tad better. A little weak maybe, but that’s to be expected after blowing every ounce of food consumed in the last week out of one’s ass in a matter of hours.

I go about my week, but not feeling “on.” Rather “off,” actually, as I was sorta nauseated and weak and fatigued and crampy… leading my bestie AND myself convinced that pregnancy must certainly be the culprit. So I peed on some sticks, but they said no. On Saturday I held a yard sale and was up way before the buttcrack of dawn even peeked over the top of nighttime’s pants, and by 2 in the afternoon, realized I hadn’t eaten a thing, nor did I want to, and I had lots of this weird, crampy pain in my abdomen. I finally broke down and told my mom the pregnancy theory, and peed on some more sticks. Still got minus signs.

The following Monday night, I struggled my way through work. Still not eating, I was getting really tired at this point, and this pain was getting even worse, and I swear, just the sound of my boss’s voice was making me throw up in my mouth a little. I was making more mistakes, fueling her fire even more, which led her to obnoxiously reprimand me EVEN MORE, in turn making me MORE stressed out, which was making me feel physically worse, which then made me mess more shit up. Vicious cycle, right?

By Tuesday morning I’d had enough, and Eric drove me to Patient First. A blood test confirmed that in fact there was no baby on board, and the doc diagnosed me with a virus. “In someone young and healthy like you,” he said, “I’d expect this thing to only last a day or so, so it’s a little abnormal that you’ve felt sick for a week now. But sometimes we see this thing last 7 to 10 days. So rest up. You’ll be fine.” He gave me orders to stay home from work that day (wheeee!) and gave me some dietary instructions. He also prescribed naprocin {let me go ahead and say now that I will try my best to spell drug names correctly but goodlordcomeon. Just get the idea, and don’t bother to tell me every time I spell some medical terminology thing wrong because I won’t care. Thanks.} and some nausea medication. I went home to sleep, thinking I’d be fine.

Wrong. Instead, I started throwing up anything that even pretended to enter my mouth, and was in so much pain that I’d started to moan and groan a bit. The painkiller prescribed seemed to taunt the pain. Egg it on. Dare it. And everytime I took the nausea pill, I threw up violently. At that point, ERIC had had enough, and decided I need to go back to Patient First on Thursday. I saw a different doc this time. He stuck with the virus theory, but admitted that it must be worse than they originally thought. No shit. So he gave me a shot of nausea stuff, along with some stronger painkiller, like darvacet or something. All it did was make my ass hurt, and I threw up the whole car ride home. The doc had recommended vicodin, which we had in the house from Eric’s last half-completed root canal, so I popped that all night, and eventually drugged myself to sleep, but still hurting.

Friday the 25th: The moaning and groaning was more like thrashing and screaming. My dad, who has been a hospital chaplain at Maryview Hospital for a million years (actually 25 or something,) was the fed up one this time, and threw me in his truck to haul me off to the Maryview ER. Not quite that harshly, but anyhow, I found myself screaming on an exam table trying to explain what was going on, while they did the abdominal pain routine: Shove on my stomach a bunch, stick their fingers in my vagina and my asshole, make me drink that nasty contrast shit in case they want to to a CT, get Xrays, etc. etc. etc., all the while holding off on relieving my pain, so they can “figure it out.” When I finally grabbed one of them by the collar and threatened to bite him if he didn’t stop the pain soon, they started in with the morphine. I’d told them that the darvacet did nothing, but I also to them not to go too strong, because I have a tendency to get all panicky with strong narcotics floating through my system. Shit, sometimes I get nervous after I drink valerian tea. So they started off with 2 mg of morphine. It wasn’t long before I was telling them to go ahead and try another couple of mg, because I wasn’t feeling it yet. Then, maybe let’s try 4 more. They kept upping the dosage and giving me more and more, until finally they told me they’d given me the limit, and they were uncomfortable giving me anymore, lest my heart stop.

Ultimately, they came up with nothing. They decided it must be a really, really, REALLY bad virus, and sent me home with more instructions to wait it out.

That proved impossible real quick.

Saturday, dad was driving me back to the ER. I was beyond sane at this stage of the game. I’d turned into an animal. Like a desparate rabit caught in a trap, tired and hurting and bleeding and dying, willing to chew through her own leg to get out of the trap and make the pain stop. Primordial instinct took over me. I no longer could care about panic attacks or wanting to remain clear-headed so they didn’t do anything stupid to me… I only cared about stopping the pain that was ripping my gut apart. I felt as though fire was consuming my intestines, and my abdominal muscles were connected to an electric current that was seizing them against my will. I kept thinking that if only I could find the right position, twist the right way, lay on the right side, it would let up a little, and that’s all I wanted, so desperately: for it to just let up a little. I was so dag-gum tired, but I couldn’t rest, and it was the worst kind of torture. It was so much more intense than labor and childbirth, and much uglier. It felt like an evil and dark kind of pain. I begged for the strongest drug they could possibly give me, and I think they could smell my anguish, and took pitty. They started pumping dilauded into my veins. Bless them. Each injection would take over my cells, and send a wave of momentary relief through me. I’d relax for just a brief period, enough to gather my resolve, and reach far, far, down for the most deeply buried fight I had left, and brace myself for the next grip of pain.

They admitted me to the hospital that night. It was no joke by then, and they knew it. I sensed that they were worried.

Eric called work to let them know I wouldn’t be there Monday, since they were holding me in the hospital overnight, and I’d probably need my rest still on Monday. Little did we know, I’d stay in the hospital for 9 days.

To be continued…





here it goes…

18 10 2009

Well, I’ve done it. I’ve joined the ranks of millions. I jumped on the blogwagon.

I’ve tossed the idea around a time or two before. The hippest of my friends, or at least the ones whose lives and styles and knowledge of pop culture and “in-ness” I most covet, you see, all have blogs, and have for years. And I want to be just like them. Desperately. But I’ve inevitably come to terms with the fact that I have nothing of any real interest to say.

I’m a mom to a three-year-old girl, and, though she’s RIDICULOUS cute and smarter than you’ll ever be, no one besides her dad and I and her four adoring grandparents really care. Mom-blogs abound, and even I don’t find them all that interesting.

I’m also a musician, sort of. But I only have the time and ability to do any music stuff half-ass these days, and, again, no one cares. Nor should they.

I’m a married homeowner. B-O-R-I-N-G.

So I gave up on the idea of blogging based on the fact that, while I tend to find my life interesting enough, I seriously doubted the world had any need to listen to or read about how I spent my very average days.

Until Now.

Because now, I have a rare disease. I mean, I’ve had it all along, but I didn’t know it until two weeks ago. And when I say rare, I mean RARE. Rarer than a straight male ballet dancer. Rarer than a steak that still moos. Rarer than an LA snow day.

You get the idea.

So anyway, I think this qualifies as interesting enough to tell the internet all about, and besides, NOT whining to anyone about it is driving me nuts. Whether I end up typing to nobody but my MacBook, or to a handful of random readers, or the best I can hope for: all of my good friends and acquaintances and my mailman and barista and the lady who drives the trash truck in my neighborhood and has been known to cuss me out a time or two when I’ve questioned her can-tipping skills (but seriously, she dumps half the trash back onto the street, and how hard can it really be,) it will serve as a therapeutic outlet for me. Also, it will hopefully keep my marriage intact, since my poor Eric has to be the only set of ears for now who I can talk to about my purple pee and retell the story about how much fucking dilaudid I was on in the hospital, and freak out about the possibility of developing hallucinations and dementia as the disease progresses.

But I’ll get to all that later. My plan is this: Over the next week or so, I’ll catch you up on the happenings from the last several weeks, and give you lots of background info so you have a good, solid foundation with which to comprehend my current and future activities. You may feel free to analyze the shit out of me and tell me just how crazy I am. Sound good?

Good. So let’s get started.