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…

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5 responses

20 10 2009
Morgan V

I say let the dog and Adie pee on the floor and make Eric clean it up.

20 10 2009
Rosemary

Sabrina-Welcome to the blogosphere. I am sorry for the circumstances that have brought you here. Thanks for sharing your very personal story. Keep blogging, keep venting. I am reading, I am listening, and I am laughing. Sad, but laughing. You are taking a really shitty situation (bad pun somewhat intended) and managing to write about it in a very humorous way. I appreciate your open, no-bullshit style. Hang in there! (Especially when Adelaide wants to pee first!! OMG! You ARE a good Mom! Though I think I might race her there! :-D)

21 10 2009
John

I would have peed first. Kids shmids.

4 10 2012
Melissa

Hi Sabrina, I was just diagnosed with Porphyria and I live near you in Virginia Beach. Who is the best Dr to see? Dr Laplace?

4 10 2012
myswelldisease

Yes,yes,yes. Dr. LaPlace is the best and has lots of porphy experience and is very proactive. Please tell her I sent you 🙂 sorry I haven’t blogged in a loooong time. I have some thoughts and ideas about comin back in the near future. Lots has happened…

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