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?

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3 responses

22 10 2009
Nancy Fritts

Sabrina, I don’t really know what to say. I’m totally mesmerized by your writing and so glad your putting pen to paper about this horrible disease! Maybe some day (even 10 years from now) you’ll write a book and be able to let many others who think they are alone with this illness find hope and inspiration through the words you write. Know you and your family are still in my prayers and will continue to follow your story and your remission from this cruel disease!

22 10 2009
Nancy Fritts

I do!!n’t know if my comment went through or not. I have been following your story and am mezmerized by your gift of writing. I am so glad you are putting pen to paper to tell of this horrible disease. Maybe some day you will write a book and let others who think they are alone in their pain and helplessness that you too have been there. I look forward to reading more about your journey and finally a remission from this heinous disease. You continue to be in my prayers

20 09 2012
tracy

This blog made me cry. I know its years later since the time you were in that room. I have AIP and few understand .even those close to me. They don’t understand how the pain body aches nausea bowl issues etc can just hit me out of no where. “It must be something I’m doing” or the famous ” are you sure you just don’t like the drugs?” (that one gets me the most)
My mom and g randma died from AIP . And I have recurring attacks. At least 6 a year. However doc send me home too soon and a week later Im right back in. My boyfriend doesn’t even come to the hospital with me anymore “I can’t sit there anymore” he complains. As if its east for me

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