Release.

17 02 2015

Dear Sabrina,
You, my friend, have a lot on your plate. You are overwhelmed and stretched too thin. You’re exhausted and ill. You’re in pain. So take it slow, and keep it simple! You were doing really well there, for a while, with the whole letting-yourself-off-the-hook thing, especially when it came to tidiness and housework and everyday BS! What happened? True, you moved into your inlaws giant, cold house, against your will and wishes, because you HAD to when Eric lost his job. Again. And so now, you cohabit with a woman who’s found that old hook you discarded months ago, polished it up a little, and jammed it in, right about at the third rib or so to hang you back up. But WHO GIVES A SHIT IF SHE’S PISSED EVERYDAY ABOUT EVERYTHING! You’ll never change this, or her. You’ll never please her, Eric will never please her, SHE WILL NEVER BE PLEASED, Sabrina. And she and they will never listen, like, LISTEN-listen, and the only form of communication in this house will always be via a door: how loudly it’s slammed. Their disfunction isn’t your disfunction, Sabrina. Don’t take it on as your own. Just take deep breaths, remember that you’re smart and funny and brilliantly witty, and let it go. Tackle your to-do lists in order of what YOU feel is important, not the order of importance dictated by the other people miserably bouncing around this giant house. Be kind, courteous, and do your best to respect the shared space. If they had true love, compassion and empathy in their hearts, they would understand that the lump in your right breast takes priority over the kitchen counters being schmucky. Make that mammo appointment, sweet self! And they’d get it that the abnormal PAP is more worrisome than the girls’ bedroom staying picked up to impossible standards 24-7. Schedule your follow-up PAP, sweet self! They should totally know that chronic fatigue, constant pain, and impossibly uncomfortable constipation keeps you from being able to scrub the bathroom more than twice a week. Make your gastro appointment, sweet self! Sabrina, you have permission to remove the hook, once again, from your side and bat it away. Focus on what you CAN. Focus on finding comfort, joy, grace and gifts. Focus on breathing deeper, stretching longer, walking further and standing straighter. Focus on hugging and kissing and tickling and hand-holding. Focus on making appointments with specialists and getting the kids to the eye doctor and your husband to the dentist and the family to the chiropractor. Focus on staying as happy, healthy and full of life as you possibly can. The people surrounding you are full of their own miseries, and the less miserable you become, Sabrina, the more miserable they will want to make you. They want your company. They don’t want to accept responsibility for their own bubbles, so they’re gonna try to pop yours. Protect your sweet girls and your sweet self from this, Sabrina. Your life depends on it.
Love ALWAYS, your Sweet Self.💋❌⭕️❌⭕️

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Port-o-call

26 03 2010

I know, I know. I’m really sorry, I am. But here’s the thing. After two attempts at writing this post, wordpress erased it all, which made me want to poke my eyeballs out. Writing it once was tough, then having to write the whole thing again was exhausting, so after that got dumped, I didn’t have it in me to do it again for a while. Plus, I have to admit, I got a little sick and tired of being sick and tired. I needed a break from thinking about porphyria. I took the “SICK” label off my sleeve and left it in the drawer for a while.

But a few of you have emailed me. prodding me for the rest of the story, and I owe it to you. I really do. So, (as I slap the label back on my sleeve,) here it is.

I left off with the hemetin infusions. Good for my attack, bad for my arms. And since the plan was for me to start getting the infusions once a week for the rest of my life (or the rest of porphyria’s life, whichever comes first,) there needed to be a better way to get the hemetin into me than forcing it into my unwilling, hardened, bruised veins. My biceps had already puffed up into warm, firm masses that would make Popeye jealous. So the nurses told me how to fix the problem. A port.

What’s a port, you say? That’s what I said too.

So, a port, or a mediport, or a portacath, or a Totally Implantable Venous Access System, or TIVAS, is like one’s very own permanant little IV that gets to go everywhere said person goes. The port part is surgically implanted under the skin, with an attached catheter that is surgically inserted into an artery in the neck. When it’s time to infuse, a nurse pokes a little needle through the skin into the port and the IV runs directly into it, and the contents of the IV are then run through the catheter directly into the artery. The advantage is that this way, the nurse doesn’t have to find a usable vein to insert an IV into each time, AND, since it’s being dumped into a big ol’ artery, rather than a tiny litte arm vein, the thick hemetin flows right on in, pain-free. Its like one of those beer-holding helmets with tubes: no need to waste time picking up the can to take sips. Just let gravity do the work and deliver it directly to your stomach.

The kind suggested for me was the Bard Power Port. The nurses brought one out of the back room that Bard had kindly provided for educational purposes. It’s a purple little thing. A triangle box about the diameter of a silver dollar and the thickness of, I don’t know, about a seven dollar stack of those silver dollars. Maybe more like five. How thick are silver dollars? Anyway, on the top of the triangle, there’s a little silicone soft top, with three little bumps on it, that work kind of like brail, so that when a nurse is trying to access it, she or he can feel for the little bumps, and aim for the middle.

I held it, and it made me want to throw up.

But the nurses needed only to turn my attention to the searing pain in my arm, and I was convinced.

They also arranged for me to meet Heather. Heather is another AIP porphie. Here’s that story:

When I went to my PCP, Dr. Lea, to tell her that an attack was coming on, she told me that she’d just recently spoken with a collegue, a hematologist, Dr. Bremer, who said she was currently treating an AIP patient. Her patient was getting weekly maintenance infusions, so Dr. Bremer had gotten the whole set-up down pat. She told Dr. Lea to send me to her, especially if I had an attack, because she already had access to the hemetin (which can be difficult to get a hold of sometimes.) So the timing was perfect, and I was absolutely THRILLED to find a hematologist who’d be proactive in my treatment. And, of course, I was super interested in this other porphie! Imagine that! Another one, right here in town! The odds are not in favor of that AT ALL.

So when I showed up at the infusion center at Norfolk Gen., you can imagine that the nurses sort of looked at me like I had just pulled a rabbit out of a hat. “ANOTHER porphyria patient?” they’d said. “Unebelievable.” They quickly got to work scheming. They were like little matchmakers. Like moms who’d stumbled across a real nice, wholesome single lady that they just HAD to make sure their 35 year old son-who-lives-at-home-with-no-real-promise-for-a-bright-future met. They were just so excited for us to get together. I’d learn a lot from her, they’d told me. She’d been doing this for a while. And she had a port, so I could see hers. (Yippee.)

So my blind date was all set up. When I went to the infusion center for my third day of treatment, I glanced around at the chairs. I was really hoping the elderly lady coughing up all sorts of phlegmy spittle wasn’t Heather. Or the lady laying unconcious in one of the beds, who I’m pretty sure had peed herself.

But then I saw her: A young, “healthy” looking gal, looking kind of bored. Like she’d been doing this for a while. She saw me at the same time, and I sat in the chair next to her. We exchanged hellos, and I was tickled pink. I determined just from the tone of her “Hi” that I liked her.

I learned that she is 25, and moved here in October from some northern snow hell of New York State. (No offense to NY, but the thought of being buried in snow 8 months of the year truly is my personal hell.) She’d been diagnosed with AIP when she was 16 or something, and had been having a really, really rough time with the disease since. She told me that about 7 years ago she had her first port implanted. It lasted a little while, but then got clogged, so she’d had to have it replaced. The second one was put in too loosely and would flip around (gag.) so she had that one replaced as well. So she’s now on her third. She showed me the scar, which looked kinda substantial to me, but I had to take into account that it’d been cut on a few times. She told me that the skin over it just turned into numb scar tissue, so she didn’t even feel the stick anymore. She’s been having weekly infusions for years. If she misses one, or even goes a day or two over 7 between infusions, she starts having an attack.

Phew. Seeing the scar and watching the thing get poked and hearing about the mishaps made me think twice about getting the port. And then they spent 20 minutes trying to get a good IV in. And then my arm was on fire for hours. And I told the nurses to schedule my surgery.

The very next day, I received a call from a vascular specialists’ office to schedule my surgery time. She asked if I could come in the NEXT day, Friday, and have it done. I panicked. That just seemed a little fast for me. I felt like I needed to, I don’t know, at least tell my friends and family that I was going under the knife, and maybe arrange for someone to watch my kid. And I asked if she or the doctor was aware that I had porphyria and therefor could not be given just any drugs, and that many anesthetics are unsafe for porphies and that all meds needed to be checked before they were administered. She paused. She said it was probably best to not schedule it for tomorrow, and that she’d talk to the doctor and get back to me.

After several phone calls and reschedules, I was finally given an appointment for Tuesday morning at VA Beach Gen. Usually the procedure would be done in the specialist’s own outpatient center, but because of an issue with my insurance, they’d had to schedule me in an actual hospital. Which turned out to be a good thing.

I was told that my surgery was scheduled for 8 AM, so I needed to arrive by 6. Holy hell. So Eric and I set our alarms for 4 AM, and then, just to make things fun, I started having withdrawal from the morphine. I’d gone on it for about 8 days during my attack, but I wanted to come off it quickly so I wouldn’t have withdrawal symptoms again. So much for that. I was awake all. night. long. I really don’t think I ever slept at all. I had the heebie-jeebies so bad that my entire body thrashed and jerked for hours. I was sweating and itching, and my mind was racing. And just when I felt like I was calming down a little, both of our phone alarms screamed at us.

So in my zombie state, I walked myself into the hospital at 5:45 that Tuesday morning. I was actually looking forward to the surgery, because it meant I could sleep. Really deeply. As I waited to be called back to the pre-op room, a nurse informed me that I needed to have some preliminary blood work done. I froze. You see, I’d already had a little pep talk with my arms, telling them that they only needed to give me one more good stick. For the IV they’d have to use to put me under, of course. And then my lovely arms were free to heal and relax, and once again let blood circulate freely through them. I was not, however, counting on TWO sticks that morning. And with my lack of sleep, I couldn’t take it. I cried the whole way down the hall, and I sat in the chair in the lab and sobbed. The lab tech taking my blood looked really, really sorry, and really, really perplexed. She either thought I was a drama queen, or just plain crazy. She found a little vein to get the blood out on my left hand, in between my index finger and thumb. It hurt. And I cried more.

So by the time I was called back to pre-op, I was beyond exhausted. I was done. I wanted to run. But I didn’t have the energy. So instead, I tearfully changed into my really aesthetically pleasing bluish greenish gown, my shapeless, thin socks with grippies on the bottom (which are actually required in all hospitals, to reduce one’s fall risk, because, yeah, THAT’S what’s gonna keep me upright when the drugs get to me and my blood pressure plummets.) I asked the nurse for all the blankets she could give me, and I “snuggled” up in the bed and waited for Eric to join me.

Several minutes later, he walked in and made a poop joke or something, and I cried some more. I really was starting to feel doomed, like I was willingly laying myself on a bed to be wheeled off to my death at the end of the hall. A nurse came in to start my IV, which made me cry more. I explained that there was nothing left, that all my veins were shredded. She didn’t believe me, until she tried to find one. After a few obnoxious sticks, she found one, again on my left hand, up high between my pinky and ring finger knuckles. A teeny tiny little thing. And I’d feel every drip-drop of everything they’d put in me that morning. It was awful. So I cried even more. I was certainly not establishing myself as the strong soldier warrior patient ready to beat my disease and destroy the enzyme enemy.

When the nurse said she was going to start my antibiotic drip, I asked what it was. I decided I was going to check all the drugs against my two databased: the 80 page Swedish database I’d printed out and carry with me at all times in a hot pink binder, and the NAPOS online database. The vascular specialist’s office had assured me that they’d checked on the safety of all the drugs they’d be using, but I figured it could hurt to double- and triple-check for myself. And man, am I glad I’m an anal, obnoxiously researchy kind of patient.

The antibiotic was a no-no according to one list, and not classified (which means a no-no,) according to the other. She said she’d wait on it until I’d talked to the doctor. The one cutting me open. Whose name I hadn’t known until that morning. And whose face I wouldn’t see until minutes before my sugery was scheduled. So I asked the nurse to tell me all of the other meds that were supposed to be used during the procedure. Wouldn’t ya know it, most of them were at least questionable, and a couple were outright red. Dangers. Do-not-uses.

So when Dr. Vascular Specialist came in for his obligatory greeting, we kind of laid into him, frantically. He humored us enough to start rambling off, in a really know-it-all, lazy, stoner sort of way, alternative drugs he could use for sedation, and Eric, with the printed list, and I with my my iPhone searching the online database, would look each one up. The procedure was a simple one, typically performed in the radiology dept, with just the surgeon and a nurse present, with some sedation and a local anesthetic. But after Eric and I vetoed many of his drug choices, and he figured he couldn’t even so much as use lidocaine to numb the incision site, he finally got serious about it. With each “Nope, that’s red in this list,” and “Nope, that one’s unclassified,” I saw his body tense up more, and his suaveness dissolve. He ultimately decided to move it into the OR, with actual anesthesiologists.

Of course, this was a scheduling nightmare for the OR staff, and so my 8 AM surgery, for which I’d arrived at the hospital at 5:45 AM, didn’t happen until 11:30. In the meantime, I had three anesthesiologists, one vascular surgeon, and two nurses crammed into my little room, naming drugs while Eric and I looked them up. We finally all agreed on a plan of action. Glad I could be there to do their job for them.

Around 11, the anesthesiologist came in to start my drugs. I cried again. Each time she’d push something new into the IV, I was sure my vein was going to explode right out of my hand. I actually wailed a little. Screamed “fuck!” alot. She looked at me like I was crazy. And she warned me that the stuff she’d use to put me under was known to sting normal patients, who didn’t cry like little babies, so it’d probably just go ahead and light my hand on fire, for real. Then she pushed a little sedative to calm me down. But it didn’t really, and I could tell she was annoyed. (When dealing with someone like me, who’s been on heavy narcotics for some time, sedatives and things don’t work the way they would on someone, well, normal.)

I was completely alert when they rolled me down the hall into the OR. I was kind of surprised by what I saw. I always imagined ORs to look like this, but it felt more like this. OK, not at all that bad, at ALL. But it was really messy and cluttered with, I dunno, operaty stuff. I wondered if they’d managed to squeeze me into the OR schedule by actually using a storage room instead. I supposed they don’t really count on patients being aware of their surroundings when they’re in this room, or else they’d tidy it up a little. At least make me think they cared what I thought. Kind of like, when I’m having someone over for drinks, I at least shove the dirty dishes into the oven, so it looks like I don’t actually let them stack next to the sink until the smell of mildew forces me to break out the scouring pad and pick which ones will just get thrown away. I’d like for my guests to at least think I care about their opinion of my worthiness as a housewife, even though it’s all just deceitful packaging.

So before I could take in too much of the clutter, the nurses hoisted me onto the table, and strapped me down. A plastic mask was placed on my face with forced oxygen, the smell of which always makes me think of almost-cookies. Or the smell of rubber dog toys when they’re brand new. The mask wasn’t placed well, though, and instead of giving me nice big gulps of air, it had the opposite effect and made me feel like I was trying to breath through a pillow. But just as I went to adjust it, I realized I’d been swaddled. My right arm was firmly wrapped to my side, and my left was firmly strapped down to the arm extension thing on the table, so I couldn’t move. Which, while laying belly-up on a table with the brightest lights ever blinding my vision and faceless blue bodies whose eyes were obscured through goggles, made me feel, well, a bit, um, vulnerable. Before I could freak out out loud, though, the anesthesiologist (golly I’m tired of typing that word!) told me that she was about to start the really sting-y stuff. And holy freaking shit. It was amazing. I’ve never felt that kind of pain in my life! And I never want to again! I had to sort of marvel at the grandiosity of the sensation… Like my hand and arm were dissolving in acid from the inside out. I got out a half-scream, I think. And that was it.

Surgery over. Ported.

Forever to be metal-detected. Fun times in airport security lines to follow.

Then I woke up, again, way more alert than anyone expected, as they were moving me back onto the gurney. They wheeled me down the hall, back to the recovery room, where I greeted my nurses coherently and asked for some damn food. Eric joined me, and agrees now that I was not at all acting like someone who’d just been put under. It’s that tolerance to narcotics I’ve got now. The pain meds, did, however, leave me a little brazen, because I thought it’d be a really good idea to talk to one of my nurses about my lacey underwear (and show her, ) and to another about constipation and my experiences with it.

Anyway, everything went fine, I was ported, and I went home to recover. It hurt. A bunch. For a while. And it took me a long time to get the nerve up to look at it in the mirror. In fact, the day after the surgery, I went to have an infusion, and when the nurse changed the bandages on it, I almost fainted. Not for any particular reason. Just because I’m still a wimp somehow. And then a couple of days after that, I was supposed to change the dressing again, and rather than do it myself, I went to Adelaide’s preschool class, sat down in a little chair (not in the same room as the kids, of course,) and made one of the other moms, who happens to be an RN, do it for me.

About a week post-op. That line going from the lump (the port) to my neck is the catheter that goes into my artery.

But it’s all healed up now, and it only hurts a tiny bit now and then. Having it accessed hurts, because it’s kind of like getting a nose pierced or something. They really have to shove the needle with some oomph to get it through all layers of skin and the silicone top. But imagine having  your nose re-pierced every single week. And I’m, of course, allergic to the tape. Even the hypoallergenic tape, and it itches and leaves a rash. Every week. Just when the rash clears up, I get more tape.

But the hemetin seems to be holding the attacks off thus far. It’s making me really tired, though, so maybe I’ll adjust my dosage or frequency of the infusion. I’m going to my hemetologist today to discuss these things.

I’ll also try to get a better technical explanation of what hemetin is and why it works, and why it sends my iron levels sky-high and requires periodic phlebotomies. Oh yes. Phlebotomies. That’s another story for another post. I have really graphic pictures! Anyway, hopefully I’ll be able to understand it all more myself, and then pass that knowledge along to you. Since I know it keeps you up at night.





I’m back, like an attack. Or with one anyway.

16 02 2010

OK. Here I am. I’m back.

Truth be told, I didn’t write for a while because there just wasn’t too much to write about, porphyria-wise. That, and I stayed really, genuinely busy during the holiday months. I know, I know. No excuse for leaving my loyal readers in the dark. I do apologize for that, but I’ll try to make up for it now.  (And, I’d also like to throw in that our internet has not been working properly for the last few weeks, making it very difficult to do anything online, but after countless hours of phone tech support and two new routers, I fixed the problem. Just for you.)

So, like I said, I stayed really busy over the holidays. Too busy, in fact. I found myself constantly teetering on the edge of attack-mode. I played a game of pushing myself really hard, then crashing and trying to rest up and do absolutely nothing for a couple of days to ward off an attack. Not the greatest strategy, I’d find out.

By late December, I’d weaned myself off morphine. That was a HUGE accomplishment. I was in no way addicted psychologically, but holymoly, was my body hooked. I created a very calculated and slow weaning schedule, and stuck to it, but not without feeling like a heroin addict in detox. (I even smeared black eyeliner under my eyes and didn’t wash my hair for two weeks, just to look the part.) I had headaches, night sweats, muscle spasms, nausea, and worse of all, the all-over heebie-jeebies. My body was in constant motion. My muscles felt like they were itching, and the only thing that lessened it would be to shake or kick or punch the air. It made for some fucking awesome bedtimes for Eric. I begged him to give up and sleep on the couch until I was through it, so he could actually get some sleep, but being the good supportive husband he is, he stuck by me. Somehow. I think he just has a secret fetish for junkies.

So I coasted along, staying somewhat healthy, getting back to the gym and working out pretty hard… And then a couple of weeks ago, BAM.

I felt the ab pain coming on for a couple of days, but I tried to ignore it. I decided that mind-over-matter was the way to go, just because I didn’t want to deal with another attack in the midst of both of us being unemployed and trying to file for disability and Cobra and unemployment checks… The paperwork for government assistance has gotten so intense that I’m now using it as toilet paper when we run out. And, frankly, I knew that being sick would mean more paperwork to drown in, and it was just too much to deal with. But by the time I was leaning over the egde of the bed barfing into a trashcan (that Eric had insisted on placing there after I kept complaining of having “that queasy feeling that doesn’t actually lead to throwing up”,) I gave in and admitted defeat and headed to my doc’s office.

So, it just so happened that my primary care physician, the AWESOME Dr. Lea LaPlace, had recently mentioned to one of her hematologist friends, Dr. Bremer, that she had a patient with porphyria. And Dr. Bremer said, “Yeah? Me too.” Turns out she’s been treating someone for a while, ordering weekly maintenance hemetin infusions for her, so they schemed and decided that Dr. Bremer should take me on as well. When I walked into Dr. Lea’s office to tell her I felt an attack coming on, she told me that lucky for me, my timing was good, because she’d found me a new hematologist with hemetin. This was really, really good news.

She called up Dr. Bremer to tell her it was showtime. This was on a Friday afternoon, and Dr. Bremer told her she couldn’t see me until Monday, so I had to go home and maintain the attack until then. I was OK with this, since I still had a cabinet full of morphine, and Dr. Lea told me she’d alert the ER in case I got to the point that I couldn’t hold any food down at all, so that I could just pop in and get a glucose IV. Luckily, I didn’t get to that point. Good thing, since this all happened the same weekend that Portsmouth had 12 inches of snow, which hasn’t happened, um, ever.

This is your brain on drugs.

Getting my first infusion of the week. Just glucose and dilaudid.

I stayed in bed for the weekend eating nothing but potatoes, rice, and glucose tablets. And morphine. Monday didn’t come too quickly at all. I stumbled into Dr. Bremer’s office, seriously on the brink of about-to-lose-it. She sent me straight back to the infusion room, and hooked me up to a glucose bag and some dilaudid. The narcotic helped my pain situation a great deal, but I barfed my way through the treatment. Cute. She then called Norfolk General Hospital to set up my hemetin infusions. The plan was to get me in for four days in a row of infusions to halt the attack, and then start on weekly maintenance infusions, to continue for as long as I need it. In other words, potentially for the rest of my life.

The next day, a Tuesday, I went in for my first hemetin experience. And what and experience it was. Eric drove me to the hospital and we pulled right up to the front door and took advantage of the free valet parking. He stayed with me the whole time, since I was sick and pukey and drugged. We walked the maze to the back of the hospital to the infusion center: basically a big room outfitted with reclining lounge chairs, each with its own TV and TV Dinner Table. And complimentary IV stick.

They started with the glucose, which was set to drip for an hour, and they told me they’d call and order my hemetin from the pharmacy. They have to wait and order it after I get there, because once the pharmacy mixes it up, it has to be administered immediately. And the plan was to let me have about half the glucose, then stop and give me the hemetin when it was ready, and then give me the rest of the glucose. Well, before they ordered the stuff, they had to take my medical history. And when they posed the question “Are you, or might you be, pregnant?” I couldn’t say definitively that I was not. I told them I was probably not, but that’s not good enough, apparently. So there was a pregnancy test ordered (which happens to be the running joke between Eric and me, that everytime I see a doctor, the first thing that happens is that I get a pregnancy test,) and they had to call Dr. Bremer to find out what to do in case it was positive, which it wasn’t, but the point is, they lost precious time, and by the time the hemetin got to me, there was no glucose left. I didn’t know it at the time, but that would pose a little problem.

You see, the hemetin arrived, and what I saw absolutely floored me. It was a big glass jar full of black, thick, frothy liquid. It left a greenish tint on the glass. It made me throw up in my mouth. They had a decent IV in, in a pretty good vein. But. Once they started the sludge, my arm was on freaking fire. It was horribly painful. My very kind infusion nurse wrapped my arm in warm blankets to try to help, and Eric dumped dilaudid pills down my throat, but geez laweeze. Crazy pain. And the problem with the glucose being gone was that there was nothing to flush the hemetin through my veins after the infusion was done, so it just pooled in my arm, and I went to bed that night feeling like I’d lifted cars over my head.

Second day of infusions, pre-hemetin.

Hemetin nasty

That vile you see on top of the IV poll full of black guck is the hemetin being pumped into my vien. Mmmm.

Hemetin tube

...and there it is. That tube is not a black tube. It's a clear tube, with black foamy pudding in it.

The next day, the timing was better, and I got a good 30 minutes of glucose after the hemetin, and of course, they used the other arm, so it wasn’t AS bad, but it was still bad. It became very clear that this set-up just wasn’t going to work. For anyone. The nurses had a harder time each day finding a vein to use, and I had a harder time not punching them in the face while they looked for the vein, and my arms were turning into swollen masses of lumpy, veiny, hard, blue, hot pain.

My infusion nurses had a solution. One that my new other-girl-with-porphyria-friend utilizes, but is not without great risk. One which I’ll tell you all about in tomorrow’s post. And I’ll explain how I met said friend. Which I’ll write as I go get my weekly infusion.

I’m tired and going to bed now. But I promse, it gets interesting and kind of gross, with awesome graphic pictures.

Good night for now, folks.





Dr. Porphyria Himself: Part Uno

11 11 2009

We (Eric and I) are awaiting my appointment with Dr. Mezey. He’s the Johns Hopkins miracle worker who’s supposed to change my life. So far, we’re not off to a great start.

We arrived promptly at 10:30 this morning, after a 2 hour drive from Eric’s parents’ house in Round Hill, for my 11:00 am appointment time. The receptionist looked up from her magazine long enough to ask if I had my paperwork filled out that they mailed me. “I never received any paperwork,” I told her. I showed her the only two peices of paper that cane in the mail: directions and instructions. (I later watched two other patients check in and have the same conversation.) She gave me the paperwork to fill out there, and told me if I didn’t finish before I was called back, I could finish it later. I was, in fact, able to finish it before I was called. And by 11:30 I was still waiting.

Eric walked over to the window, and after a couple of polite “ahems,” pulled her out of her magazine to ask if she could remind the doc that his 11:00 is waiting.

“No, because he doesn’t see patients until this afternoon.”

Eh?

“Her appointment is at 1:00,” she said, as she skimmed a lipstick ad in the issue of Glamour or whatever that was oh-so-enthralling.

Ok. “So you didn’t think to clear that up with me when I checked in at 10:30, and wrote on the sign-in that my appointment time was 11?”

“No.”

So we grabbed our stuff and headed downstairs for lunch, and I cried a little. This is the office of the doctor who’s supposed to chage my life.

By the way, we’re not at Johns Hopkins The Hospital. We’re at an annex, which also happens to be a super-posh high end shopping center with snobby eateries. Of course.

More to come after the appointment…

Eric points out the posh sandwich and soup at the posh eatery.

Eric eats his posh sandwich at the posh eatery.

I slurp posh soup at the posh eatery.

The posh indoor/outdoor shopping center with posh boutiques and eateries... and a not-so-posh gastorenterologist office. Way to find some office space, Johns Hopkins!





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.

THANKS A FUCKING LOT, DOCTORS!

(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.

 





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.





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…