Close Call

November 25, 2014 at 3:09 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical) (, , , , , , , , , , , , , , , , , , , , , , , , , )

Everyone in the room – the doctors, nurses, Rave, and even me – all thought the same thing, but no one wanted to say it.

For me, it became tangible when I realized I was having visual hallucinations and disturbances and couldn’t hear out of one ear. My blood pressure numbers were getting lower and lower and no one knew why. My chest hurt like crazy and I was struggling to breathe both out of pain as well as panic. The doc even asked me what my advanced directives were – like did I want a breathing tube – which they had never done before. That’s when I knew I might actually die, like, right now.

I’ve written a lot about how I hate asking people for rides, that it feels like panhandling. Even when people assure me that I can always ask and they like doing it, I still feel terrible about the whole process. After I left the hospital in October, my team had set me up with a slew of follow-up appointments; the idea was I was not well enough to go back home and return to normal life, but I wasn’t urgently sick enough to warrant staying in the hospital anymore. In particular, Johns Hopkins runs a “Heart Failure Bridge Clinic”, the “Bridge” being between hospitalization and home. You’re able to access services that regular doctors or cardiologist offices don’t offer, like IV diuretics.

I was able to attend my first Bridge appointment, and it was pretty standard. Other than a small med adjustment, it didn’t seem like a big deal. So when I wasn’t able to find a ride to the second appointment, I didn’t really stress over it. But then I missed a PCP appointment as well. It was a combination of people legitimately unable to make it and me not being in an emotional state conducive to putting as much effort in as I should have. Both Rave and I have been swamped with a preponderance of to-do items that are all “very important” and time sensitive as well.

I don’t remember when we first noticed that my blood pressures were off. I know I had started feeling dizzy and intoxicated without any cause. But however we got there, I started getting these ridiculously and somewhat unbelievably low readings with an average around 90/60. My home nurse told me to keep a close eye on it; well, that’s not exactly true, as she first recommended I go to the ER. When I told her I was feeling fairly okay and really didn’t want to go back to the hospital (can you blame me after a series of two-to-three week stays in the last four months?), she told me to keep an eye on it until I saw her later that week.

I decided to ask Dr. Google if there was some easy things I could do to bring my blood pressure up. This is when I was introduced into my current medical dilemma: as a congestive heart failure patient, I should severely restrict my fluid intake; but the one reliable way to raise and maintain a good blood pressure is to drink a healthy amount of fluids. So over the next few days I drank more fluids that I was “supposed” to and as it were, the more I drank the better I felt and the better my numbers were.

Well, not all my numbers. People with CHF have to weigh themselves every day because even small gains may be a sign of fluid retention and could require a change in your diuretic dosing. Every day I “cheated” on my restriction, the next morning would see the resultant weight gain; usually only a pound or two, but by the end of the week I was up over 10lbs. My nurse was pretty unhappy but we all agreed that since I had a Bridge Clinic appointment that Wednesday, I would just wait and see what they had to say.

Except that no one I asked could take me to Baltimore that day. By Tuesday midnight, I sent the message to cancel my appointment. I don’t know what my plan was, but until they invent transporters I didn’t have a choice. I couldn’t even decide to drive myself, because Rave’s truck is still too broken to pass inspection and she needs my car to get to work. I didn’t sleep well that night. If I called an ambulance, they would have taken me to Hillbilly Hospital, and that was NOT going to happen. I felt defeated and depressed.

Even though Rave has been in hot water at work over how much time she takes off (mostly to take care of me), on the off chance the PTO gods would smile upon her, she submitted a request before she left work on Tuesday to see if they would let her take me to the appointment. We were pretty convinced the answer would be no, but I didn’t have a lot of other options. We were both surprised that when she got to work Wednesday morning, she saw that her request had been approved. She hopped right back into her car and came back to Hagerstown to pick me up.

We made a mad dash to Baltimore as we were cutting it pretty close, and the Clinic is one of those draconian offices that refuses to see you if you’re more than 10-15 minutes late. We even called ahead to see if that would help, but no dice. On top of that, I had only been to the location once before, and it’s hiding in one of the regular towers (instead of in the Outpatient Center) and I didn’t know which parking garage we should use. To make matters worse, there was practically no available parking in the one we chose, so we spent another ten minutes driving around in circles. We breezed into the office exactly 15 minutes late.

The nurse practitioner took my vitals and saw both the weight gain and low pressure – 80/40. She left the office to call her supervisor. Rave and I figured it was to figure out how much IV meds to give me…until more than 20 minutes go by and she still hasn’t returned. Finally, I gave voice to what we were both starting to fear – that they were going to admit me on the spot. Which is sort of what happened. There weren’t any free beds in the unit I would stay in, and after taking my blood pressure a number of times and getting consistently low numbers she felt the best course of action was to send me to the ER so I could be monitored while waiting for a bed. I am very glad to this day that this is what happened, as if I had not been in the ER when things went south I don’t know what would have happened.

Now, it’s good to know that even though my blood pressure numbers were ridiculously low (normal/average blood pressure should be somewhere around 120/80), I was upright, alert, oriented. I felt a little dizzy, a little fuzzy, and I was struggling more than usual with my aphasia, but overall I felt okay. I was more upset at the prospect of yet another long stay at the hospital forcing me to miss something I was really looking forward to (Thanksgiving with some of my most beloved tribe of the heart) and more medical complications and/or restrictions. But then things starting getting worse.

The first thing that clued me in as to how serious things were getting was when they moved me into the ERs version of an ICU bed. I was wired and constantly monitored. They took my blood pressure in just about every way conceivable – while I was in different positions, on different parts of my arms, and with different sphygmomanometers. My numbers were getting even lower – 80/30. 75/45. 60/40.

All of a sudden one of my ears went silent. It both felt and sounded like someone had slapped a thick earmuff on one side of my head. And of course, doctors and nurses and other hospital personnel are asking me a thousand and one questions and now I couldn’t hear them clearly. I was also getting more confused and finding it harder to understand everything that was happening. At one point, someone offered papers for Rave to sign because I was acting so erratically. (Yes, it’s legal, as she is my designated medical proxy.) I do remember someone asking me to state what was in my advanced directives, mostly about whether or not I had a DNR.

That was the first time I really and truly thought to myself, “This could kill me. They’re doing this because it’s possible this could actually happen.”

That was also when I noticed the visual distortion. I saw fireworks everywhere. Lots of red and off-white lights danced everywhere I looked. After images were causing trails if I moved too quickly (or if the thing I looked at moved quickly too).The light was getting brighter, to the point where I couldn’t really see anything else around me. My sense of chronological/linear time goes fuzzy at this point, so I have no idea in what sequence things actually progressed.

I do remember starting telling people, “I’m really scared. I am really, really scared.” Somehow, my reasoning said that if I refused to lay down I wouldn’t pass out or die. I started breathing more deliberately, again thinking that if I just kept willing each breath I wouldn’t stop breathing. The lowest recorded blood pressure was 40/30, although doctors are skeptical that it actually got that low since, in fact, I didn’t pass out.

That was just about a week ago. I eventually made my way into the critical care unit (which they call “stepdown”, as it is a transition between ICU and a medical floor) where we found out what the hell was going on. It seems there were three forces at play, and all of them were playing to win – which in this case means “messing with Del”.

  • CHF/Edema – In order to avoid retaining fluid which makes my poor heart and lungs work harder, I have to stay under a certain amount of fluid intake a day. I also take “water pills”, aka pills that make your body absorb less fluid and just pee it out instead. However, if I flush out too much fluid it puts a strain on my kidneys, which are already starting to show signs of damage from all this stress. It also leads to…
  • Dehydration – I am only supposed to ingest between 1.5 and 2 liters of fluid a day, and that’s not just what I drink. It includes any substance that becomes a liquid by the time it gets to your stomach, like jello, ice cream, pudding, salad dressing, sauce, etc. But as we all know, bodies need a certain amount of fluid to regulate themselves. I’ve always had low blood pressure, and 9 times out of 10 that’s considered a good thing. But when I was feeling dizzy and ill and I was pretty sure it was due to how low it had gotten, Dr. Google said the best bet to raise it was to drink more fluid, so I did. And even though I had increased my intake to almost 4 liters a day, I was still dehydrated because…
  • Infection – My pannus (the hanging part of my belly, the part that the 2012 surgery was about) is super swollen, which I assumed was part of the water retention caused by the CHF. Turns out that was only half of the story. My pannus is, once again, riddled with infected tissue. There isn’t a collection, like an abscess, that can be drained or removed. It is diffuse through the tissues. So my body was using every bit of fluid to make white blood cells and other infection-fighting stuff, which leads us back to dehydration. The lack of available fluids meant that the infection could proliferate faster and more efficiently. It didn’t help that I had to skip taking some of my meds for a month due to some health insurance stuff, and some of them were my maintenence antibiotics. (Bad Del.)

Yesterday I was transferred out of the critical care unit back to a medical floor I have been to before, which is nice because I know and like most of the nurses here. It also means less wires and other restrictions. The infection is pretty bad and causing a great deal of pain – the doctors keep telling me it’s the kind of healing that gets worse before it gets better. I’m on the good drugs for now – vancomycin (antibiotic version of a nuclear bomb) and dilaudid (painkiller version of a nuclear bomb). I’m in a lot of pain, but in a weird way it’s a familiar kind of pain, which makes it a little easier to deal with.

Most people with CHF really struggle with knowing how much fluid they can safely have without causing problems. Unfortunately, for me it looks like the line between too little and too much is very fine, and I’ve been warned that not only will it take some time and experimentation to figure out exactly where that line is and that there will be a lot of fuckups along the way. Fuckups mean more hospital stays.

My primary care doctor has even mentioned that I could go live in a skilled nursing facility – basically, a special floor in a nursing home that’s reserved for people of all ages who are too medically complicated to live at home but not sick enough to stay in the hospital. The idea is abhorrent to me, but if my lack of transportation is putting my life at risk I can’t fully dismiss the idea. Rave and I have started preliminary browsing to see if moving to Baltimore is even possible. However much we hate living in Hagerstown, the place we have is a godsend of accessibility; Baltimore is full of three-story row houses which will very likely not work for us. But I can’t even think about moving with a full heart until I deal with the divorce settlement, because Mike is claiming I have a part-time job with which I can support myself and therefore he should not have to pay spousal support or cover my prescriptions like he’s been doing since we split. I can’t afford a lawyer and few lawyers do family law pro-bono unless there are custody issues. It’s a big morass I cannot deal with without getting chest pain – and I’m not saying that to be melodramatic, I’m saying it because it really does cause me that much stress.

That’s the story of my close call. The reality and tangibility of the end of my journey is coalescing, and it’s a lot more terrifying than I was prepared for. One of my doctors admitted to me that if he were in my shoes, he’d be freaking out a lot more than I am. He even offered to send me a social worker to talk to, which is probably not a bad idea.

If you wanted to send flowers or the like, you can email Rave at delandrave at gmail dot com and she’ll give you the information. It would be greatly appreciated. I’m feeling kind of lonely and sad these days.

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Dr. Awesome Saves the Day

December 21, 2012 at 8:03 pm (Hospitalizations, Medical, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , )

This was an odd week, full of really big ups, some pretty scary downs, and a lot of moving in between.

I’ve been somewhat quiet around here (although I have been keeping up with my other blog. Part of it has been that I’ve just had more to say that didn’t fit here, but there’s a lot of layers to it.

As you may recall, I am now in the headlong stretch towards my radical panniculectomy on December 28th. I’ve had my presurgical appointments and test, and now it’s just a big waiting game for the most part. We’ve been running around on the Wiggio I set up for those who are actively participating in the process in some way, trying to settle all the last minute arrangements and details for those who are traveling to be with me before, during, and after the surgery. In that, there has also been significant spiritual set-up and ritual prep, and I’m very lucky to have two priests and two shamans I trust who are handling that side of things with little input from me.

Yesterday was a pretty eventful day, even though that’s not what the calendar said when I woke up in the morning. I had a little pulminologist appointment so he could clear me for surgery, and a plan to go get pedicures with my boyfriend and my girl. Nice, slow, lazy day.

As I got out of bed and starting getting ready to shower, I made a move that didn’t take the drain (currently attached to my abdomen by stitches) into consideration, and felt a shocking amount of acute pain. (My boyfriend was on the phone with his very Christian mother at the time, so although I wanted to express my dismay at this discomfort, I somehow managed only to stammer with my mouth closed and make some pretty exaggerated body language.) After a minute or two, it went from being intense to being bearable, so I decided to go ahead and take the shower. As I stepped into the bathroom, I realized my drain site was bleeding – more than just a few drops, but not a deluge. My panicked brain considered calling 911, but then I remembered they would take me to the rinkydink rural hospital in the town I’m squatting in, rather than Johns Hopkins which is about an hour away. So I took another deep breath, and called for my boyfriend. After we got the bleeding under control with some gauze pads and pressure, I made a slightly less panicked phone call to Dr. Awesome (not her real name, unfortunately) who is the general surgeon who is monitoring my drain. I explained the situation to her voicemail and then sat down for a bit to get myself together.

Forgoing the shower for the wonderful bath wipes I keep on hand for days when showers are too difficult, I was still able to get myself together enough to get to the pulm appointment on time. After wrestling with the poor check-in secretary who had to deal with all the convulutedness that comes with a legal name change (first *and* last, which I guess is much less common and therefore doesn’t have a lot of set protocol around it), all the while nurses are in the waiting room trying to sweep up the glass from a broken sliding window. It takes what seems like way too long, and then they ask me if I have the relevant records from Johns Hopkins. I sigh heavily, as I *know* that both Rave and I called them earlier this week to make absolutely positive that they had them, and we were assured that they had arrived. They had not.

I go back into the examination room, and I hear the doctor talking to the nurse about how really, this appointment is kinda pointless without the records, and maybe we should reschedule. I interrupt to add that although they are important, I’m also here for presurgical clearance for a surgery on the 28th and unless they can reschedule me before then, we might as well do what we can. He comes into the room and introduces himself, and sits down. “So explain this to me, then. What are you here for, exactly.”

I sigh. I am all too used to having a new doctor look at whatever information they have about me and have no idea where to start. I explain, “Well, there are two reasons, and I guess they relate to each other. I’m having a radical panniculectomy on the 28th, and the lead surgeon was adamant that I see a pulminologist to get clearance; in the whole crazyness that lead up to needing the surgery, an accidental lung CT found a small nodule in my lung, and I think he wanted assurance that between that, my apnea, and my weight, that I was healthy enough to endure a long surgery.”

“How big was the nodule?”

“About 6mm.”

“Oh, that’s nothing. Standard practice with something like that is to re-image in six months and then go from there.”

I sigh. I have now heard this three times. I get it. I add, “Well, I guess maybe they’re a little concerned because I also have inactive TB, for which I’m now on INH. But I haven’t had any cough, no bloody sputum, all the signs I’ve been instructed to be on high alert for.”

He shakes his head, confused but somewhat resigned. “Do you have COPD? Emphysema? Asthma?”

“Nope. And I’ve gotten through several surgeries without issue.”

“Okay. Well, since I don’t even have the time I need to do the testing anyway, and you seem like you’re going to do fine, I’ll write the letter. I just don’t understand why he didn’t send you to a Johns Hopkins doctor.”

“Well, I tried calling, but none of them had any availability until March; even when I told them my surgery was in December.”

Anyway, you get the drift. He made me a follow up appointment to deal with the nodule after surgery.

Afterwards, I was able to secure an emergency appointment with Dr. Awesome for Friday. Still a little woozy from the surge of adrenaline, I decided the three of us (Rave, Alex, and I) would go down to the pedicure place where we had an appointment as a sort of pre-surgery relaxation thing. I almost cancelled it, because I was feeling kind out of it, but decided to push ahead. It turned out to be a really good idea, especially since Rave had never experienced a pedicure before, and watching her face as they took out the various tools was delightful. We ended the day with dinner at my favorite diner.

Today, I saw Dr. Awesome and it was a really good and calming appointment. She assured me that some of the irregularities about my surgery that I saw on the 14th had been cleared up, namely that it was posted as an inpatient, rather than outpatient surgery (oops) and that they had a bed for me in ICU. She threw two extra stitches into my drain to keep it secure, since I only have to have it for another week anyway. Then she sat with me and talked, about the ragey way Dr. Sacks had spoken to me the week before, and answered some of my questions about surgery and afterwards in a much more calm, collected, and caring way. Before I left, I told her my nickname for her was “Dr. Awesome”, and she blushed.

This weekend looks to be a nice one. We are still in high gear in getting the house ready both for visitors prior to surgery, as well as starting packing since we should be moving pretty soon. We’re also going to be stepping up the house looking stuff, since we’ve only been able to see a few places and none of them have worked out one way or the other.

I will try to write one last entry before surgery, but if I go dark for a week or two, you’ll know why.

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You Can’t Get There From Here

November 13, 2012 at 8:21 pm (Living With Chronic Illness, Medical, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , )

If you follow me on social media (primarily Facebook), you’ve gotten little updates on the current situation, but I’m going to tell the whole story -albeit in short form, or as short as I can make it- of this current trip to Johns Hopkins. Yes, I am back in the hospital again.

Friday, I took my first dose of Isoniazid (the new TB drug). I waited until then because both of my bad experiences with Rifampin peaked on the second day, and this way it would be a Saturday so Rave could help me or take me to the ER if things got bad. I admit I was pretty nervous when I took that pill, and for most of the morning and early afternoon I was hypervigilant to any ache or pain my body may have.

Part of this hypervigilance makes me aware of how bad the pain in my pannus had become. Ever since the beginning of November, the very bottom of my pannus has been extremely sore and swollen. A light graze against a doorjamb or accidental poke made me shrink back in pain. I hadn’t realized up until then how much it was affecting me, and even the way I was walking.

But I went about my day, watching Glee and getting ready to write my silly Glee blog. I took a break and was sitting on the porch reading Twitter, and I realized my belly pain had increased, and I was feeling a little antsy. I got worried, as Rave wasn’t due home for another three or four hours, so I went upstairs and crawled into bed in hopes that rest would make it better.

I felt marginally better, although I had started feeling like the room was pretty warm. I struggle with odd temperature disregulation all the time, so I didn’t think too much of it. Rave brought me up dinner but I wasn’t all that hungry.

In fact, halfway through I started feeling overly warm and dizzy. I laid down and decided to take my temperature. Good call – it was 101.5. This was troubling, though.

I have three medical things I’m focusing on right now: the wound on my back, the new TB drug, and my pannus/the upcoming surgery. For all three, I am supposed to go to the ER if I have a fever over 100, nausea, lack of appetite, pain/discomfort, etc. I decide to wait a bit and see if eating had somehow spiked my temperature, but three hours saw no decrease. It was time to go.

Johns Hopkins (JH) is about an hour and a half from where we’re temporarily living in Hagerstown. It was a long, tense ride as I felt increasingly uncomfortable and alternately cold and hot. When we arrived, there was a collection of JH’s security cars parked around the entrance of the ER. Turns out it’s a “crime scene”, according to the policeman who directs us into the ER. A judicious welcome?

Once again, the big whiteboard announces there is a four hour wait to see a provider. I have to admit, when I saw the motely crew of all sorts of people waiting, and the remnants of adrenaline from whatever “crime” took place before we got there, it made me think of Stefon. On Saturday Night Live (shut up, it is not dead, and I have a giant boycrush on Fred Armisen) Bill Hader has this reoccuring character on the Weekend Update segment named Stefon. He is an effeminite hipster club boy who comes on periodically to recommend the newest hot spots, usually in conjunction with a holiday. I’m writing this entry on my phone, so I can’t embed a video, but trust me and go look Stefon up on You Tube.

Now that you’ve done that, you’ll understand what the ER was like when we got there. Luckily, I was called to triage quickly and then fasttracked into the ER in less than an hour.

This makes me happy because we didn’t have to wait, but anxious because that’s *never* happened to me before (going into the ER straight from triage, except in the case where the ER was empty or having a slow night). It turns out we’re just going to wait in a private ER room instead, because I think we were there for at least four hours before we saw the actual doctor.

It turns out it’s not the TB drug; they’re not even concerned. It is, however, that my abscess has regrown to almost exactly its old size, except this time it’s full of pus and other infected tissue. A new drain is inserted, and they admit me to drown in IV antibiotics and see what happens. There was some talk of doing the panniculectomy now, but the plastic surgeon thinks that it’s best to try to remove as much infected tissue as we can before we go cutting it up.

They’ve also noticed that new parts of my pannus are showing signs of other infections. The pain from all this crap is bad, and unrelenting. I am struggling with the doctors for adequate pain control. At least they had a glimmer of understanding of my opiate tolerance; when they reinserted the drain this time, I was healthy enough for twilight sedation. Two or three miligrams of Versed and a few of dilaudid and I am still alert and oriented? Even with that, it takes me a day or two to get back to the same treatment I had when I was here last. Finally, as part of the steps towards discharge, the surgeon I really like (whom I have nicknamed Dr. Awesome) figures out a pretty workable solution that relieves a real portion of my pain *and* is something I can continue at home. (She increased both the amount and frequency of the opiates I take for chronic pain. She is the first to state openly that although the 2mg dilaudid IV that I’ve been getting feels good when it’s first pushed, it is still too small a dose for someone with my level of tolerance.) Now we’re hoping that the pain management doc will sign off on the increase, at least temporarily, so I can go home with my pain managed and supported through the surgery in December.

Once again I go through IV sites like cheap pantyhose, and the subject of a central line comes up but too late to do me any good. The antibiotics are shredding my thin, weak-walled veins. Both Zosyn and Vancomyacin have that effect on people with typical veins, and it’s just exacerbated with all the other meds they inject into my line.

One of the challenges during my last stay was that when they cultured samples from my abscess, they weren’t able to grow anything. This doesn’t mean there isn’t an infection, but that it is likely not a run-of-the-mill one. This is why when I came home last time there was a lot of talk about MRSA. However, this time the culture does grow something: Pseudomonas. When they tell me this (during a rushed physical exam with a student present), I fight back tears and I don’t know why. The doctor doesn’t give me any information about it.

When I get a chance to both consult my favorite doctors (Drs. Wikipedia and Google), it becomes more apparent why I had such a strong reaction. One of my friends who had died from HIV had Pseudomonas, and it’s one of those infections that people with healthy immune systems are rarely affected by. This is yet another diagnostically relevant piece of information – although my doctors and I have frequently used the term “immunocompromised” to describe my situation, I don’t have any real medical proof (other than observation and/or anecdote) that my immune system is weak.

There is the diabetes, which at any point in the game can weaken or damage a person’s immune system, but it bears repeating that regardless of how morbidly obese I am, my diabetes is pretty mild. My A1C hovers between 5 and 6, and frequently lowers to “pre-diabetic” levels. My blood sugar numbers are reasonable as long as I am not in severe pain or under a lot of stress. (Or eat a lot of processed sugars, which I have made good strides in that department.) Overall, my diabetes hasn’t been chronic long enough, or severe enough, to make it a viable scapegoat for this.

Before anyone goes there, I am HIV negative, although I did have a pretty serious scare in the 90’s when I had several false-positives in a row. At this point in my life, my exposure risk is low and getting lower. I haven’t had penetrative sex with a factory equipped penis in over two, almost three years, and the chances of it happening again is pretty low. (A tale for another day.) I do still pierce strangers both as pick-up play as well as suspension work, but I’m pretty well trained on how to avoid fingersticks and how to treat one to lower my risks.

The thought I’m having, and honestly have been having for years now, is Lupus. Yes, I know, it’s never Lupus, but sometimes House is wrong, too. My mom was diagnosed with SLE in her 30s, and it made her pretty sick right away. There is some heredity with SLE, and that link is most often between a mother and her first born daughter (which would be me). All along this journey towards diagnosis, I have requested the most basic screening test for it and have yet to get a result. However, there are lots of cases where someone has a negative ALA and still has Lupus. I am seriously considering contacting a rheumotologist and being seen before the surgery to start the longer process of ruling everything else out.

Anyway, regardless as to what lowered my immune system enough to bring on this infection, I was actually lucky. There are two strains of Pseudomonas: one that is “pan-reactive”, or that can be treated with standard (but strong) oral antibiotics; and the other is similar to MRSA, in that it doesn’t react to anything but the very strongest antibiotics. I have the former, so I’m taking a combonation of Cipro and something else (I can’t recall the name).

When they admitted me, they said it was for two or three days. Last time, it turned into ten. This morning makes it day seven, but there is a strong rumor that I am getting discharged today. We’re waiting to hear from my pain doc, approving the much stronger dose. I’m also thinking they’re also watching to see if there has been any reactions with all the new-to-me meds. I am really hoping I am released, as it has been more difficult than usual to get enough quality sleep, and I have started havin mirco-sleeps (where I go from being awake and focused on the day ahead to falling into a deep sleep in seconds, dropping whatever is in my hands and even snoring; only to wake up a moment or two later unaware as to what happened. I also find myself “coming to” having struggled to continue writing. I’ve had other sleep-related episodes and even asked if maybe the doc would want to add a sleeping aid so I could sleep through the night.

It’s hard to write about this hospital trip without mentioning a real difference between this one and the one before, but it touches on an idea I have for another DfaD post, so I’ll just put it out there and elaborate later. Last time, I was here for ten days and had somewhere in the ballpark of ten to fifteen visitors; this time, I am going into my seventh day and I have had three. I know that last time I made several FB posts requesting visits; this time, I was careful to make a single request that said I was interested in visitors (and then 2 posts looking for someone to give Rave a chance to go home). Other than two notable visits, including the lovely K and the fabulous M who jumped on a train and rode all the way down from CT to spend 24 hours with me, I was alone every day until Rave came after work. But like I said, there’s a bigger post floating around in this.

So hopefully this is the slightly more detailed version of what the last week has been like. I will definitely be posting to FB/Twitter when I am released and when I get home. For now, I’m going to try to catch a little more shuteye before the onslaught of the “dawn docs” come a’roundin’.

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Cutting Away the Heart of the Matter

September 20, 2012 at 5:25 pm (Hospitalizations, Mental Health) (, , , , , , , , , , , )

I’ve been spending the last few days weighing back and forth on how much, if anything, I was going to talk about the upcoming surgery I face. It’s high risk, and a big deal, and it’s messing with my head in a number of ways. I’ve had several divinations done about it, and the situations surrounding it, and one point of view came out during a session that I hadn’t thought about.

The fact of the matter is that they are cutting away a good portion of my panniculus, sometimes called a pannus, or an “apron”, or in more direct terms, the hanging part of my belly. The doctors estimate that I will lose 50lbs of tissue during the surgery. And for some reason, when I heard about this, I had a very nuanced reaction, but one of the major emotions was shame.

I can’t say with a straight face that I do a lot of work in the fat acceptance community, but I do support it both by being an outspoken voice for it, and sometimes financially. I have come a long way, personally, from hating the fact that my genetics dictate the size and shape of my body, to accepting and even loving the unusual nature of the habitus I’ve been given. I even teach classes aimed at people who need ideas on how to better explore and use their bigger bodies to express themselves sexually. I do not, and have never seen, my size as a disability. It is a thing to be celebrated and appreciated, not abused, jeered at, and hated.

I, like many others, went through periods where I decided that I needed to change this – and I’ve approached it from all matter of healthy and unhealthy ways. I was labeled anorexic when I was in psychiactric care, which may be hard to believe when you think of the public images of that disease, but one need not be 70 lbs to starve oneself, to deny oneself bodily necessities as some sort of punishment. In fact, many survivors of eating disorders are not thin at all, but who started down that path due to the public and private shame that comes from being overweight. Most who know me also know that five years ago, Dr. WLS put me on a protein-shake-only diet in which I lost a significant amount of weight – near 140 lbs – in seven months. This is now been identified as one of the causes of my neurological condition.

I have come to accept that this is my body, and I am not what people think. I do not eat piles of fried food, potato chips, and ice cream. In fact, I frequently get told I do not eat enough. I do have certain culinary weaknesses, and I won’t profess that every single thing that passes my lips would meet muster with whomever the diet cult leader is at the moment. I have done the atkins thing, and the south beach thing, and the paleo thing, and the cabbage thing, and the slim fast thing, and the vegetarian thing, and the macrobiotic thing, and the low fat thing, and even that really popular “points” thing. (I will admit I’ve never done the “ship processed foods to my house and that’s all I eat” thing, but mostly because that thing is wacky expensive.)

And here I sit, somewhere around 400lbs.

The reason that I have to have my belly excised is complicated. Part of the reason is because my intestines are in there, and they don’t get proper abdominal wall support, which has been the cause of all of my hernia issues. Another concern is that there is now a buildup of infected and necrotic tissue, possible due to the several surgeries having this pannus has caused. I am currently draining a very large absess that grew to large proportions unnoticed in my belly because of its size. And finally, it does hinder my mobility to a certain degree. So it has to go.

It amuses me that, technically, the surgery I’m facing is a “tummy tuck”. Of course, it’s a much bigger undertaking that some afternoon vanity procedure for a supermodel who ate one too many pieces of pizza. My “tummy” is quite large, and has organs in it, and cannot be supported by something like a binder or a girdle. (Those items just end up compressing my pannus against me, or falling off due to lack of support. Believe you me, it’s been tried over and over again by several doctors.)

So why am I ashamed of this? Why does this seem to be the kind of procedure to have in secret, when no one knows? Why do I have a hard time articulating what is just another medical procedure, when I’ve been so candid up until this point with every little other thing?

I hold my belly in my hands for a moment. I don’t want to be a part of the pressing media shame machine that tells fat people that being fat is a medical disaster waiting to happen. I don’t want to be counted among their statistics of overweight-related surgical and medical procedures. Even the lead surgeon who is performing my panniculectomy said, “It happens to people who weight 145, and who weigh 400lbs. It’s not about how much weight, but how it’s distributed.” I just happened to be descended from the “Eggs on Sticks” tribe, where all of our weight is in our trunk and abdomen. Luck of the draw, I guess.

I also can’t, for the life of me, imagine what my body will look like when the procedure is over. I had a similar surgery a few years ago, but it still left me with a significant apron; this time, they’re going to take as much as they can without putting my body into shock. The reason the surgery is high risk is because I’ll be under for up to 12 hours or longer, between removing the tissue, making sure the infected stuff doesn’t cross contaminate and is completely removed, making sure my intenstines are secure and supported by a strong muscular wall, and that the absesses won’t reoccur. Most of the images I’ve found of people who have had similar procedures end up looking like they have a beer belly. I guess that will help with making me look slightly more masculine?

But yes, I don’t want my personal medical procedure to be proof positive that being fat will lead to these sorts of things. It’s important to remember that other factors contributed to this as well – I won’t talk about whether or not Dr. WLS’s past work on my belly lead to this, because I’m still investigating legal recourse, but from that statement alone you should figure out my stance on the matter. I keep repeating to myself, “It’s about the belly, not the fat”, but it isn’t getting through.

So there’s one of the several trains of thought that I’ve been processing. Maybe you, too, have had to face the dubious line between fat acceptance and medical intervention? How do you reconcile what you were born with, with what the medical industry says is “healthy”? And how do you approach a surgery you’re ashamed to admit you need?

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