The Three Sided Coin

April 16, 2013 at 7:21 am (Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you just want the short version, you can skim/scroll down to the “Here is the TL:DR Bookmark”, and start there. You’re welcome.

As you all know, I had a panniculectomy in late December, from which I healed much faster than expected. The surgeon had predicted a much more dire situation, but in the end other than a little breathing issues on the table everything seemed to be going fine. By February, the surgeon was ready to start scheduling my follow-up appointments six weeks apart; we had agreed before the surgery that we would be following up for at least a year if not longer, because there was a really high chance of post-op complications. Six weeks was the maximum time between follow up appointments, so that’s how well I was doing only two months after the knife.

In the middle of March, I noticed that there was some very slight swelling around the right-of-center part of my abdomen, around part of the surgical scar. The doctor has warned me that there might be odd swelling up to a year afterward, so at first I dismissed it. Also, I had just spend two and a half months “healing from surgery”, so I wasn’t keen to go running back to the doctor right away; I wanted to spend that time and energy getting back into the swing of things post-separation, booking some gigs and finishing the book. Every week I’d say to myself or Rave, “I should call Dr Sacks about this swelling in my belly; it looks a little worse.” And then I’d get distracted doing other stuff and wouldn’t. I kept assuring myself I had the six-week checkup already planned and if nothing else, I’d be seeing him then.

Six weeks finally passed, and I went to see him for the appointment. As soon as he walked in the room, my guilt jumped out at him and said, “Don’t be mad at me; there’s been some swelling. I kept thinking I should call you, but I was busy with other stuff and was afraid I’d have to go on hiatus again to deal with it.” He laughed; he reminded me that this is my body, not his, and if I want to ignore something I had the right to do so. He’d eat those words a few weeks later.

This is an interesting thought, and something worth going on a bit of a tangent on, if you’ll indulge me. (Again, if you want to skip ahead to the part where I get to the point, feel free.) Between having friends who deeply care and sometimes feel invested in my well-being, and being a blogger who shares their medical journey with the general Internet public, it can sometimes be overlooked that we’re talking about my body, and that everyone has made decisions that did not put their body or their health at the top of the priority list. Whether it’s extreme sports or eating a triple bacon cheeseburger with hamburger patties for buns, we accept that sometimes the experience is worth the risk. But when one is both public and chronically ill, people tend to want to bundle us in soft cotton and keep us from any extra suffering. It’s actually something I’ve read quite a bit about when reading disability advocacy and activism papers; that part of fighting for body autonomy is fighting for the right to do unhealthy or risky things with one’s body regardless of one’s state of health/ability when they make that decision.

In writing this blog for over a year, I frequently get emails, comments, or find myself in conversations, in which people basically inform me that they know more about how to treat my body than I do. That’s not what they say, but it’s what they mean. When someone sees me eating something delicious, but not the most healthy (or these days, merely something I’ve previously stated is a food or drink I am avoiding) they feel they not only have automatic permission to point this out to me, but in some cases, they physically take the food away or publicly shame me for making that choice.

During this hospital stay, people have been bringing me slushies from Sonic, which is a total Del comfort food. They’re basically fruit, simple syrup, and frozen water (and I get the ones that Sonic claims are made from “real fruit”, rather than just a flavored syrup), but it doesn’t take a food scientist to know that they’re full of simple sugars. My blood sugar numbers have been pretty shitty lately, and most of that is due to stress/pain. However, I’ve noticed a behavior among the nurses here that I really wish the rest of the world would take a cue from: they don’t care. When I get “caught” – when a nurse comes in to take my blood sugar only to see a half-empty Sonic slushy on my table next to my laptop – the nurse doesn’t actually say or do anything at all. It’s me, responding to years of programmed fat-and-sugar-shaming, that immediately jumps and says, “You caught me. I was having a slushy.” And it is Pavlovian, this response, because my experience from the last few days has shown me that the nurses don’t give a damn. It’s the people visiting me who make the judgement statements or even just a joke about how terrible it is that I’m drinking this thing.

It’s as if disabled/chronically ill bodies no longer belong to the person using them. We are community property, open to scrutiny and judgement by anybody, but most often by people who think they know better. However, I will assert that when a person feels entitled to judge another based solely on what they see/hear/know in the moment, or solely on what that person shares on the Internet, frequently their judgements say more about them than they do about us. Someone may attempt to shame me for my choices, as some sort of dodge or deflection about their unhealthy choices.

There’s more I want to say about this, but this tangent is getting really long and you’re more interested in what’s going to happen next in my hospital story, so remind me to come back to this sometime.

He didn’t think the swelling was anything particularly surprising or negative, but he sent me to get a CT scan right away to see if it was a new fluid collection or abscess. It turned out I had a much smaller (9mm) fluid collection, but that it was not infected. I got another drain installed via Interventional Radiology (IR), but there was (oddly) very little fluid coming out. What did come out was serrous fluid, or basically white blood cells. I only had the drain in for a week and a bit, as it mysteriously fell out of it’s own accord on that Sunday when I was at Charm City Fetish Fair.

The day before that happened, Saturday April 6th, was a very bad day. Even though I knew I needed to be up very early (for Dels) in order to go to Charm City and register, I could not for the life of me get any sleep the night before, mostly because I felt pain and nausea. It was bad, really bad. Probably the worst chronic illness day I’ve had in the last two years. We got to the hotel and I went right to sleep, woke up, did my class/panel, went right back to sleep, woke up for my volunteer shift, and then sleep. I couldn’t really eat or even drink fluids because I was so sick to my stomach. I emailed my surgeon and his PA to tell them how bad I was feeling and asking for their advice. Dr Sacks felt it was no big deal and to be expected, whereas his assistant thought going to the ER there and then was the better choice. As I was not feeling inclined to go to the hospital, and Dr. Sacks was assuring me it didn’t have anything to do with my abdomen, I decided to stay at the event.

As part of my earlier tangent, I wanted to add another point here. Again, feel free to skip this part.

Another way in which people outside of my immediate circle judge me and my choices is when they criticize me for leaving the house. I have lost count of how many times someone has suggested that if I only stayed home more often, or rested more, or did less work, or some other way confined my life to my bedroom, I would miraculously feel better and/or have taken better care of my body. They also feel entitled to make those comments because I openly write about financial struggles and have received donations from people in the past to help cover medical costs; and yet, I also write about going to parties or events or in some other way spending money on a social life that, in their opinion, would be better spent on medical costs.

I can’t stress enough how backwards this is. If I never go out and never do fun things, then my entire life becomes restricted to “being sick”. The only people I know – and I do know them – who want their lives to completely revolve around being ill/having medical emergencies, are mentally unstable. They thrive off of the attention people who suffer are given, and they are immediately jealous if someone else gets one iota of attention because that other person is also suffering. It’s as if there is nothing redeeming about them, nothing worth paying attention to or engaging with them over, except their illness.

I, and I like to think saner people, fight that perception with every bone in our body. I begged Baphomet to allow me a second blog specifically because my online presence had become completely focused on me being sick, and it’s not the only, or even most important part of my identity. But in order to do that, writing about my adventures is not enough; I actually have to go have them. Now, this doesn’t mean that I spend the grocery money (or the prescription money) on sex toys and roller coasters, but it does mean that – gasp – I choose to cut back on one thing in order to have fun, and also that – gasp – I frequently go out and do fun things when I “should” be home resting. Anyone who tries to shame me for leaving my house twice this month, putting off seeing the doc by a week or two, doesn’t understand or support the concept of people living full, complete, joyous lives. And that’s just sad, because it means that their life is so boring, so empty, that their idea of fun is to criticize and ridicule some random person on the Internet for doing something fun.

Sunday morning came, and our plan was to get dressed, eat some breakfast, take a look at the vendor mart, and go home. A friend of mine was in charge of vendors and was telling me that no one was buying stuff and the vendors were feeling kinda desperate. As I was getting dressed, I turned at one point and realized my drain was on the bed, and it was too far away from me to still be attached. Sure enough, upon closer inspection, I could clearly see the end of the tube that goes inside of the abscess lying on the bed like it was just another piece of my outfit. I emailed Dr Sacks and his PA again, and this time they both stressed that I should only go to the ER if I felt I had to, because there was really nothing the ER could do to assist me. I bandaged up the wound and left the hotel for home, spending most of the next two days asleep.

I was looking something up online about Isoniazid, my TB drug, when I remembered about liver-toxicity, which is a well known and documented side effect that hits those who get ill a lot. I brought up a page on the med and lo and behold, there’s a list of all of my current symptoms under the heading, “Seek out medical attention immediately if you experience…”

I had been waffling about calling a new PCP or going to see the old one. My PCP is no spring chicken, but at least I’ve been with him for long enough that I feel like he knows what’s going on and how to look at the bigger picture. However, I couldn’t get in to see him specifically, but another doctor in his practice. My ride shows up to take me to the appointment, and even she suggests we skip it and go directly to the ER instead. At this point, however, I’ve created this narrative in my head that says “If you go to the ER, it will be an emergency. If you go to the doctor, it will be no big deal.” I even reaffirm my decision when we reach the point in the journey where we could still peel off and go straight to the ER.

Well, we know how that played out. The PCP listened to what I had to say, and immediately knew she was out of her depth and I should go to, not just the ER in general, but the ER at Johns Hopkins, since I’ve been working with them and my files are all integrated. So my patient driver and I hop back in the car and reverse our trip to JHER.

It is quickly realized that I do not have a liver problem, but whatever is ailing me is fucking serious. I get admitted fairly quickly, even though it takes hours upon hours to get a bed. I start to feel much more ill as they park me in a tiny waiting room (which they now swear is a “staging area”) for two hours with no supervision, no one checking in to see how I’m doing, and a gaggle of very angry sick people who have also be relegated to this purgatory. Finally, Rave and I make enough of a stink combined that they move me back into the ER proper but we have to continue waiting for a “real bed”.

We learn that the new fluid collection has grown larger. It now has a “skin”, a membrane that holds it all together, which makes it really difficult to kill with antibiotics alone. They take cultures and try to determine exactly what is in there and what way is best to treat it. I end up losing the fight over getting a PICC line or central line when they start running Vancomyacin through my veins, and I blow three or four veins that first night alone.

The next few days are kinda blurry for me. See, at the same time, I started suffering from very short bouts of amnesia. I would forget where I was, or what I was doing at Johns Hopkins (I kept thinking I was back in High School). I got a neuro consult and although they’re testing just to make sure I didn’t have a mini stroke or temporal lobe seizures or anything like that, they think it might be a side effect of long term use of narcotic pain meds. I don’t know if I agree, but I do admire them for at least making an effort to make sure it’s not something more serious. They chided me a bit for not chasing the neuro stuff more aggressively (like going to get all the test my neuro ordered or going to see him more often) and I explained that I have been putting out fires since August and am doing my best.

Anyway, now you know enough of the backstory to get to the point.


Here is the TL:DR Bookmark

The Infectious Disease Doctors, The Plastic Surgeons, and The General Surgeons all agree.
The reason I am getting these infected abscesses in my abdomen is because of the mesh that was used during my ventral hernia repair back in 2009. Yes, that was Dr. WLS’s doing.
They used mesh to hold up and strengthen my abdominal wall, and in the process the mesh grew a “biofilm”, basically, a wonderful fertilized area for bacterial infections to grow and flourish.

Option One: “The Big Deal”

I will continue to have these infections while I still have the mesh inside of me. Removing the mesh, however, would be a big deal surgery wise. The mesh is covered in adhesions, and may very well be attached to my intestines, and it was put there for a reason. So this surgery, which I’ve nicknamed The Big Deal, would be a team of surgeons going in, finding said mesh (it doesn’t image well on CT or Xray), carefully removing all the adhesions, removing it from my bowels (which could get complicated very quickly, and include such favorites as “Bowl Resection”).

The surgeons are giving me all the exact same doom and gloom songs that they did about the surgery in December; that I will definitely be in the hospital for close to a month if not longer, that there is a really good chance I won’t make it through the surgery (especially now that I had a hiccup in the Dec one), and it will be a very long and difficult recovery with lots of creative agony and embarrassment. But this time, none of the surgeons want to do this surgery. They all feel this is something we should wait, and plan, and know the area super well beforehand, for the reasons we all know and have discussed.

The only way The Big Deal would happen during this hospitalization is if I spiked an abnormally high fever (like 104), or in some other way showed signs of advanced infection.

Option Two: “History Repeating”

My second option, which is still very much on the table for this hospitalization, is to address this specific abscess. That would entail having much the same surgery that I did in December; it would be much more superficial than The Big Deal, in that it would not entail cutting into the muscle wall or anything like that. It is still as dangerous as it was last time, but we also know that I did very well with the surgery itself and healed fairly well.

Option Three: “No Cuts, Just Infinite Pills”

This is the option most of the doctors (but not all) are currently advocating for, depending on how the next few days go while I’m here. This course would be to put me on really strong “nuclear bomb” home antibiotics, either via a PICC line or oral meds, for six to twelve weeks. After that, I would be given a permanent prescription for whatever antibiotic they feel will fend off more infections in the abdomen. I would still have the mesh, and that would still be fertile soil for growing infections, but the antibiotic would hopefully keep the infections from becoming anything to write home about.

Before you get all excited that there’s a non-surgical option, there are some big drawbacks to both being on a nuclear bomb level antibiotic for six to twelve weeks, and there are some bigger drawbacks to being on a permanent antibiotic prescription. Now, I’m saying “permanent”, but that makes the assumption that we never decide to try to correct the problem surgically.

Now, this makes it sound like I have a decision to make, right? Not really. I need to be informed about each of the options, and have a general understanding of how I feel about them and how seriously I want to pursue them. But how things like this usually play out is that the doctors will look at all the test results and data and make the best decision based on their knowledge and experience, and then recommend that choice heavily to me. It doesn’t mean I couldn’t chose to advocate the fuck out of a different choice if I really wanted it (like in Dec, when Dr Sacks kept suggesting reasons why we’d postpone the surgery another six weeks), but I’m the type of guy who trusts but verifies.

If we lived in a world where I could make a free and conscious choice, I would probably choose History Repeating for the right now, and then spend the summer preparing for The Big Deal. I’ve already reached out to Dr. Awesome and asked her if she might be willing to look at my current records and give me a consult over what she thinks is the best choice; but I did this with the covert agenda of asking her to be my surgeon for the Big Deal. Dr. Sacks would handle History Repeating, but I know from past discussions that he would feel uncomfortable doing The Big Deal all by himself. He and Dr. Awesome have worked together in the OR before, so it’s possible to get them to team up for The Big Deal.

Right now, they’re still trying to get a very accurate understanding of what types of infection I have growing in my abdomen, and also digging up information about the mesh that was installed – when, what type, where, etc. If I had to take a wild guess as to how much longer I am going to be here, I’d say at the minimum three more days, at reasonable maximum (barring surgery) I’d say a week or a week plus a day or two. If History Repeats, I would bump that up to two to three weeks.

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Things are Looking UP!

November 26, 2012 at 9:38 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , )

I get comments sometimes that this blog has turned into one gripe after another about how negative my life is; a “bitch fest”, “too much focus on the negative, and not enough positive thinking”, etc. So I thought since I’m having a pretty red-letter day that I would take a moment to let all of you know some of the positive things that are going on in my life.

First and foremost, when I was seen for my post-hospital stay follow up, my surgery team jointly decided that there was no need for me to be seen again until my pre-surgery appointment on December 14th. This is great news, and basically turned 4 appointments into one. We decided to leave the drain in until surgery, both to reduce the number of appointments and also to keep the abscess from cultivating more ick before it’s surgically excised.

We’ve found a great service that we’re going to be using to control all the informational traffic around the surgery and aftermath; rather than litter social media and having multiple phone trees, we’re using Wiggio as our sole information stream. We chose Wiggio because it has a ton of features that will be useful for us, including the ability to send mass text messages, have a shared calendar to schedule visits, project folders to organize different things that I or Rave will need help with, and lots more. The way the Wiggio works, you need to send us an email at delandrave@gmail.com to request an invite; we did this so we can know everyone who is on the group and make sure people who are on there are more than just passively interested in what’s going on. There will be some posts made to social media, so if all you want to know is if I’m out of surgery or ICU, there will likely be posts to that effect eventually. On the other hand, if you want to be actively involved in helping Rave with things during my hospital stay, or want up-to-the-minute information on my situation, please feel free to ask us for an invite. If you’re not someone we already know, you may want to include some information as to how you know me and how you expect to be helpful, so we have some idea. Like I said, we want to make sure everyone who is on the Wiggio is someone we trust to be an active partner in what is happening.

In that vein, the house that we’ve been affectionately referring to as “The Squat” is on the market, and the arrangement was that we could stay here until it sells. Well, an offer has been made, and if the bank accepts it, we have 45 days to vacate the premises. But fortunately, we found a perfect place for us right in southeastern Frederick; Rave went to tour the house today and found it to be old and a little beat up, but otherwise totally awesome. It’s on a 41 acre horse farm, a four bedroom house with a master bedroom/kitchen/full bath all on the first floor. I love that we’ll have space for two guest rooms, which will double as a sewing room for Rave and an altar room for me. We should be getting an application tomorrow; we tried to make a deposit because the landlady said she’s had a LOT of interest, but she wouldn’t accept it. So for now, we just ask that you keep your everythings crossed that the application goes through with flying colors and we can solidify a place to live. It would mean a large burden off of both of our shoulders, so we can focus on the surgery without having to split that focus with the arduous task for finding a place to live.

And what’s made that all workable has been the incredibly wonderful response to our request for help. We’ve received so many packages from my Amazon wish list, and a blessed amount of financial assistance. We have enough to make a good deposit on the house, should we pass the application. However, we can always use more help, so if you haven’t had a chance to check it out, please take a look at my entry detailing the many ways you can be of assistance to us.

That’s not all! Rave went down to my old house to pick up some belongings and happened to find a piece of mail I have been waiting on for four months! Yes, that’s right, my name change has been approved, no court date needed! I am so incredibly pleased that my name is finally my own in all senses; I have been told by my Gods that I am *never* to change it again, no matter what. I finally have a name I chose for myself, one that represents who I am and how I move in the world. I took my long-time nickname and nom de plume, “Del”, as my first name. I kept the middle name my parents gave me, because it’s pretty awesome and also as a tie to my familial line, so it stays “Astra”. Finally, I was able to shed myself of my STBX’s last name (which I wasn’t thrilled about taking in the first place, but did it as a token of my love and devotion to him) and take my Clan’s name, something I’ve been wanting to do for quite some time but my STBX was totally against. So my full legal name, which I am unafraid to post on the Internet, is Del Astra Tashlin.

Another great thing is that I am now on a course of drugs to finally treat my latent tuberculosis, and I haven’t had any withdrawal or other terrible side effects. I, by no means, am trying to say it’s been a walk in the park, especially combined with all the antibiotics and other meds I’m on, but it’s nothing like when I tried the Rifampin, twice, so I am so pleased that someday, I will be TB free.

So in all, things have been looking up here at The Squat. We’ve finally hit a streak of good news, tons of support from our friends and family, and are preparing for a surgery that, although it won’t heal *all* the problems I face, will significantly reduce my suffering (especially in terms of infections and repeated hernia surgeries) for some time. There is hope that while I’m in the hospital, they will be able to run a battery of tests to help discover why my immune system seems to be so suppressed/why I seem to get every infection that walks by, as well as possibly transfer my pain management to an office closer to where I live now (the one I currently see is now over three hours away!), and also get more Johns Hopkins doctors interested in my case so I can get some integrated care – where the ID doc knows what tests the neurologist ran, and the pain management doctor can talk to my surgeon about how to administer meds so my chronic *and* acute pain can be treated simultaneously, and the like. This is all very exciting, and a really good reason to live, which is the real thing I’ve been looking for these past four months.

Thank you to all the Gods and Spirits who have been with me patiently while I thrashed through my suffering! May they stay beside me through the trials ahead, but also be able to celebrate with me all the good things that have come into my life! Thank you to all the people who have done the same!

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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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Sometimes It Feels Like a Three Ring Circus

August 27, 2012 at 1:22 pm (Medical, The Journey Towards Diagnosis, Tuberculosis (Inactive)) (, , , , , , )

I will admit, I’ve been shying away from posting some of the medical stuff I’ve been going through online; it’s kind of a silly reason so I’m not going to explain it. But today was full of such medical fuckery that it would be a disservice to humankind not to share at least parts of it.

In my last medical update, I was scurried off for emergency testing because they saw some sort of cystic lesions around my surgical site. This test was supposed to be an abdominal CT. I went to Johns Hopkins the next day and got that taken care of.

Then I waited. And waited. There were symptoms I was told to look out for, and when they occurred I called my GP. And waited. Finally, I called the office and asked for the practice manager; she promptly informed me that they had not yet received the results of my “STAT” CT, but that she was going to call JH and get them right away. She called back about an hour later and told me they had seen a small nodule, but nothing to be alarmed about, and I should re-test in 3-6 months.

You’d think this would be good news, but I informed her that my symptoms were increasing, and getting pretty uncomfortable, and what was I supposed to do now? She informed me that she is not a doctor, so the best bet would be to come back in and see my GP again. We made an appointment for the following Monday (today).

Please remember in this story, that I’m not living in my former home in Germantown. I’m about an hour and a half away, and most of the journey is on commuter highways. So we had to leave at the crack of dawn (literally) to make our morning appointment. I had a very bad emotional night, so I had only gotten about two hours of sleep. We pulled into the parking lot with only moments to spare and was seen pretty much right away.

I then find out that my appointment is not with the GP I’ve been seeing for years (who at least pretends to have a grip on my whole medical situation) but a new doctor to the practice. I ask if it would be possible to see my GP instead, since I saw him in the office while I was waiting. I was told that no, he was not available and my choices were to see New Doctor now, or make another appointment to see GP. Since we had traveled a while and gotten up early, I went with New Doctor, which is always the bad choice.

She comes in, and she’s this diminutive Indian-looking woman (I don’t know her actual heritage). I have to admit to a little bias here: I try to stay away from doctors with heavy accents, as I have a hard time understanding doctors without them, and it only makes communication more difficult. As she introduces herself, I realize that she has a accent, but I do my best and ask a lot of questions.

I give her the short story of what’s been going on with the emergency surgery in April, and more recently, and she pulls up my file on the computer. However, she can’t seem to locate my CT. Finally, she gets the practice manager to come in, who remembers my story, and finds it immediately. The doctor comments, “But this is a chest CT, not an abdominal one.” My heart sinks, somewhat appropriately from my chest into my abdomen.

Turns out, the GP’s office wrote a script for the wrong CT. (Even though I knew the answer, I specifically asked her, “So was the screw-up that the wrong script was written, or that the techs did the wrong test?” and after hemming and hawing, admits that the screw-up was on them.)

I will admit, I almost lost my shit. I mean, I’ve been having a pretty difficult emotional time, what with the separation and my friend dying and my car not turning over last night, so I came in a little loaded to bear. But this sure felt like a camel-breaking straw. I did my best to swallow my seething frustration and decided to ask about the “nodule” they found.

She says it’s pretty small (6mm), which is probably nothing to worry about, but that I’ll need another chest CT in 3 months. I inform her that I’m seropositive for TB, and that changes her tune. She gives me a referral for a pulmonologist (in that area, rather than near where I’m currently living, which is basically useless to me) and urges me to follow up with him to make sure it’s not TB. Hurray!

Then we get back to the matter at hand. She does a quick exam of my belly, and immediately feels the difference between the rigid parts and the softer parts. She also sees that pushing on certain areas cause me pain. She looks at my surgical scar, and then she tells me to get dressed again.

She informs me that it’s probably a “seratoma” (Dr. Google couldn’t find much by that, but I think she meant seroma, but it we need the CT to be certain. (The funny part is that Dr. Google says that seromas are almost always due to surgical error, but I don’t even have the mental spoons to go there.) It could also be an abscess, which is pretty dangerous, especially in someone like me who gets infections easily. The normal course of action is to go see the surgeon who performed the procedure, and I make it very clear to her that I am basically unwilling to do that unless it’s my last and only option.

She explains that I could ask for a second opinion, and if that second doctor found something noteworthy, they would be the one to correct it, not the original surgeon. I ask her if it’s at all possible to skip the part where I go to Dr. WLS at all, and she comes up with an idea. She calls Dr. WLS office and leaves a voicemail asking if he’d be willing to make a second opinion referral right away. Unfortunately, because nobody answered, I have to wait a few days to find out the end of that tale.

I end the appointment by asking her my stock questions in these sorts of situations: is there anything I can do for the symptoms? Nope. You’re already on heavy painkillers. (Uh huh. Like they will do anything.) All right, I say, so what symptoms do I look for that say “Go to the ER?” She lists a few, but they’re all symptoms I experience pretty much daily. The only one that stood out was “7 out of 10 pain”, to which I replied, “Well, then, I should have gone to the ER last Wednesday, because I was in a fair amount of pain for hours then.” She lists the rest, and again, nothing that would alert me any more than usual.

So here I sit. Now I have to go back into emergency mode, because if these things are seromas, they could be mildly dangerous; if they are abscesses or, y’know, just about anything else, it can be pretty fucking serious. And unless something earthshattering happens, I’m likely to overlook symptoms that might mean GO NOW, because I can’t discern them from everyday stuff. My best bet is to get the tests done right away, and try to keep my head about me, which is a little hard seeing as all the stress I’m under. I also already had two other appointments this week that I can’t reschedule, both in DC, which is an even further commute than my GP. (Did you see the part about my car not working?)

Really and honestly, I’m at wits end. I just don’t have the brain or body spoons to deal with this in any kind of rational manner. All I can do to keep functioning is only deal with what is right in front of me in the exact moment it exists in my field of view, and try very hard not to look at my life in any sort of detail. Life would be, oh, six hundred times less stressful if I could somehow be back in Germantown, so all these doctor visits would be half an hour rather than two, but that doesn’t seem to be a negotiable point right now.

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The Dreaded Follow Up

April 12, 2012 at 3:28 pm (Hospitalizations, Medical) (, , , , , , )

I saw Dr. WLS for my first post-op appointment yesterday. It was just about as bad as I expected. I have witnesses who will tell you it wasn’t horrible, but there were lots of questions and innuendos that I could have happily lived without.

I have many friends who live in disbelief that this guy, who already knows that I was denied WLS by my insurance once, is still pressuring me to get the surgery. As I waited for his assistant in the room, the Jaguar (my trainer/nutritionist) examined the poster with the various surgical options on it – the Roux En Y, the lap band procedure, the the gastric sleeve, and the duodendal switch – and even on the poster it listed the various deficiencies one has to deal with for life if one chooses that surgery. They all thrive on malnutrition. There are no long term studies on the effectiveness, or on how they impact other health factors. Some of the mid-term studies that are coming out now show that over 50% of WLS patients regain some or all of the weight due to restretching the pouch/sleeve. Many patients do not adapt to the lifestyle that comes with having the surgery, because they were so pressured into it that they never considered what life would be like five years down the line. It’s one thing to commit to a lifestyle change in the present, but it’s a whole different animal to learn that there’s no “giving up” if you don’t like it, if you don’t like the new you, if you don’t like how it changes your life.

Now, I know I have many friends for whom this surgery changed their life in a positive way, and I mean them no disrespect. I believe WLS is an incredibly personal decision, like any sort of body modification, and you shouldn’t be bullied, pressured, or otherwise pushed into having it, or even considering it, if that’s not what you want to do to your body. I feel like the treatment I have received from Dr. WLS is as though someone was standing there in front of a trans man telling him, “You won’t truly be a man until you lop your breasts off. You’ll never pass, no one will ever see you as a man, you won’t be able to live a full and meaningful life if you don’t have a masectomy right now.”

I can carve you up like an ice sculpture!

Do I feel that being obese (even morbidly so) is a good thing? I think it’s just a thing. We all have unhealthy things in our lives. Some of these things could be solved by surgery. Many of my friends have hernias that they’ve suffered with for years, but since they aren’t emergent, they haven’t had the operation. At any moment, my appendix could go rogue and explode on me, but I don’t feel the need to have it removed today. I don’t know anyone in perfect health, who couldn’t use some sort of medical intervention. But no one gets hassled about it the way fat people get hassled about WLS.

Anyway, so there I am in the room to talk about my hernia surgery. The nurse asks me a bunch of questions about my diet – and when I give her honest answers about being on a strict plan to help lower blood sugar, rebuild myelin, and the like, she writes nothing down.  She asks if I have been supplementing with protein shakes. I tell her not only no, but if that’s mentioned I might stab someone, because the last time I was on the protein shake diet I got seriously ill. She definitely doesn’t write that down, either.

I took a picture of her intake notes and this is what it said.

Dr. WLS’s assistant, we’ll call her PA Perky, comes in. She claims to remember me from the last time I was there. Before she even asks about the surgery, she asks if “we can get back on the ball with the weight loss.” I tell her I’m not interested, that I am seeing a trainer/nutritionist who is helping me, and that the protein shake diet made me very ill. She gets very fakey-disappointed. As the appointment progresses, she decides to take out my staples. However, she calls Dr. WLS in to look at my scar, and together they decide that maybe they should only take out every other one, since the scar site is under a lot of stress. I tell Dr. WLS that a lot of my post-surgical pain is because the scar is in a very difficult place on my body – right where my belly ends and my mons pubis begins. He claims it’s in the same site as the old scar. This is not true – it is a good three inches lower. The assistant tries to give me the same song and dance about how my scar could “unzip” and I could have organs falling out. My trainer makes a face –  she knows that my organs would have to miraculously make their way through my ab wall and the layer of fat before they’d do that, and that would take something traumatic, not just a little pressure on an external scar. But this is the exact line they used last time to scare me into WLS.

Before you say it, I’ll be clear, here. I am never having surgery with this doctor again. Next time, I *will* go to one of the other hospitals in hopes that they will see how serious I am about not wanting to discuss WLS. I just have to put up with him through the aftercare of this surgery, and then I am never going to see him again. Unfortunately, it’s going to take some time, because my drain is still putting out a fair amount of drainage, which means I will likely have to have it in for a few weeks.

And this time around, Dr. WLS has even more invested; he now sells a line of protein shakes and vitamin supplements in house, where I’m sure he makes a nice percentage. He also has a sleep study doc in house, so maybe this isn’t the first time he’s gone tete-a-tete with my neuro (whom I met when I needed to have a sleep study as part of my pre-WLS examinations). But a friend reminded me of something I’m going to use from here on out when WLS is brought up – since my insurance doesn’t have it as a covered benefit, and we know that for certain now, every time they bring it up I’m going to ask if they’re willing to do it pro-bono. If not, they can stop offering me a procedure that isn’t covered by insurance, please and thank you. (Although I’m almost scared that he’d say yes.)

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This is Not The Surgery I Ordered, Sir

April 9, 2012 at 11:10 pm (Hospitalizations, Medical) (, , , , , , , , , , , , , )

I got a gentle nudge that I hadn’t written anything about my surgery in specific, and how the recovery is going. I can’t promise I’ll share all the horrid details, but I hope you’ll feel like you know what’s going on.

So last Thursday I started having lower abdominal cramps around 4pm. (Right after I posted, in fact.) I get these from time to time, and lately I’ve had some serious hurty bouts of them, so I figured it was one of those and slowed down and started watching my Netflix and trying to wait it out.

About two hours later, I started getting seriously nauseous. Also not alarming for Dels, so I took one nausea med, and then the other, stronger one when that didn’t seem to help. The cramps were getting pretty serious, and showed no signs of slowing down.

I really fought the idea of going to the ER, because I’ve been to the ER with ab pain before and one of two things happen – either they find nothing and I go home and eventually feel better, or on rarer occasions, it’s something really serious and I end up going through a medical ordeal. Neither of these appealed to me, and usually if I just wait, they go away.

I tell Ninja that if I”m still in pain at 8:30 I’ll entertain the idea of going. It comes and goes. Maybe the cramps are getting better, or maybe I’m convincing myself of this so I don’t have to go to the ER. 9:30 comes and goes, and it’s getting worse. Finally, at 10 o’clock we decide that at the very least, I might be able to get some heavy duty pain meds if I go, so we find someone to take us (yeah, remember that we both don’t drive? So we were calling friends at 10:30 at night looking for someone to take us!) and go directly to the actual hospital and not the more local ER extension. Although I’ll be seen faster at the extension, if it’s serious there’s only so much they can do before they have to transport me via ambulance to the “real” hospital, so we might as well just go there.

Let’s cut to the chase and say that I was in the ER for 36 hours without sleep or food. They kept moving me around, and once tried to move me to Labor and Delivery. They let me know that I needed surgery by telling me they had called The Weight Loss Surgeon (we’ll call him Dr. WLS) with whom I have some bad history. I wasn’t thrilled, but I knew why they did it – he’s also a general surgeon and because of his experience with bariatric patients, he’s the best surgeon to do abdominal surgery on someone like me. I later learned that I had a ventral hernia – my second – and it needed to be fixed.

This is what a ventral hernia looks like from the inside. Basically, part of your intestine breaks through the abdominal wall and can get trapped. It hurts quite a bit.

Dr. WLS shows up and the first thing he says to me is, “Weren’t you supposed to have weight loss surgery by now?” He and I have a bit of a back and forth, with me telling him that my neuro thinks that the rapid weight loss I experienced while under Dr. WLS care last time caused or exacerbated my neurological condition. Dr. WLS disagrees, telling me I likely have early onset Parkinsons (!!), and he demands to know who my neuro is. I tell him, and later on he actually called the neuro to demand why the neuro told me this when it was impossible. The neuro stuck to his guns, but Dr. WLS just dismisses this.

Anyway, I tell Dr. WLS that I’m not interested in weight loss surgery. He tells me that I have 3 options – I can go home and do nothing, but this is dangerous and can lead to serious complications, I can go to another hospital that “specializes in hernia repair” (he actually listed two other hospitals with bariatric units), or I can listen to his lectures on weight loss surgery and he’ll do the repair that night. He is surprised when I tell him I need time to think it over. I call patient advocacy and they aren’t pleased with these options.

Dr. WLS returns, a little cowed. We agree to disagree, and I make him promise that if he does the surgery, that he won’t bring up weight loss at all, or weight loss surgery in specific, until I’m seeing him in his office for surgery follow up. He agrees.

I am brought directly from the ER to pre-op, and I don’t know if I have a room to go to when they’re finished. They actually warn me that I may need to go back to the ER if they don’t have a room. This makes pre-op so much more fun. [insert Mike the Surgical Nurse story here]

The surgery goes well. I am wheeled into post op and I hurt all over. Not only from the surgery, but also from being in one position for so long, and also because I’ve had all kinds of tubes in me, some of which were still in (a nasal trumpet, which sounds more whimsical than it is, and a foley catheter). After a few hours, I’m taken up to a real room.

I was given an epidural to help with the surgical pain. It does okay – I still felt some discomfort when I moved, and I was hitting the dose button often – but I end up going into opiate withdrawal because they deny me my maintenance pain meds for over 48 hours and the epidural isn’t enough to ward that off. The hospitalist decided I am on too much OxyContin and cuts my (prescribed by my pain doc) dose in half. Somewhere along the way, they also tell me that my A1C is three points higher than it was six months ago, and now I need mealtime insulin. I’m baffled by this but do not argue.

Unfortunately, it wasn't tequila. Might have worked better.

Fast forward through some bad  nurses. It gets to be time to remove the epidural. Dr. WLS tells me that they’re going to walk me from the epidural to IV pain meds to oral pain meds. This is not what happens. They take the epidural away and I am given less pain medication than I take on a day-to-day basis to cope with the surgical pain. Obviously, this fails to quell the pain I’m experiencing. I stop eating food, and when doctors/nurses try to encourage me to eat, I tell them that I want to, and I will when my pain is below an 8. It takes almost 12 hours before finally I’m given a bolus of IV dilaudid, and am given the option of IV push pain meds to supplement the orals.

However, I’m totally guilted by everyone – the hospitalist, Dr. WLS, and even the nurses – every time I ask for IV meds. I can’t go home until my pain is controlled by orals, they say. I tell them that it’s insane to think that my day to day maintenance drugs are going to be enough to cope with not one, but three incisions in my abdomen, one of which is on a part of my body that experiences a lot of pressure when I sit up or walk. Even the night before I was discharged, I got a dose of IV meds. But they’re so keen to send me home, and at this point I’ve had less than six hours sleep in six days, I just nod my head and agree to whatever they say.

I get home and call my pain management doc just to inform them that I was in the hospital, and that I was given a med to deal with pain but that it was cleared by the hospital with them. They tell me that no one ever told them about the med, and if I have already filled it I am in breach of my contract. Thank the Gods I hadn’t. I get their okay to fill the med, but only if I stop taking my other breakthrough med. This sucks because the hospital’s plan was to augment my regular drugs with the new drug, not replace one of them. So needless to say I’ve been in some pretty bad pain since I’ve been home. But I have slept like I invented sleep, and that’s been good.

Just keep going until you feel less sugary, I guess.

If that weren’t enough, I was sent home with insulin, but with no instructions on how much to administer. I had to call the hospital’s diabetes educator, who was deeply embarrassed and shocked when I told her that no one told me how much to give myself. What’s funny, is that since being home, I rarely test high enough to warrant insulin, and when I do, it’s just over the limit for the lowest dose. I am having my A1C retested at my primary care doc’s next week; I think something hinky is going on.

 

Tomorrow I see the pain doc, and I’m praying together we can find a way to get my pain under better control. As of now, I can basically lay down (on one side, because I have a drain in the other), sit up for short periods of time, and waddle to the bathroom. Anything more than that is too taxing, pain wise.

The other surgeries, the D&C and the ablation, are on hold for now. I’m hoping to be well enough by mid-May to get them then.

And I’m bringing my nutritionist/trainer to the follow-up appointment with Dr. WLS, so she can tear him a new one if he tried to put me on protein shakes or threatens surgery. I like having attack jaguars.

So that’s where things are. I hate that this happened, I hate the timing of it, I am very serious about wanting to address why I keep having hernias (I have a weak ab wall; my trainer is all over working on that once I am healed from surgery), but for now all I want to do is sleep a lot.

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A Patient Patient

March 31, 2012 at 8:47 pm (Uncategorized) (, , )

I am in the hospital, updating from my phone. I went to the ER Thursday night with cramping gut pain; it turned out to be my third hernia and I had surgery Friday night to fix it. I am doing all right, but have some incision pain and I don’t walk so well. I should be home in a day or two; I will write a better update the

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