Breathing in, Breathing Out: Tonglen

April 18, 2012 at 1:32 pm (Chronic Pain, Disability, Living, Living With Chronic Illness, Mental Health, Tuberculosis (Inactive)) (, , , , , , , , , , , , , )

There are two topics that have been vying for blog post-dom, and then I realized that maybe they can coexist in a single post. One is how I use the meditative practice of tonglen to help deal with my health issues, and the other is how I struggle with well-meaning people who think I don’t know how to google. I know, it doesn’t sound like they can be the same post, and it may take some literary magic on my part, but let’s give it a try.

First, I should explain what tonglen is. Most Pagans, when utilizing meditation as a way to deal with stressful things, visualize that the in-breath is the inhalation of that which is good/useful/healing for the situation, and the out breath is the exhalation of that which is unwanted/bad/hurtful for the situation. Breathe in relaxation, breathe out stress. Sound familiar?

Tonglen, a Buddhist practice, looks at this practice and sees that it’s kinda backwards. Sure, it works in the visual sense, but not in the physical sense. When someone is inhaling, their muscles are tensing as their body adjusts to the action of the intake. Breathing in, in this fashion, is an action. In comparison, when someone is exhaling, their muscles are relaxing as their body returns to a base state. Breathing out is a reaction to breathing in. Do it now – take a deep breath in, and then let it out. After which one do you feel more relaxed, more at peace, in general, better?

So when practicing tonglen, on the in breath you think about all the people, places, and things that have experienced the same frustration, pain, or stress that you are dealing with. I breathe in, and I think about all the people who are at home right now trying to recover from surgery but real life keeps getting in the way. I hold the breath for a moment, to give myself the freedom to really feel the frustration and pain not only of my own situation, but multiplied by all the other people on the planet who feel the same way. Then, on the out breath, I send love and patience and healing to everyone I am sharing this experience with, including myself. After all, I am a subsect of “all the people struggling with recovering from surgery”.

I find this helps me in a lot of ways. It reminds me that there is no human experience that is not shared. No matter how much I feel isolated because of my complicated medical situation, I know that it’s statistically impossible that I am the only person on the whole planet who is as medically complicated as I am, and I bet there are many who are worse off. So before I even begin the actual practice, just the thinking that leads to it is useful. I am not alone, and people have survived this situation before.

Then I breathe in, and I really allow that sensation of frustration to tense my muscles, to contort my body in whatever way will give me the most focus on how yucky it feels, and how terrible it must feel to all the other people who are suffering in the same way I am. I give myself permission to feel bad about it, to feel a little sorry for myself, to fully engage in my emotions.

And then I let go.

My body relaxes. I cultivate love and patience for other people (which is usually much easier than doing so for one’s self), and then slowly apply that same love and patience inward. The more I breathe, the more relaxation I feel. The less tension I feel on the in breath. The more I feel like I am connected with a band of strong, inspiring people who struggle in the same way I do.

I practiced a lot of tonglen in the hospital. In – I think about all the people who are waiting in this ER, who have been here as long or longer than I have . Out – I send them patience and ease as they get the best possible outcome for their emergency. In – Many people are frustrated at their nurse, who is slow to respond and has her own agenda. Out – I send love to both those who lie in wait for care, and to the nurses who are having a bad day due to inpatient patients.

It is invaluable to me when I get totally overwhelmed by all the medical shit that’s been going on for me. I was just telling a friend that if you had told me six months ago that I was in the calm before the storm, I would have laughed at you. You mean having inactive TB and dealing with a new neurologist is the “calm” time? Right. Now things have grown so exponentially more difficult and complex, I can barely make it through the day without crying.

When I get frustrated, I frequently post to Facebook, or to my blog. As I’ve discussed before, my friends and readers want desperately to feel of use, to do or say something that might help the situation. The current favorite is to tell me to report Dr. WLS to “the medical boards”. They post links that take a few minutes of googling to find. I breathe in, because I, too, have google and have looked at those same pages, usually before you post them. I breathe out, because I know that they did that because they love me and want me to be happy and well. But what I can’t seem to communicate effectively is that my medical situation is a big tangled web, and the only person who really knows how it all works is me. I’m willing to share it with someone who really wants in, but being in means a lot more than reading my blog and trading a few emails. It means going with me to the doctor’s appointments to hear what they’re saying. It means personally understanding what it’s like to have doctor’s appointments three days a week when you don’t drive, and most of them would cost more than $50 by taxi. It means understanding that I, too, have Google, and do actually spend time researching things like where to effectively complain about Dr. WLS.

You'd think this is an exaggeration, but replace Blondie here with a fuzzy haired Del and it's about accurate, books and all.

I breathe in for all those who hate Dr. WLS for what he’s done to me, and I breathe out patience. Yes, technically I could probably seek out another surgeon to take over my aftercare. But they aren’t the surgeon who performed the surgery, and therefore they’d be relying on whatever Dr. WLS tells them (and not me, because I am not a surgeon). This is what I was told when I cold-called another general surgeon about possibly being seen as a ‘second opinion’. Starting from scratch with a brand new doctor in any situation is difficult, and I know this because I’ve seen five different neurologists, two different infectious disease doctors, two different primary care physicians, etc. So in the end, I choose to get frustrated and abused by Dr. WLS then go through the rigamarole of seeking out a different surgeon. If this means you’d like me to stop complaining about him, because it’s my choice to see him, then I will.

I try to illustrate my current medical situation this way: Imagine a Del. Now imagine over the Del’s head are a series of balloons. Each one represents one of the medical situations I’m currently facing. One balloon says, “Emergency ab surgery/recovery/scar in a place on the body under a lot of stress/too much edema”. Another balloon says, “Unexplained chronic pain”. Another says, “Needs a D&C and ablation or could get cancer.” Another one is labeled “Has inactive TB, which could go active at any moment, and really the only organ we know how to help if it gets attacked is the lungs. Also, you have a history of infection, so it’s likely to go active.”

Kinda like this.

For any one person, this balloon (pick one) would be their entire existence. They would be focusing all of their free time on researching what to do, contacting doctors, going to doctor’s appointments, taking whatever treatments are prescribed, and changing their lifestyle to accommodate this balloon. I don’t have that luxury. I have too many balloons, so many that they’re threatening to carry me away to a place called Death. I’m doing as much as I can to keep up, without forgetting that I’m also a human being that needs to eat and sleep and spend time with friends and watch Glee and feel normal from time to time.

Maybe you’d handle it differently. Maybe you’d go all gangbusters and spend every waking minute doing whatever it takes. I can’t, because I feel like crap and I’m tired all the time and I’m in a lot of pain and there’s only so many kinds of effort I can give before I can’t anymore. In the end, it’s my body and my life and I have to do with it what I think is right, and many times I choose the “feel like a normal human being” over the “holy crap balloons”. On average, I have at least one doctor’s appointment a week (these days, it’s closer to two or three). I make at least six phone calls, emails, or other forms of contact dealing with my medical situation a day. I spend an hour or two with Google, looking related tI hings up (everything from who to send the complaint letter to about Dr. WLS that will actually matter, to how other people dealing with chronic pain cope with the added discomfort of surgical pain, to how long I can put off that D&C until I’m really risking cancer).

But for now, I will breathe in all of your frustrations, all of your desires to be of use, and to be helpful, and the feeling I know intimately of seeing someone you care about suffer and know there is nothing you can do. I breathe out love, and patience, and compassion, and understanding. I do love all of you, even when you drive me a little bonkers.


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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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Mike the Surgical Nurse

April 5, 2012 at 11:01 am (Hospitalizations, Medical) (, , , , , , , )

I was admitted to the hospital on Thursday evening and had an emergency ventral hernia repair on Friday night. A lot happened throughout my six day experience, most of it pretty bad. I promise to give a more detailed account soon. But I had this singular experience on Friday night that I wanted to share all by itself, so that’s what I’m addressing in this post. More information to come.

As a member of the human race, the idea of a group of strangers standing around my unconscious naked body while it is being cut open and organs lay bare, makes me a fair amount of nervous. Even when I know it’s the best option to heal and feel better, once I have signed the necessary consent forms in pre-op I am now given a gentle sedative just so I can remain functional enough to follow instructions and pay attention to what I’m being told. And as this surgery was completely not on my radar when I went into the ER the night before, and there had been some crazy drama in the hours leading up the surgery, I was pretty emotionally wrung out and keyed up at the same time, which is difficult on a body.

I don’t remember from my previous surgeries if pre-op always seemed so rushed, or if it was this experience on its own, but there were two nurses and two doctors asking me questions and examining me all at the same time, while also instructing Ninja as to what he should be doing as well. I was really losing grip on any sense of stability, and that’s even after I started employing meditative techniques that I practice specifically for situations like these. I was also in a great deal of pain, which didn’t make things easier.

The sedative starts to slow down my heart rate and my breathing, and I see the socks. At first, I wonder if maybe the Versed is affecting me in a whole new way and I’m seeing things now. I take a quick assessment of the space around me, to see if anything else seems odd or unusual. Nope, the only unexpected thing in my line of sight is that this person has the bottom of their scrubs tucked into a pair of pink and green argyle knee socks.

Not actually Mike. I chose this photo because these are, colorwise, the right pinks and greens. Also, I'm pretty sure Mike is the hairy-leg kind of guy.

I unfocus my attention from all the bustle and questions and fear and take a moment to look at this argyled person. He was about six foot three or four inches tall, with a state-school-football-player’s build. He had rusty red hair tucked into the surgical hair net, and a short, just slightly wild looking red Van Dyke. The last two thoughts I remember in this slow-motion Matrix moment was that a) boy, it’s been a long time since I found a tradtionally-masculine-looking, cisgender man attractive, and b) boy, I find this traditionally-masculine looking cisgender man attractive. (I admit, I had no way of knowing if Mike was cisgender. I was more musing on the fact that he ‘read’ that way to me and it wasn’t a deterrent.)

“Nice socks.” I break out of the reverie and find myself feeling the Versed more, as usually complimenting someone I find attractive pretty damn nervewracking.

He starts talking to me, and all of a sudden I’ve completely forgotten that in just a few moments, someone is going to be slicing my belly open and unkinking my intenstines. He gets me into the stretcher to wheel me into the OR (which he calls “his”, even though he’s not the surgeon) and usually at this point, Versed or no, I’m beyond comprehensible thought. Instead, I’m able to help transfer me to the operating table while discussing our tattoos and how he flies home to Mississippi to get his done because that’s where the artist he’s been going to since he turned 18 is.

I have to get an epidural to help with post-operative pain, and because of my body shape I have to hold this kinda uncomfortable position while the anesthesiologist does whatever he needs to. Mike helps hold me in position, and we talk about my experience of getting songs trapped in my head when I go under general, and how he wishes they could allow patients to request what music they listen to before they go under. I don’t remember what was playing, but I remember we both liked it.

Should have known this was an odd looking "oxygen" mask

I laid back down on the table and went through some last minute positioning things. Mike rubs my arm as my eyes begin to tear up a little, because I realize that I’m going to be in the same position for an unknown amount of time and oh yeah, that’s because they’re going to cut me open and blah blah Del is made of meat and people die on the table and blah. He tells me I’m going to do fine, and the anesthesiologist puts a mask over my face and tells me to breathe the “oxygen”.

(That’s the one part of my actual surgical experience that pissed me off. Normally, they do the whole, “This is the general. Take deep breaths and count backwards from 100.” It’s purposeful, I know what’s happening, it’s all above board. This time, it was a little underhanded. I mean, I totally think they did it that way because I was having such a hard time emotionally they didn’t want me to have an anxiety attack when he said, “Okay, we’re about to begin.”)

The next thing I am aware of is being wheeled into post-op. I desperately try to figure out if Mike is there, but I’m too out of it and can barely keep my eyes open. I never see him again.

The PS to this story is that at another point later in my stay, I am seen by some surgical assistants. Either Ninja or I mentions Mike, and all of them go on about what a great guy he is and how they like working with him. Ninja then mentions that it would mean a lot to me if he would come by for a visit. I must have turned six shades of red.

He never came. But meeting Mike, and the emotional support he gave me through the scariest part of the whole experience, is something I not only won’t forget, but will strive to give to others. Ordeal workers need Mike the Surgical Nurse too.

"It's going to be okay in the end. If it's not okay, it's not the end."

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