The Magic Number

August 8, 2014 at 2:26 pm (Death and Dying, Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , )

Hey there, dear readers. Before I begin, I want to apologize. When I started this blog, one of the main reasons was so I could share information about my health in a timely manner from a centralized location – so I didn’t have to post to every single social medium and then answer comments from them as well – but this time I didn’t feel ready to blog about coming to Johns Hopkins ER or why I came in. I’m still not ready to write about all of it. But here is a little information, a little navel gazing, and a little update. -Del

A while ago, back in March, I started taking on some serious edemitous weight (what we non-medical types call “water weight”, “edema”, or “swelling”) – one doctor guestimated I had gained 50-70lbs of swelling (and he was pretty close to exactly right). I began seeing a long and complicated list of specialists, each of whom happily pointed to one another as the doctor who could help me tackle this once and for all. I was bounced from cardiologist to infectious disease to primary care to nephrology and around again. I got put on several different combinations of drugs, kept on using the pneumatics when I could, tried to limit my fluid intake, etc, etc, etc.

I will admit, I was feeling pretty defeated. Not only did each doctor think it was definitely a SEP (Someone Else’s Problem), but none of them treated it like a big deal. When I had to buy new shoes 3 sizes larger, I barely got a shrug. To me, my Non-Violet Beauregard impression felt like something pretty hazardous but even when doctors was using scary words like “organ failure” and “amputation” they did it with a resignation usually used about troublesome boys.

After all, the list of symptoms I had –

  • Extreme Fatigue
  • Shortness of Breath
  • Apparent Weight Gain (Swelling)
  • Lack of Appetite/Nausea
  • Sleep Disturbance

– could all (and were) attributed to being obese/sedentary. When I showed my primary doc that I was losing my breath just from standing up and buttoning my pants, we had a ten minute conversation/debate; she was forceful with her opinion that I was decompensating. (Basically, the opposite of ‘getting in shape’.) I kept arguing that even if I was truly decompensating, I was pretty sure it wouldn’t happen that fast and that dramatically.

But all along, everything that popped up she immediately tried to relate to my weight. In fact, when I came back to her after getting the diagnosis “Volume Overload” (Totally my Del Tashlin cover band), she weighed me to confirm that I’ve had a radical weight change – 60ish pounds in 3 months.

But to me, that wasn’t the shock. It was the magic number. I think we all have one. It may not be the same statistic, but there’s a number somewhere in your life that fits the category.

  • “If I ever have to buy my pants at Lane Bryant, just shoot me.” (number implied)
  • The day my scale says 300lbs is the day I lose my shit.”
  • “When I can no longer buy clothes at the mall because I am too big/short/tall/etc, I will have to kill myself.”
  • My cousin’s bra size is a 44G. I’d rob a bank to get a reduction before I would live like that.

There I am, standing on the scale looking at the highest weight I’ve ever been. I’m not seeing the magic number, but I’m very close to it. I take a deep breath and start reminding myself that it is edematous weight, swelling, something that will go away once they figure out what is causing it. Maybe a few tears roll down the side of my face, because it’s a number I wasn’t ready for that day.

As we go back into the exam room, my doc makes a comment about possibly revisiting the weight loss surgery conversation. Anyone who has followed my story from the beginning can probably guess how that conversation went. She’s trying to assure me that just because I had ONE bad experience with ONE doctor should not mean I reject the possibility forever. I am trying to clarify to her that this weight is not “Del ate some extra cheetos and skipped aqua aerobics” weight, but “something is physically wrong with Del that is causing water retention at a ridiculous level”.

I left the appointment feeling pretty sure that my GP wasn’t going to be any further help in this situation. Once again, I’m thinking I might have to go looking for someone new – especially in light of what has happened. In the most obvious application of the metaphor, I came to her with a list of symptoms of a serious medical problem of immediate need of treatment, and what she saw was a fat, lazy person who wasn’t taking care of themselves.

I got so disheartened, I stopped giving a shit. I still took my meds and the like, but I stopped making doctor’s appointments. I lost my fire. Inside I knew that something serious was going on, but it was as if I ran around the village telling everyone the Monsters are Coming and the village reacted with affected apathy. It wasn’t until Rave and I noticed that the swelling was getting markedly worse, and now was happening faster than before, that we decided something had to be done.

Now I am inpatient at Johns Hopkins and I know for certain what all my symptoms were caused by and what the short term plans are to get me going home, at the very least. As I discussed things with Winter last night, he asked me what he and the Clan could do to support me in this time, and I paraphrase for you, dear reader, as well:

I feel like I need some time to wander in the dark, bump into the walls, wack my toe on the moulding. I need permission to let this filter in slowly, rather than jump to branding it on social media for the 140 characters times worth of edification faded into the next cute cat meme. I don’t want to have to educate each and every person I talk to about what it is, how I got it, and how we’re treating it. I just want to sit with this for a while, think about it, run my fingers around the edges and see if there’s a contingency envelope hidden somewhere.

When I’m ready, I will share everything on the blog and you will all know what’s going on. Until then, for now, it’s just mine to feel in all the ways I want to feel it.

(And the good news is, I’ve already lost 15 lbs away from the magic number, so that’s reassuring.)

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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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Fat and Disability: The Touchy Subject of Choice

February 22, 2012 at 6:38 pm (Disability, Medical) (, , , , , , , )

I have been gifted with a body. Whether you consider that gift something your parents gave you, or some cosmic dust exploded together by giant Invisible People isn’t necessarily the point in this essay. I just know that there was a time where I didn’t have a body, and now I do, and it’s my job to take care of that gift in the way I see best.

There are lots of people, some of which who have studied many other people’s bodies, who have strong opinions about how best to steward a body. Some people with bodies find something that makes their body and/or them happy, and they start thinking that if it did good things for them, everyone else should do it too. Some of us face bodies that do things we do not like, and we either come to a place of acceptance that our body has changed, or we fight this process by changing the way we steward the body.

Over time, we as a society have become incredibly judgmental about how other people take care of their bodies. We see people make decisions that don’t make sense to us, like smoking cigarettes, and we jump to the body’s defense. Rarely do we ask the person owning the body if they’re happy with their decisions, or are ready to change. We just see something we wouldn’t do with our body, and we assume that no one should do that with their body.

Maybe we’ve even seen other people, people we’ve loved, do things to their bodies and had their bodies decay and die because of them, or due to other things that came from those decisions. My father, for instance, smoked three packs a day. He made many decisions I didn’t agree with, including choosing to live separately from my mother, so he could continue to smoke. I know it doesn’t make sense to most of us, but to him smoking was important to the way he experienced being embodied, important enough that when his body started to change due to his smoking he chose not to quit. When his life changed due to his smoking, he chose not to quit.

Does this make me angry? Yes. I believe my mother deserved better. I believe my father deserved better. But we all make decisions about our bodies that make others unhappy. I don’t know where I heard this, but it went something like, “There’s a reason lung cancer doesn’t have a pretty ribbon you can wear on your lapel. That’s because society thinks that people who get lung cancer are all smokers, and they’re all at fault for their disease.”

I have had an abortion. This made my father very unhappy. He felt it was unnatural. But it wasn’t his body, so it wasn’t his choice. I know there are people I know who think that abortions are terrible things to do to your body. I am glad we live in a place where I had that option when the situation arose.

But this is supposed to be an essay about disability. I have been taking part in online conversations about the intersection of fat and disability, and it lead me to think about this whole concept that what I do with my body is my own business. When someone decided to tattoo their arms, it could affect their lives. They may be turned down for jobs, or potential loves, or places to live, due to the conceptions we have about tattooed bodies. However, when someone has a larger body, it become everyone’s business, and it’s completely socially acceptable to reduce someone else’s body stewardship to the size of that body.

There are “fathletes”. There are professional dancers, runners, sports players, who aren’t lithe. Look at Babe Ruth! Not lithe in the least. So do we judge bodily health based on athletic prowess? If I can walk six miles, or one sixth of a block, does that make me more or less healthy?

There are fat people who do not eat excessive amounts of food, and who have never eaten an excessive amount of food. In fact, I have been forced on so many diets in my life, I probably have eaten less over the span of my 37 years that non-fat people I know. The whole concept of bariatric surgery is based on the concept that fat people eat too much food, and as we look at some of the emerging long term studies of what happens to bariatric patients bears that out – many restretch their stomachs to factory-standard size and regain weight 10 years after surgery. (Others do use the surgery to retrain themselves to eat much smaller portions, and therefore the surgery works wonders. What I’m trying to say is that it is not the cure-all some people claim it is.)

There are fat people who make healthy food choices. On the other hand, there are lithe people who make terrible food choices, and suffer health consequences from it. But as a society, you rarely see someone accost a thinner person on the street or in an eatery and shame them for eating food we think is unhealthy or inappropriate. In fact, I think it’s more socially acceptable to shame a fat person eating an ice cream sundae, than it is to engage a pregnant woman in a conversation about smoking and drinking alcohol during their pregnancy. But no one thinks to shoot a thin person nasty looks when they order a triple burger with extra cheese. And you know what? Their bodies suffer from their choices too. I know it might surprise you, but thin people also develop type 2 diabetes, high blood pressure, and high cholesterol.

And there are fat people who suffer from disabilities. You’re right, sometimes we gain weight when our disability makes exercise and eating healthy food difficult – this is something I’m struggling with right now, and am about to embark on addressing with a nutritionist who knows about my limitations and is willing to come up with a plan. But as those of you who know me know, I was fat way, way, before I was disabled. So it’s not that my fat disables me; in fact, some of my symptoms get better when I gain a little weight. Also, not being able to eat or hold down food is definitely part of my disability, and so when I can eat,  and maybe gain a little weight as a side effect, it means I’m doing better.

I’ve written elsewhere about the fact that when I lose a great deal of weight due to my illness, it feels really odd to me how many people tell me how fabulous I look and how I should keep it up. In fact, there is one person that I see many times in the summer, who suggested that if my illness caused me to lose weight, then it was a good thing I was sick. It boggles me. It’s so ingrained in us that being thin means being well that we ignore the reality of other people’s bodies.

But what really makes me angry is that if I choose to be fat, or if being fat is a choice thrust upon me, I am barraged with messages (both overt and covert) that say, “If you lose weight, things will be better for you.”  No other life choice gets so much public scrutiny about how it relates to your health. People who decide to stop taking medication don’t get crucified; people who engage in risky sports don’t get harassed on the street; people who engage in addictive behaviors that decay the body are excused or ignored; but it’s completely acceptable in our society to substitute my coke for diet coke without asking (because diet coke is better for me, says you, a non-owner of my body) or to emphasize the fat content of the food I eat, or encourage me only when I am actively trying to lose weight.

This happened: I was at a local outdoor concert venue. The disabled parking was in a radically different place than other parking. Since I was walking with a cane, and long distances were difficult for my pain condition, and I have a legal parking placard, we chose to park in disabled parking. As I exited the vehicle, a man came charging up to me and loudly pointed out I was parked in a handicapped space. Mistaking him for a staff person, I pointed out the placard hanging from my rear-view, and offered to show him the documentation I carry that proves the placard belongs to me. It turned out he was just some attendee, and turned the conversation turned into one where if I walked from the lower parking lot, I wouldn’t be as fat, and I should leave that parking space for someone with a real disability. I pointed out that in Maryland, you have to have a doctor’s note that qualifies you for a placard, and the state defines what sorts of challenges count as a disability for the sake of obtaining one. So neither I, nor my doctor, just came up with “Del’s too fat to walk” and voila! I had to have long term walking issues that were documented by my doctor. Not that any of this was his business anyway. Legally, all a venue can ask for is the card in my wallet that proves the placard belongs to me.

When I see doctors, the weight issue always comes up. Now, don’t get me wrong; many of the behaviors that lead to bigger bodies can also have an impact on your health. No one knows this better than a fat person. However, it’s incredibly assumptive that if someone has a bigger body, that they’re automatically engaging in some or all the behaviors that may lead to bigger bodies. Instead of making diagnoses based on my appearance, why not ask me about those behaviors? Ask me if I have barriers to exercise. Ask me if I eat portions that are too large. Ask  me if I eat foods that are known to lead to obesity. Because in that process, you might find out things that have nothing to do with my weight.

For instance, right now, my big issue around food is that most days, my pain is too high to climb a set of stairs. Therefore, I don’t have access to a kitchen to prepare my food. Most of the food I eat is processed, shelf-stable food. I just recently put a mini fridge in my room so I can store some perishable stuff, but not much. So I’m not eating the best food for my body. On top of that, exercise is very, very difficult for me. I tried to do the Time Warp this weekend and I almost fell to the floor because my balance is way off. It is unsafe for me to go for a walk by myself, not to even address the chronic pain and neurological issues involved. But doctors don’t ask me about these things. They just slip me a brochure about bariatric surgery or medical weight loss. They just mention that if I weighed less, I’d probably have less mobility challenges.

In the end (because I’ve rambled enough about this), I’m very likely going to die a fat person. And I’m totally okay with that. I wish other people could be as okay about it, or at least accept that they, too, have ways that they treat their body that aren’t perfect, too.

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