If you’re reading this, you likely know something to the effect that I’m a type 1 diabetic and an art therapist whose professional and advocacy work is directed towards helping people with diabetes through art. Towards that goal, I facilitate Diabetes Art Day and the World Diabetes Day Postcard Exchange, I have a small art therapy practice, I spread my passion for art through Facebook, and to a much lesser extent, blogging and twitter, and I’m working on my doctorate with plans to do research on art therapy for people with diabetes. I do all of this because I believe in the healing power of creative expression for people with diabetes.

Sometimes I’m overcome with doubt though, not in the potential for healing through art, but in my ability to effectively demonstrate that potential such that others understand its true value. The reality is that no matter how much I believe that creative expression has the amazing capacity to heal people with diabetes, if no one else believes it, then my efforts, art projects, advocacy, and use of social media to promote art for healing don’t amount to much. The other reality is that I need to make a living, and let’s just say I’m not exactly raking in the piles of money. I thought that if I stuck with advocating, if I poured my heart into these projects and the work that I do, that eventually I could cover my own costs, plus pay a few of my gazillion copays, but so far that hasn’t happened.

So I’ve been discouraged and increasingly questioning how much time and effort I’m dedicating because it’s not fair to my family to continue chasing this dream at the expense of more practical things. I’m discouraged because I don’t know how to continue the work that you know me for at the level I’ve sustained. I need to reevaluate my vision, and alter my course, or at least change my pace. I’m not sure yet what that means for my various advocacy activities, but as I figure it out, I’ll let you know.

Despite this need to reassess from a practical standpoint, I will never stop believing in the infinite healing value of art for people with diabetes. Until there is a cure, there is healing through art. If you haven’t discovered it for yourself yet, a real treasure awaits you.

I know, I’m a little late to the Diabetes Blog Week game here. I had several ideas for what I wanted to write in response to Monday’s Diabetes Blog Week prompt about appreciating our differences, but my intentions got derailed. Late Sunday and most of Monday, I was in tears over Mother’s Day, a reaction that really took me off guard. In recent years, I’ve definitely had some ambivalence about it, but this year, my emotional response was off the charts. It’s a complicated issue though so maybe I’ll write about it another day. Also, I’m sitting in a restaurant having lunch right now, and if I start writing about it I’ll end up weeping into my club salad, which would just be embarrassing.

On Tuesday, I figured I’d pull myself together, and write my letter for prompt #2 of Diabetes Blog Week. However yesterday, after several days of an especially chaotic and ugly ride on the ol’ glucoaster, I had a full-on blubbering meltdown over diabetes while recovering from a 45mg/dL. You know that scene at the end of Scarface? It was the emotional equivalent of that, an it’s-not-fair, I’m-tired-of-this-crap, why-the-frak-did-I-ever-think-blogging-or-the-DOC-or-glitter-or-anything-could-make-this-stupid-disease-better, I-don’t-want-to-do-this-bullpoop-blood-sugar-battle-for-the-rest-of-my-life, frik-you-diabetes-and-the-mother-frakking-urine-test-strip-and-NPH-bottle-you-rode-in-on implosion of monumental proportions. If you’re thinking, “Lee Ann is being polite, and offering the censored version,” you would be correct. I tried to funnel the emotional tsunami into a blog post, but it was nonsensical gibberish, and frankly, a massive downer.

So here we are, the third day of Diabetes Blog Week, and after the last few craptastic days, I’m going to see if I can belatedly get on board. Had I been on time, you’d think I was an impostor anyway. Maybe a little diabetes blooper lawlz action is just what I need.

There’s ample opportunity to lament the heartache that diabetes can be (see paragraph 1 and 2), so when diabetes offers up the chance to laugh, running with it is imperative to maintaining the delicate façade of sanity. Funny diabetes moments tend to be more funny after-the-fact than in-the-moment, but regardless, they’re the saving grace, the moments that make this disease, and life with it, bearable.

As I pondered humorous diabetes moments, one was more of a general occurrence than a specific incident. Despite my love of donning sundresses when it’s hot, since I started using an insulin pump, I wear dresses much less frequently than I once did. I know there are all kinds of devices to keep the plastic pancreas in place, but I never feel like they work as well as I’d like. Lots of ladies are all about nestling it between the girls, but regardless of what bra I try or how I position my pump, my bosom isn’t ample enough to do such things without it being glaringly obvious that something weird is going on in my top.

Without that as a viable option, when I wear a dress I have to use something that allows me to wear my pump on my thigh. I’ve tried pump garters, and I’ve tried the Thigh Thing. When I wear stockings, I’ve strung my pump inside and down my leg, and when I wear stay-up thigh-highs, I’ve placed my pump inside the elastic band. I’ve even slipped my pump into a baby sock that I’ve strategically safety-pinned to the crotch of my undies. Granted, I don’t think I did that more than twice before deciding I didn’t care for that thing dangling between my legs (more power to men who put up with that all the time…). No matter what I’ve used though, it invariably means that when my pump talks to me, my crotch beeps, and when I need to get to my pump, there’s an awkward, squirmy search and rescue mission. It’s not exactly a blooper, but you can’t say it lacks comedic value.

Most of my more memorable and funny moments have occurred as a result of low blood sugar. When I was 25, my significant other at that time, John, and I went to see Saving Private Ryan at the movie theater. Considering that poking my finger and sticking needles in my body is status quo, you’d think I would have a higher tolerance for blood and such in movies or on TV. As it turns out though, I am notoriously squeamish. In that respect, Saving Private Ryan was not the best movie for me to see, but I like movies about history and war, and I think that Tom Hanks fellow is a pretty good actor.

The opening scene with the beach landing is obviously pretty gory, and my low tolerance for blood made that unsettling on multiple levels. Many obliterated appendages, dead bodies, and much spilled blood later, and I started to feel kind of nauseous. About a quarter or a third of the way into the movie, during the scene when they cross the field as Germans are shooting at them (that probably sounds like the entire movie in a nutshell, but if you’ve seen it, you know which scene I mean), and the one character gets shot, in the abdomen I believe, I was feeling really sick, dizzy and potentially vomitous.

Then I blacked out, but only for a few moments because the next thing I knew, John had scooped me up, and was carrying me up the ramp, into the lobby, yelling at the bewildered teens behind the counter to get me some sugar. Those kids came to life like no one’s business, scrambling as John barked instructions at them. I don’t remember exactly what they gave me, but I think there was some kind of gummy candy, Swedish Fish maybe, and possibly some juice or regular soda.

Once I was more with it again, we returned to our seats to watch the rest of the movie. It wasn’t until John received the video as a gift from his parents the next Christmas that we got to see the movie in its entirety, minus seizures, black-outs and Swedish Fish. We did always chuckle imagining that our fellow movie patrons probably thought I was OD’ing on heroin or something.

Public displays of hypoglycemia (PDH?) can be ripe with entertainment value, after the fact of course, but more private moments aren’t immune from ensuing hilarity. Last summer on a sunny weekend afternoon, Jason and I were spending a low-key day at home. I started to feel low, and don’t recall now whether or not I checked my BG to confirm, but I remember going into the kitchen to get a shot glass of blueberry juice. I drank it and sat down on the sofa, waiting to feel better. The next thing I remember, I was sitting on the sofa, trying to figure out why I was topless, asking Jason what happened to my shirt.

“You don’t remember?” he asked incredulously.

Apparently I had interacted and cooperated with him, so he was surprised that I had zero recollection of what had transpired. The short version is that my low blood sugar got worse, and I suppose the memory part of brain was more deprived of sugar than the rest of my brain. Jason had me drink at least a couple more glasses of juice, and because it was a really sweaty low, he thoughtfully removed my tank top because it was drenched. He knew that once I recovered, I would get those post-low bone-freezing chills, and a soaking wet shirt was only going to make that worse.

The unfortunate thing about these entertaining stories of low blood sugar is that the person with me tends to tell it far better than I can since they were the more lucid participant, but you’ll have to accept my vague versions. While I haven’t fully extracted myself from the bleak place I was at with diabetes yesterday, and I know tearful moments are an inevitability, at least I know diabetes has a sense of humor, and it will deliver some laughs now and again.

Wednesday is the fastest hour on the internet for people living with diabetes. People from the DOC gather on twitter for the #dsma chat, facilitated by our own Cherise Shockley. Each week there is a theme, and Cherise asks the questions. It’s always wonderfully dynamic dialogue because we might all have diabetes, or be the parent of a child with diabetes, but the collective experience is varied so the responses are too.

#dsma

In addition to the weekly chat, a couple of weeks ago, Cherise and the crew over at the #dsma website initiated the #dsma blog carnival. Before you’re all like, “Carnival!”, the sad news is that there are no funnel cakes, tilt-a-whirls, or giant teddy bear prizes. The happy news, besides the fact that there are no clowns, is that there’s lots of bloggy goodness. Blog Carnival…

… is your chance to explore a recent DSMA question in more than 140 characters. At the beginning of each month, the blog carnival topic will be announced here on the DSMA blog. Join the carnival by writing a post about the topic of the month on your blog and sharing a link to your entry in the comments section.

The topic for this month’s first ever blog carnival was adapted from the “Fill-in-the-Blanks” #dsma chat on January 26th. To participate in this blog carnival, DOC’ers must complete this statement:

“The most awesome thing I have done in spite of diabetes is . . . . “

I’ve seen several entries, and they are as varied as the people and the responses on twitter. People have traveled the world, become health advocate superstars, had children, and are raising diabetic kids that are healthy and well-adjusted and doing all the great, cool, kid stuff that non-D kids get to do.

Outside of the blogging community, people with type 1 do stuff that seriously boggles my mind, like climbing Mt. Everest, and completing triathlons. These are amazing feats that frankly, defy the logic of diabetes as I know it, and that’s just a small sampling of some of the truly above and beyond things that the pancreatically challenged have done. If I could jot that sort of thing on my resume of life, I’d proudly do so.

I didn’t think I had anything particularly interesting to add, at least nothing that inspired me to sit and write. The last few years aside, for most of my life, I’ve just barely scraped by with my life, and that didn’t feel impressive or even blog-worthy to me. In lieu of contributing, I’ve been appreciating others’ responses to blog carnival, checking out their accomplishments, and waiting to see what the topic for March’s blog carnival would be.

Since blog carnival wasn’t on my blogging agenda, what I really wanted to write about this week, above all else, was National Eating Disorders Awareness Week. It’s an important issue to me because I want others who are struggling to know that recovery is possible, and I think it’s an important issue for the diabetes community, one that deserves a little spotlight now and again.

Naturally, I’m very invested in raising awareness about the practice of insulin omission for weight manipulation. It’s a serious problem, especially amongst women with type 1. From the article, “Identifying and Treating Eating Disorders in Women with Type 1 Diabetes” by Dr. Ann Goebel-Fabbri in Review of Endocrinology:

Polonsky, et al looked at 341 women with type 1 diabetes aged 13 to 60 years and found that 31% reported intentional insulin omission with 8.8% reporting frequent omission. Among this group, rates of insulin omission peaked in late adolescence and early adulthood with 40% of women aged 15 to 30 years reporting intentional omission. Both the fear of weight gain and general diabetes-specific distress independently predicted insulin omission in these women. More than 40% said they were afraid that lower blood glucose would cause them to gain weight and close to 45% believed that appropriate insulin use would cause weight gain, and approximately 36% believed that a target of near-normal blood glucose control would cause them to become fat.

That’s frightening, and those statistics should be alarming to all of us. That being said, eating disorders are not solely the domain of type 1 diabetics. When I did a quick search for research on binge eating disorder (BED) and type 2 diabetes, I didn’t find much other than the suggestion that BED is more prevalent amongst obese type 2 diabetics. Common sense dictates that binge eating is associated with obesity, and obesity is, of course, associated with type 2 diabetes, and BED and diabetes are both associated with depression, so it seems that there’s a lot of room for research, in addition to increased awareness, of this issue also.

As we know, food is a potentially, almost unavoidably troublesome realm for people with diabetes. Our relationship with it is complicated, and there’s a fine line between fastidious diabetes dietary management and an eating disorder. All too often, hunger seems to take a backseat to maintaining BG’s when it comes to what, when and why we eat, so it’s no wonder that many of us have found ourselves struggling to achieve some semblance of a quasi-normal relationship to food and our bodies

In recognition of National Eating Disorders Week, yesterday, I sat down to write about it, but I encountered the problem I seem to have whenever I broach this topic. Moving past the facts and figures and basic information to speak from my heart about this issue is really hard for me.

Even though I’m recovered, I’m still saddled with shame. I always worry about what others think when they learn I had an eating disorder. I bristle with discomfort at the prospect of reminding my friends and family of what was. I have a pending job application, so I’m concerned about the review committee discovering this dark secret. Of course, it’s still there to find, and one wouldn’t have to dig very deep, but it’s my delusion that as long as I keep it off the front page here, it’s less likely to be found. I’m similarly concerned that my pending school application might become a casualty of my disclosure. With all of that clouding my mind, and inhibiting my thought process, the ideas and words don’t flow. So I found myself stuck, unable to follow through with my desire to post something that would raise awareness, and be meaningful and reflective of my personal experience.

Then I had a revelation. I knew how to fill in the blank.

Just like that, my tears are streaming down my face. I remember thinking to myself, “I’ve had an eating disorder for 2 years… 5 years… 10 years… 15 years.” After 15 years, I thought, “It’s going to be 20 years. I’m never going to overcome this, and I’m going to die because if it.” Almost two decades of eating and throwing up, both resenting and coveting food, and hating my body. Oh God, how I hated my body. Not just because I forever thought I was fat, and when I didn’t think I was fat, I was terrified I would gain weight. I hated my body because it had failed me, and I saw it as my enemy. It was diseased and broken and not worth the space it consumed.

So I punished it, eating unimaginable quantities of food in a single sitting. When I wasn’t eating, I was thinking about food I would eat, food I would buy, food I would make, food, food, food. And I almost never thought about diabetes. I took whatever long-acting insulin I was using at the time, and there were some years, when I only took half of that if I even remembered to take it at all. Years I didn’t bolus unless I felt so sick I thought I might go to sleep and never wake up. Years I’d eat big bags of Skittles or M&M’s or cookies or spice drops, call that dinner, and not take a drop of insulin. I’m ashamed of all that, and it’s not even the worst of it. Today, I don’t think about all of that very often, partly because it’s in the past, but also because it overwhelms me with sadness, grief, shame, regret, and more than anything, the desire to undo it.

Sometimes though, when I’m at a restaurant, cutting my bacon cheeseburger in half and splitting my fries into two servings, a meal for now and one to take home for lunch tomorrow, I think about how different my relationship with food is now. When the waitress tries to entice me with dessert, I consider whether or not I’m actually hungry, and unless it’s a special occasion, I pass. “Gosh, that sounds really good, and I love ice cream/cheesecake/brownies/banana pudding/bread pudding/chocolate cake/apple pie/peach cobbler, but I’m full.” It’s a completely different experience, listening to my body, and respecting what it tells me about whether or not I’m hungry. Compared to when I was binging, I eat a tiny fraction of what I used to eat, but I enjoy it exponentially more now.

Diabetes doesn’t make it perfect, as you know. I do have to consume carbs when I’m low, even when I’m not the slightest bit hungry, which I absolutely loathe. I do have to snack to fuel activity and exercise if there’s too much insulin on board. I do have to conscientiously refrain from over-treating lows when I’m hungry. I will make decisions about what to eat based on my BG, especially when it’s high, even if that means foregoing what I’m craving. Like I said, it’s not perfect, but I think it’s as good as it gets, and overall, I’m happy.

The most awesome thing I’ve done in spite of diabetes is I’ve made peace with food and my body.

The only way to deal with an unfree world is to become so absolutely free that your very existence is an act of rebellion. ~ Albert Camus

Many of us pick paths in life, partially or even solely because that path leads to health insurance. Many of us choose jobs because of it. Some of us even choose careers because they are more likely to offer stability in the form of a health plan. While Jason and I wouldn’t have gotten married if we didn’t love each other, I never got a real proposal, and we postponed the traditional wedding to run off to Vegas so I could get added to his benefits. I was changing jobs and would otherwise have been without insurance.

This is not to say that people without diabetes don’t take similar actions for the sake of health insurance, but it’s my personal observation that diabetics are more likely to build their lives around getting and keeping health insurance. All of that, and one of the greatest ironies of living with diabetes in the US is that health insurance is really only for healthy people. If you have anything more than a sinus infection or a hangnail, you’re in for a rude awakening because your health insurance company doesn’t give a flying fig about chronic or serious illness. I’m pretty sure they’d be relieved if you took your arthritis or cancer or depression or diabetes, and snuggled up on the railroad tracks of your local commuter train at rush hour because keeping you around simply isn’t cost-effective.

If you’ve been reading my blog for a while, you know that I was on COBRA for 18 months. In anticipation of COBRA ending, Jason and I considered our options, and I automatically looked at the premium plan his employer offers. When I’ve had a choice of plans, I’ve always gotten the bells-and-whistles plan because I use a lot of health care, and figured I was getting my money’s worth. However, the premium plan offered by his employer was exorbitantly expensive, and we would have lost about a quarter of Jason’s salary. It wasn’t something we could swing if we intended to continue paying our mortgage and eating food. What can I say? We like to live large.

With dejected resignation I started to look at the basic plan offered by his employer. The benefits themselves were mediocre at best, but they actually weren’t that much worse than the more expensive, supposedly better plan. The biggest difference was the paycheck deduction, which wasn’t too steep compared to the deduction for the premium plan. Most concerning to me about the plan was the $1000 deductible, and the fact that it applied to durable medical equipment. So when the time came to buy pump or sensor supplies, I’d have to pay for the whole thing out-of-pocket until I met the deductible. After I met it, I’d still have to pay 20%, which isn’t horrible, but was difficult for me to digest since the plan from my previous employer had covered DME at 100%. I’d be going from paying nothing to conceivably paying an estimated $1600 a year, just for pump and CGM supplies. Ouch.

It’s the plan we went with, only because it was the only one we could afford, and I’ve always maintained that with diabetes, given the choice, even an awful plan is better than no plan at all. Thankfully, I only had one memorable issue during the first few months, stemming from a visit to the ER in Orlando after I fell and broke my hand at the ADA conference. For one problem though, it was a whopper that took months and some assistance to resolve. Jason’s employer’s benefit year is July 1st to June 30th, so last July, the mediocre benefits became worse. My level of contempt for Horizon Blue Cross Blue Shield of New Jersey and whoever it is at Jason’s company who picks these pathetically insufficient health plans has sent me to a new level of scorn.

During this benefit year, I have had more problems and aggravations than I can succinctly summarize, but in order to illustrate my point, I’ll offer some examples. One of the most absurd issues I had was Horizon’s initial refusal to pay for a visit to my primary care doctor. I would have expected them to contest paying for a specialist visit, but my primary doctor? Thankfully, this one was easy to rectify. I called, complained, and it was resolved.

There was an issue when I went to the ophthalmologist in November. I have a history of retinopathy, including multiple laser treatments, and a vitrectomy in 1998 to repair a hemorrhage in the vitreous fluid of my right eye. Getting periodic dilated eye exams is important for all diabetics, as we know, but this is especially true when one’s retinas have proven themselves to be leaky. When I go to the doctor he does a dilated exam and takes photos of my retinas in order to compare them to past photos. As far as I know, this is the best way to discern if there have been any changes in the vasculature of the retinas. I had this routine appointment, paid my $40 co-pay, and figured that was that.

Then I got the explanation of benefits that the retinal imagery procedure wasn’t covered as part of the appointment, and my deductible applied so I’d have to pay out-of-pocket. My ophthalmologist appointments have never been itemized like this. I’ve always paid the co-pay, and that covered everything that was done as part of this routine exam. I had a fit over being charged extra for the imagery procedure. After calling Horizon and arguing with someone who probably didn’t know a retina from a spleen, I ended up having to call a patient advocate agency with whom Jason’s employer contracts. She finally got it resolved for me.

In both of those instances, Horizon has errantly tried to apply my deductible, and there have been additional instances of such that I’ve either had to call and resolve with Horizon, or failing that, call the patient advocate for assistance. I suppose that someone who is less familiar with the unfortunate ins and outs of a for-profit health insurance system wouldn’t realize Horizon was screwing them, and would probably just pay the bill. I’m stubborn and Horizon consistently enrages me so I’ll call and bitch until I get these things sorted. However, because I have had so many recurring issues with them, and because I’m already frustrated with my sucky benefits, my wherewithal is wearing thin.

My most recent issue was with lab work I had done a month ago. I had a lab slip from my nephrologist, who I see every six months to make sure my kidneys are stable. Blood and urine labs are her only way of knowing if my kidneys are functioning, filtering and not deteriorating. I also had a slip from my endo for my regular check-up. It was all routine lab work that I get done prior to seeing both of these doctors, so I was taken aback by the explanation of benefits I received that Horizon wasn’t paying for the lab work, and my deductible applied.

I should interject that I still haven’t met my deductible. I’ve purposefully avoided ordering pump supplies since paying the $600-$700 bill that will result is going to be a wee problematic. I’ve been living on the stockpile I amassed when I had better health insurance, but my stockpile is dwindling. I digress though.

I called Horizon to find out why my lab work wasn’t covered, and the girl told me routine labs are covered, but diagnostic labs aren’t. Diagnostic? I was confident my endo wasn’t trying to confirm a 32-year old diagnosis of an incurable disease. I mean, seriously, duh. I could tell she was not even going to make an effort to help me, so I called LabCorp, but they couldn’t help me either, telling me they bill based on the coding provided by the doctor who orders the labs.

I called my endo. The lady there seemed sympathetic, probably because I was in tears at that point. She looked at the lab orders, and said it had been coded just as it’s always coded, a diagnosis of, surprise, diabetes. She suggested I call Horizon, and ask them how it was supposed to be coded so it would be considered routine and not diagnostic. Once I got that info, I could call back, and they would gladly help me.

I called Horizon again. The girl with whom I spoke was far nicer than the girl I had gotten 45 minutes earlier. She investigated while I was on hold, and eventually returned to explain that she couldn’t tell me how it was supposed to be coded, and that the specific labs that were ordered are considered diagnostic, even though I explained that I had been diagnosed decades ago. There wasn’t anything she could do.

Aggravated, I set it aside for a few days, but yesterday I received the bill from LabCorp so I got the patient advocate on the phone. Since I’ve enlisted her assistance with resolving multiple issues over the last 3 or 4 months, she now knows me by name, for which I apologized, and she half-heartedly reassured me, “It’s my job.” She explained that routine labs would be like a cholesterol check as part of a physical, but because I have a diagnosis, and they have to “check my levels”, it’s considered diagnostic. It kind of made sense in an ass-backwards way when she explained it, but upon further consideration, I don’t understand. When they check cholesterol as part of a “healthy” person’s physical, aren’t they trying to see if his diagnosis is high cholesterol or not? That seems more diagnostic to me than checking my A1c as part of a routine diabetes check-up.

From the bottom of my heart, and despite my bitching, I try to be thankful I have health insurance, and I’m immensely grateful Jason has a good job, aside from the egregiously shitty health insurance. I’m sure not having any health insurance would be a tremendous financial and emotional strain for us, as it is for all the individuals and families who have diabetes, but no insurance.

However, I’m worn down from being on the phone with Horizon, the advocate, and a list of providers, haggling with people who sometimes know what they’re talking about and sometimes don’t, who are sometimes helpful and sometimes not, “We can’t help you, call the provider… We can’t help you, call Horizon”, the endless hours I’ve lost being on hold, explaining, explaining and more explaining about how this bill or that bill is incorrect. I’m brimming with hate and rage for both Horizon and Jason’s employer, a healthcare company ironically enough. When I’m in a better frame of mind, I don’t wish diabetes on others, but when these health insurance issues have frayed my last nerve, I hope everyone who complicates life with diabetes by making it so difficult to get supplies and services comes down with a raging case of destroyed beta cells. I want them to really understand what it means to navigate the impossible system they’ve constructed, and continue to support and defend.

Health insurance or not, diabetes sucks an unreal amount of resources from us, and I admit I get pissed other people don’t have or even understand these expenses. I’m not just talking about money either. It’s time, energy, emotion. It’s the toll it takes on relationships, our physical health, and our mental health. For kids, it affects academics, and for adults, it affects careers, marriages, and parenting. All we want is the medication, supplies, devices and services that will best allow each of us to live lives that are hopefully long, productive and filled with enough joy to make all this aggravation, worry and heartache seem kind of worth it.

The problem is that there is this constant sense of having to justify ourselves since existing as a type 1 diabetic in the 21st century is a very costly prospect. Uneducated halfwits like Red Peacoat and Khaki Pants want us to subsist on the same medications and management recommendations that were status quo in 1980, and I have little doubt there are people who think our lives are not even worth those outdated resources, let alone ones that provide us the best opportunity to live full lives.

So all we do is fight. We fight for health care, we fight for support initiatives to assist low-income diabetics, we fight for accommodations at school and work, we fight for better technology, we fight for mental health support, we fight to be cured, we fight to raise awareness, we fight to financially sustain ourselves under the looming costs of this disease, and for many of us with health insurance, we fight to receive benefits to which we’re supposedly entitled under the provisions of our respective health plans. In the middle of all that fighting, we’re forever fighting to keep our BG’s within range so we don’t have to fight complications and early death. All of those fights boil down to a single fight, the fight to validate our existence. We tell people, please, let me have what I need so I can live a life that will hopefully be long and productive, so I don’t die too young, so I won’t be permanently disabled in any of the numerous ways that diabetes disables people. It’s perpetual bartering. If you give me this, I’ll be able to live. Then we wait to see if they think our lives are worth it.

Twinges of doubt are inevitable when there are incessant suggestions that your value as a person is less than that of someone without diabetes. Never knowing who might not think you’re worth the cost of the supplies and services you need is nothing short of demoralizing. Fighting with my insurance company is tiresome for sure, but negotiating for my life and justifying my existence is downright exhausting.

A couple of blog posts were brought to my attention yesterday that got me thinking. Really thinking.

George thought I might be interested in a post on the blog, Wife of a Diabetic, and indeed, I was. As always, I encourage you to head over and read for yourself, but the title of the blog is pretty self-descriptive. From the sub-heading: My DH went from pills to insulin shots in March 2006 and he does not deal with it at all… And I need an outlet for my feelings and my thoughts…

I read this blog for a short while not long after I started blogging. Eventually, I stopped reading because I found her viewpoints toxic, and I thought Wife and her husband needed family therapy. Reading it started to feel voyeuristic, and even more unsettling to me, I had the skeevy sense that I was somehow complicit in their obvious dysfunction even though I know their issues will continue whether or not I read.

The post that George thought I should read was not specifically about Wife though. It was an email that Wife received from a reader, a man in his early 30’s, Gregory, whose wife has diabulimia, and who expressed how grateful he was to have found the spouse of another diabetic who doesn’t follow their regimen. What Gregory didn’t seem to realize was how Wife of a Diabetic is a sinkhole of negativity just waiting to suck in other spouses feeling lost and alone. I could feel the heaviness of my heart as I read Gregory’s email, recognizing the irrational priorities his wife has adopted in pursuit of thinness, knowing that as serious as her mental illness is, there’s treatment, and knowing there was no way to reach out to a man with nothing more than a first name.

For Gregory, the spouse in need of support and resources, of which admittedly there are not a lot, but they do exist, Wife was there to make a bad situation worse. “I think it’s a side affect [sic] of the drugs. Or a side affect [sic] of highs and lows…Don’t expect her to keep a promise. I don’t think it’s possible. Don’t expect her to be honest with you. Don’t expect her to take her meds.” Her advice was to either stay and put up with it, or leave. End of story. This woman with her own train wreck of a marriage was essentially telling him to sit on the train tracks and wait so he too could have his very own mangled mass of train wreckage.

I considered leaving a comment. I wanted to tell her she was wrong, but mostly I wanted to tell Gregory that he doesn’t have to park himself on the train tracks with Wife. A little bird told me that Wife reportedly doesn’t like to publish comments that don’t feed her martyrdom though. George told me he posted a comment suggesting that Gregory visit my blog, but more than 24 hours after the fact and as of this posting, his comment has yet to pixelate, proving the little bird correct. The irony that she has a blog to complain about a husband who refuses to engage in his diabetes care, yet she refuses to accept help from others or be constructively proactive was so obvious it hurt.

As I was digesting this, Kerri tweeted a link to Carey Potash’s post on Dlife’s Blogabetes about the death of Casey Johnson. You might be like me, asking, who the heck is Casey Johnson? Apparently, Casey Johnson is the daughter of New York Jets owner, Woody Johnson. If you aren’t a Jets fan, which is likely the case, you might be more familiar with the Johnson family from their endeavors in health and beauty products since this is the Johnson family of Johnson & Johnson, makers of such products as baby powder, Q-Tips, and One Touch test strips.

Ms. Johnson was only 30 years old, but she lived life on the edge, to put it nicely. Drugs, booze (there’s a theme going this week, eh?), and a nagging case of T1 diabetes dating back 12 years or so into which she reportedly never put a lot of effort. As Carey suggests, the irony is that Ms. Johnson’s dad is chairman of JDRF, and her name is plastered on widely-used diabetes management products. Not to mention that she was a gabazillionaire, and as we know, the richer you are, the better your health care services are – assuming you seek out those services, that is.

I contemplated these young women, Ms. Johnson who’s dead, and Gregory’s wife, barreling towards death at a pretty good clip. Two women with type 1, neither taking very good care of herself, one with what appears to be an eating disorder, and per Gregory’s account, has been diagnosed as such, and another with substance abuse problems, which much like an eating disorder, tend to be symptoms of other unresolved psychosocial problems. The bitter tone of Wife’s response to Gregory’s email, asserting his wife would never change, once a liar, always a liar, and he would just need to accept it or leave. The reports that Ms. Johnson essentially killed herself by not managing her diabetes.

I could almost hear the accusations that they did it to themselves. But did they? I’ve been down that road, so perhaps I’m biased, but I like to think I also have a shred of insight into how and why a diabetic travels that road at all. I think it’s shortsighted to lay the blame solely at the feet of anyone who’s lost their way with diabetes management. As a former non-compliant diabetic, I don’t mean to suggest that I didn’t have a hand in the self-destruction. It’s called self-destruction for a reason after all. However, it’s important to remember that diabetes mismanagement doesn’t happen in a vacuum. There are outside forces that can and do have an effect on disease outcome. Maybe the responsibility needs to be shared.

Yesterday, wondering what other diabetics thought, I posed the question on Facebook, asking anyone who might want to offer an opinion, who was responsible when a diabetic doesn’t do as they’re told. Scott Strumello, shared his insight:

There is no such thing as a “good” or “bad” diabetic — just as we all know the idea of glycemic control (implying that the patient has control over every situation) is also a lofty theory that too often fails in clinical practice. If anyTHING is to blame, it is not the diabetes, but the overly complex treatment protocol. To succeed with intensive therapy, a patient with type 1 diabetes must take 3+ daily injections of insulin (or pump therapy), 4+ daily blood glucose tests, and follow dietary and activity instructions, all of which is subject to change without notice and without warning at any point in time. The principle underlying intensive insulin therapy is grounded in the assumption that it is reasonable to expect a person to perform these acts every day for the rest of his or her life — therefore, it is the treatment protocol, not the patient nor the disease that is to blame!

I agree that the treatment protocol is ridiculous and labor-intensive. Pretending to be a pancreas day in and day out isn’t as fun as it sounds. If doing this crap every day until I die isn’t a complete time/energy/emotion succubus, I don’t know what is. People without diabetes only have the hardship of imagining living like this for a few seconds before they have the luxury of conveniently dismissing it as not as bad as we say it is without ever really having to do it.

We all know the rest of the world doesn’t “get” what it’s like to live with diabetes. Many think it’s the disease of fat people who eat too many donuts, and we just need to get off our collective asses and go for a walk, so we’ll all be cured. Forward your thank you notes to just about any mass media outlet for that prevalent misconception. If people are paying attention, they might notice the pump tubing and realize it isn’t a phone, or worse, a beeper, the surreptitious fingersticks, the dazed expression of a low BG. They aren’t privy to the perpetual mental purgatory where you are forever destined to obsess about how much insulin you took, how much you should take, what you should or shouldn’t eat and how many carbs might be hiding in it, and how this, that or the other thing is going to affect your blood sugar. All the bleeping time. Arguing. Cooking. Conversing. Dancing. Decorating the Christmas tree. Doing laundry. Driving. Funerals. Gardening. Graduations. Grocery shopping. House hunting. Job interviews. Masturbation. Meetings at work. Mini-golf. Movies. Participating in sports. Parties. Playing games. Reading. Sex. Shoveling snow. Showering. Signing up for a checking account. Sleeping. Standing in line at airport security. Taking exams. Trying on clothes at the mall. Vacationing. Walking the dog. Watching TV. Weddings. It interrupts everything.

And that’s not supposed to get tiring? We’re supposed to be OK with it and just suck it up without complaining, being pissed, or wanting to quit? When we aren’t OK with it, and we get tired, angry, depressed, and unmotivated, we’re seen as weak, lazy, undedicated, irresponsible, and of poor character? That’s justified, how exactly?

Since this is the treatment protocol with which we’re stuck though, how about a little more support from those people who call themselves our diabetes care teams? To a large extent, the label is a misnomer since we’re the ones burdened with all the work, but that shouldn’t absolve them of their responsibility to better support us. Where is the general consensus by the medical community that they’re screwing up by not providing the resources we need to properly manage this time, labor and emotion-intensive disease? Could there possibly be any correlation between their lack of ownership for the countless diabetics out there who have just given up the fight, and the emails I get almost weekly from people who want mental health help, but don’t know how or where to find it because it probably doesn’t exist in their community? The medical community just wipes their hands, pretending they’ve given us what we need, but I see marginal evidence that they even understand what we need since there aren’t adequate mental health services for most of us. Then they say we’re the ones who need to shape up or ship out if we can’t get with their program?

I can’t say whether or not something could have been different for Ms. Johnson. For all I know, people did try to help her. I’m pretty confident she probably didn’t get the post-diagnosis psychoeducation every last one of us should be getting about the behavioral health aspects of diabetes because I don’t think that sort of preventive protocol exists. The very notion that diabetics and their families be taught about the risks of depression, anxiety, food and body issues, substance abuse, family conflict and burnout before they happen is absurd, right? I guess it takes a girl with a psychiatric rap sheet that drags the floor to think up such ridiculous concepts.

As for Gregory’s wife, her symptoms sound pretty severe in that she doesn’t seem to have a lot of insight into the nature of her problem, at least based on Gregory’s description, but that’s a common feature in patients with eating disorders before they engage in treatment. It takes time and a good treatment team of both eating disorder and diabetes care professionals, but there’s nothing to indicate she is beyond recovery. Contrary to Wife of a Diabetic’s assertions that Gregory should just accept his wife’s mental illness, there is hope. I ask that you send a prayer, positive energy, or hopeful wish that he finds his way out from under the shadow of doom cast by Wife, and into the light of the rest of the DOC who will gladly welcome him and assist him in finding the resources he and his wife need so she can experience the joys of recovery that I’ve found. The Blame Game seems to be a fixture in life with diabetes, but if anyone is pointing fingers at me, I can only hope it’s because they recognize that I’m trying to change the rules of the game so people with diabetes end up winning.