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.

Tuesday night, after Jason asked me what I felt like watching, and I told him I didn’t care, he opted to put on the most recent Rambo movie that TiVo had captured for him to watch at his leisure. For future reference, “I don’t care” will not be my response next time. While I was barely watching, I managed to catch heads rolling, blood pouring, and dead bodies hanging, but even with my eyes purposely averted, just the screams of horror, and the swish-swish of long scary knives decapitating and otherwise killing people had me squirming and hoping I wouldn’t be the star in my own Southeast Asian guerilla warfare nightmare later that night.

Coincidentally, a little later, AMC was showing the original Rambo movie, First Blood, which I had never seen. I only half watched, mostly to comment on the bad acting and absurd plot premise. It was not anywhere near as gruesome as its more recent version, so at least I was spared additional cinematic gore. We were not however spared the agony of a crazy amount of commercial breaks. Sometimes we’ll watch a movie on AMC, and it’s hard to overlook that they have more commercial breaks than you can imagine, but Tuesday night, it seemed worse than ever. I didn’t actually time it, but I’d be surprised if more than 10 minutes of the movie played at any given time before there was a commercial interruption. What made it even more annoying was that it was the same commercials over and over again, one of which was for Nutrisystem D.

I’ve already grown weary of weight loss program commercials appealing to those who resolve to lose weight once and for all in 2010, but if I have to see this Nutisystem D commercial one more time, I’ll scream. Initially, the commercial didn’t register with me, even though the onslaught of commercial breaks are also twice as loud as the movie (I kid you not, watch AMC and see for yourself), but by the 4th or 5th time it aired, I started to take notice. A diet plan for people with T2 diabetes that will supposedly help them lose weight and lower their A1c?

I looked on the website. From the Nutrisystem homepage: “Lose weight & help manage the ABCs of diabetes – A1C/Blood Sugar levels, Blood Pressure, and Cholesterol.” I clicked to get more details, and on the next page, the claims were as follows:

• Lost up to 16x more weight
• Lowered blood sugar levels 5x more
• Lowered A1C by 0.9%
• Lowered total cholesterol level by 20.9 mg
• Lowered triglycerides level by 42.7 mg

I imagine anyone with T2 who is overweight and loses a significant amount of weight would have comparable results. The obvious hurdle is, of course, losing the weight, but Nutrisystem purports to facilitate overcoming that obstacle.

Then I went digging for a little more information in the form of reviews and opinions. First I found the Diet Blog, a site to which I’ve never been before so I can’t speak to its credibility. My anti-diet philosophy aside, it seemed OK overall though. They seemed to make some valid points worth noting. The Nutisystem D diet is based on a study at Temple University (my alma mater, it should be noted) School of Medicine. The sample size was small with only 68 obese participants, so no definitive conclusions should really be drawn, let alone an entire diet program developed based on them. Furthermore, and even more troubling, “The lead figure on the study, Dr Gary Foster, wrote the NutriSystem Diet’s ‘Mindset Makeover’ behavioral guide. Also, NutriSystem provided an ‘educational grant’ for the Obesity Management In Patients With Type 2 Diabetes dinner meeting at Temple University’s School of Medicine.” Can we say, “conflict of interest”, boys and girls?

My next stop was our very own Diabetes Daily where Elizabeth Edelman did an impressive and comprehensive review which you should totally check out to get more details and insight into this diet. One thing she noted was the obscene amount of sodium in the packaged meals. Sodium is bad for diabetics, and while it’s especially dangerous and needs to be watched by those of us with blood pressure, heart and/or kidney-related problems, if you want to take steps towards avoiding those health issues, you’d likely be doing yourself a favor to keep an eye on your sodium intake. What struck me was the first quote I lifted from the Nutrisystem homepage that the diet would help with the ABC’s of diabetes including blood pressure – yet the food is loaded with sodium? I guess what they strategically omitted was that their packaged meals are more likely to raise your blood pressure, not lower it.

Elizabeth also noted that the diet doesn’t teach participants how to eat once their supply of packaged meals is depleted. This is the problem with just about every diet that exists though, and that brings me to the true take-away message I want to impart.

I don’t believe in weight loss diets, so my bias in that respect should be noted. I believe in eating a wide range of foods, heavy on whole grains, produce and low-fat protein, light on processed foods, all in moderation – well, except for diet soda (it’s my vice, so sue me). It’s vague I guess, but after spending half my life in a tete-a-tete with food, I made peace with food and this works beautifully for me. I’m sure there are a few sporadic souls out there somewhere for whom a weight loss diet has worked to the point that they were able to reach their goal weight and maintain their weight loss, but for the vast majority of people, that isn’t what happens. So what good are weight loss diets? Well, they might help you lose weight for a time, but they are by their very nature nearly impossible to maintain forever so the weight inevitably returns. Weight loss diets make the people who write the books about them, and the people who run the weight loss program companies fat… in the pocketbook sense, of course. It’s a billion dollar industry because people keep feeding it, pun intended.

I know, I know, if you’ve met me or seen enough photos of me, you’re asking who the heck am I to talk about weight loss diets? I’m not fat. I’ve never been fat. I was slightly overweight when I was 14 after eating myself into oblivion one summer to alleviate what I now recognize as depression. My obsession to lose those 20 or so pounds resulted in an 18-year eating disorder, diabetes complications, and all the accompanied fallout. So my food and body issues aren’t the same as someone who’s obese, but if I hadn’t hobbled along with my compensatory behaviors – insulin omission and self-induced vomiting – for the better part of two decades, I can assure you, I’d be as big as a house with an attached 3 car garage and an in-law suite. I’ve despised my body. I’ve been engaged in obsessive power struggles with myself about whether or not to eat something. I’ve felt deprived. I’ve felt completely out of control with my eating. My end result was different from someone who’s overweight, but I think my struggle was comparably miserable, and achieving balance and making peace with food and my body, no less monumental.

My weight is now healthy and stable. Thus, I have no reason to consider weight loss as a New Year’s resolution. There are plenty of things I should consider – exercising and cleaning my house would be good starts – but in the end, I don’t do New Year’s resolutions. The very concept of getting motivated to do something that’s likely been an ongoing problem for an extended amount of time, in January of all the cold, dark, depressing months of the year, just because you have to get used to writing a new number on your checks seems inately ludicrous to me.

Yesterday I saw this post, “New Year’s resolutions – no more!”, written by Doris Smeltzer on Eating Disorders Blogs: Advice for Parents, and tweeted by @gurzebooks, a publisher of books about eating disorders. I encourage you to read the post, but in brief, Ms. Smeltzer spent years making resolutions to lose weight. The time came when she found the key to achieving the number on the scale she had so longed to see – chemo to treat breast cancer. She swore off diets after that, but whatever messages had been conveyed to her daughters about loving – or in this case, hating – one’s body were learned. One of her daughters eventually died from an eating disorder. I’m sure that isn’t the sole reason her daughter developed an eating disorder because an eating disorder is a very complex mental illness. However, I suspect, just as Ms. Smeltzer does, that her daughter garnered some very negative messages about her body by watching what many would say is typical behavior – a New Year’s resolution to lose weight. You want to lose a few pounds, maybe you ate too many Christmas cookies, maybe you haven’t lost the baby weight, maybe your genes just don’t agree with you being a size 6 or wearing a size 34 waist, so New Years rolls around, and you decide you’re finally going to lose those pesky pounds by going on a diet.

Ms. Smeltzer, who no longer diets and whose daughter is dead, quoted the spring 1991 issue of Radiance Magazine:

In 1990 Congress investigated hazards and misrepresentations of the diet industry. C. Wayne Calloway, M.D. practices endocrinology in Washington, DC and has held prominent positions with the Mayo Clinic, university medical centers, the U.S. Department of Health and Human Services and the National Institutes of Health. He testified, “The great mythology is that the diet works and that you have failed. Most likely, the act of dieting itself leads to the compulsion to eat. Bingeing is a normal consequence of starving.” (p. 15)

So should you just say screw it? Well, no, not if it’s in the interest of your health to lose weight. I don’t claim to have the secrets to weight loss, and I do think that achieving weight loss is a very individual thing – much like diabetes management. I’ve never had to lose a lot of weight and then maintain it, but if you think I don’t know about learning how to eat like a normal person so that I could maintain weight without slowly – or quickly – killing myself, then hello, I’m Lee Ann, nice to meet you, so glad you popped by today.

Luckily, as people with diabetes, it’s generally easy for us to justify meeting with a registered dietitian, and that’s what I think anyone who wants to change their eating habits should do. The people at Nutrisystem or Jenny Craig are sales people before all else, and they want to sell you the dream that you can be whatever your magic scale number is. I know some people swear by Weight Watcher’s, but if you have to keep going back and paying over and over again, I can’t help but think that they just want to make a profit off you and your desire to lose weight too. Your diabetes team, your healthcare providers are the ones who are better situated and better qualified to help you devise a plan to lose any weight that might be compromising your health. Sales people are not.

So this year, instead of deciding you need to lose 20 pounds, and then beating your poor psyche to a pulp in 6 weeks when you haven’t made whatever progress you envisioned on a diet that you know you can’t indefinitely sustain, decide you’re going to get a kitchen scale and start weighing your portions. Make a new rule that you aren’t going to eat straight from the box, bag or container. Trade your half-gallon of ice cream for single serve bars or cups. Are you going to lose that 20 pounds by doing any one of those things by itself? No, but any one of those things are good steps to take towards learning to eat a healthy, varied diet of the foods you actually like in moderation. Then, if you must make one, spend your New Year’s resolution on something fulfilling, like remembering all the things that make you awesome, no matter what the number on the tag in your pants is.

Yesterday afternoon, after having dozed on the sofa, I had the sudden realization that it was my 4th anniversary for being eating disorder-free. It’s kind of an odd day to acknowledge I guess. Not a sad occasion, but I’m not sure that I’d call it a happy one either since it’s one I wish I had no reason to have in the first place. Similar to a D-anniversary, for me it’s a cause to reflect on where I’ve been, where I might be headed, and how to steer clear of pitfalls that might appear in my path. It reminds me of things I’d rather not consider, but it also reminds me that my life has changed for the better.

I considered whether or not I wanted to post about it. To write about something or not, it’s a question I ask myself many days. Often it’s because I can’t decide if I can make some run-of-the-mill diabetes issue or occurrence sound entertaining or thought-provoking. Sometimes the topic in question is one I’ve written about before, so it’s a matter of figuring out if I have anything new to say about it, which has a certain irony since diabetes itself is as repetitive, routine and rote as it gets. How many times does anyone want to read about me being high or being low or running out of test strips or…. well, you get the idea. There are occasions when I wrestle with whether or not writing something will offend someone or someones. Regarding some topics, I’m opinionated as all get out, but I’m not looking to make people mad or offend anyone or make an enemy where there wouldn’t have been one otherwise. Then there are times when I hesitate to write about something particular to someone else because I don’t like to assume everyone else wants to be the subject of my musings and ponderings.

Milestone

Certainly, I give some thought to whether or not I want to post things of a more personal nature. What happens if that hiring manager with my resume on their desk googles my name? Will they see someone worth hiring, or will they see a formerly really crazy person who’s still got a good deal of crazy going on, and can’t guarantee the super crazy won’t reemerge? When I do start spilling more personal stuff, I either cross my fingers having all this here on the WWW won’t come back and bite me in the behind, or I just pretend that possibility doesn’t exist. At the end of those days when I’ve tiptoed into TMI territory, I hope that someone somewhere got something from reading whatever I might have shared, and if there is a price to be paid in the form of a lost opportunity or criticism or doubts about me, well, so be it as long as one good thing came of it.

So the lingering question once I realized the significance of the day was whether or not I wanted to say anything about it here. There was a time before I blogged when talking about it was terrifying. Then it became strangely liberating, which actually isn’t so strange if one considers that I wore myself thin, no pun intended, to keep it a secret for the 18 years it was a perpetual black cloud over my head. Days of recovery became weeks became months which have now become years though, and there’s a part of me that wants to sweep it under the rug. It’s as much a part of my current existence as I want to make it, and I think it’s no surprise that there’s a strong inclination to leave it in the past since it’s hardly something to be proud of.

In the midst of deliberating if I had anything worth saying about it, it was way past most normal people’s dinnertime, and we had yet to eat, so I decided we should go out for dinner. We didn’t go anywhere fancy, just someplace we often go to grab a quick dinner. The hostess seated us, we discussed our menu options, and waited for the server to take our order. Ironically enough, our waitress was a girl with whom I was in treatment 4 years ago. A couple of years ago, Jason and I went to grab lunch after a movie, and I heard someone say my name. She was there in her uniform, greeting me with a big smile. She asked how I was, but it seemed to me that the unspoken question was how is your recovery going. I told her I was great, that things were going really well. I then asked her the same, and her eyes gazed through the floor to the left of her, as she unenthusiastically and reluctantly said she was OK. It’s worth mentioning that I hadn’t even recognized her at first because she was significantly skinnier than when she had been in treatment. She gave me a hug before she scurried back to work. Before we left, I scribbled my phone number on a scrap of paper from my purse, and gave it to her, telling her to call me if she needed to talk. I never heard from her.

Since then, I’ve seen her there many times, but we’ve never interacted, nor has she been our server. Until last night. I was fiddling with my phone when I recognized her voice, so I looked up. I was wearing my Eagles baseball cap so maybe she hadn’t realized it was me with my nose in my phone. We made eye contact, but she didn’t say anything to me though, and I didn’t say anything to her. It’s standard operating procedure to not “out” people with whom one has been in group mental health treatment, which is especially true if said person is at their place of employment. Although she had seemed happy to see me that day two years ago, I couldn’t assume she felt the same way last night. So it was weird trying to pretend like I didn’t know her, taking her lead. It made me sad because she’s still very thin, and my gut says she’s still struggling. Maybe I’m wrong, but I hate thinking that I might be right.

In that nonfrontation (you know, like confrontation, but not), I found my answer to whether or not to post. I obviously can’t help anyone who doesn’t say anything, ask or come looking for help, but if I put it out there that there is help, that it is possible to overcome an eating disorder, that life is so much better once it’s a thing of the past, then maybe someone will come searching and find the blog or this post or another post I’ve written on the subject.

I hope it helps someone who’s considered taking a so-called short-cut to weight management see that the cost of an eating disorder isn’t worth whatever benefits are perceived. I hope someone who’s suffering with their own eating disorder can see a glimmer of hope that recovery is possible, as impossible as it might feel. I hope a parent is reminded to have an honest discussion with their diabetic kid about body image and dangerous weight management practices. I hope a parent is reminded to not be so quick to completely hand over the reins of diabetes care just because their kid seems mature enough because once you hand those reins over, good luck reclaiming them if your kid starts to flounder. Remember, the day will come when all that responsibility will fall squarely in their lap, like it or not, so there’s some benefit to all involved if a parent maintains at least some degree of active participation.

It’s hard to live with myself knowing all I did to not take care of myself and how that took a toll on all aspects of my life. I do think things happen for a reason though, and so I keep hanging on to the hope that someone else will learn or get inspired or otherwise benefit from my screw-ups. And that’s why I decided to post.

As I told you I planned to do, on Tuesday, I headed up to New York City to speak at the young women’s type 1 support group about diabulimia, and diabetes-related food and body issues. I had intended to get up there early because Karen and I were going to meet for lunch, but we got our wires crossed… well, more accurately, her email imploded, but the end result was no lunch with Karen. On the plus side, she promised me that next time I’m in NYC, barring any burning schedule conflicts, she’ll be there to hang with me, so I’m looking forward to that.

It probably worked out for the best though. The night before, I stayed up too late, as I’m inclined to do, and just as I was thinking that I should have gone to bed three hours earlier, my BG started hovering too low. I had some juice. I had some milk. I went upstairs, and the low didn’t feel like it was lifting. I started envisioning myself waking on sopping-wet sheets to Jason, frazzled and fried from trying to lure me out of Lalaland with the ever enticing glucagon injection. I drank a juice box, and topped that off with some glucose tabs, feeling pretty sure I was probably over-treating, but feeling scared shitless I wasn’t.

Five hours and change later, I was up, knowing I needed to get showered and be on my way, but feeling like crap. My BG was high, somewhere between 250-300mg/dL. Too little sleep and too much compensatory sugar made me want to call Katie and tell her I’d be up to share my experience with the support group another time. I got out of bed though, took some insulin, and made some efforts to get myself together. I didn’t actually get out the door until lunch time so lunch with Karen was clearly not in the cards. By the time I got to the train station up in Central Jersey, I was feeling more like myself though, and working with a revised time frame, made some last minute plans to grab coffee with Allison.

Once in New York, I met Allison for an icy beverage and baked goods at Starbucks. She told me about her trip to Oregon and her birthday, and we chatted about various DOC things before she had to get back to work, and I needed to catch the subway to Union Square to meet with Katie. Katie and I also hit Starbucks to catch up on what she’s been up to (which I’m saving for another post) before we headed over to Friedman Diabetes Institute for the support group.

I think the group went pretty well. Public speaking and presenting are a bit of a challenge for me, but it was an intimate group with eight other women there besides me and Katie, so it was a nice, interactive discussion rather than me just lecturing. The group was mixed in that there were women who were familiar with the practice of insulin omission to varying extents, and there was even a woman who wasn’t familiar with it. There were women I’d never met, women I’d met a few times previously having been involved with the group on a couple of past occasions, and even a woman I count as one of my original online diabetes friends.

I told them about my history of depression, diabulimia, bulimia, in-patient treatment, day program treatment, years of regular out-patient therapy, how it started when I was a teenager, how I turned the corner toward recovery. Regarding my recovery, I emphasized the role of understanding my relationship to diabetes, moving from complete denial to total acceptance, and even coming to recognize how diabetes has made my life better. I touched a little on the evolution of my attitude about insulin, from being afraid to take it to making peace with it. We discussed the issues of understanding and normally responding to hunger when you live with a disease that often requires you eat when you’re not hungry and generally interferes with what should be a natural process. We also talked about the problems of finding mental health services that really address the needs of diabetics – the lack of resources available to people when preventative services should be implemented, all the way to the lack of services for people who are drowning in diabetes-related mental health problems, and can’t find a therapist or treatment program that shows a lick of knowledge about how mental health and diabetes are related.

I’m sure I’m leaving out some of the key points that arose. When it comes right down to it, there’s a lot to talk about when it comes to addressing how diabetes affects our relationships to food and our bodies – whether it’s something obviously pathological like a diagnosable eating disorder or something less malevolent, but still problematic, like fighting the urge to binge during a low BG. I can say that I talk about my experience because I hope it will help others feel more comfortable talking about theirs. I know I sound like a broken record, but the medical community isn’t moving fast enough to help the diabetes community deal with mental health issues in all their shapes and varieties, so we have to be the ones to open our mouths or that will never change, and many amongst us will continue to needlessly suffer.

A big thanks to Katie for creating the opportunity to even have a discussion about these issues with the type 1 women of NYC, and also for inviting me to be part of that discussion. I’m also really grateful to the women who were there for attending, listening, and engaging in a discussion about issues that can be difficult to explore, but about which we need to have dialogue if we’re ever going to find ways to help each other and advocate for the services we need and deserve.

Next Tuesday, I’ll be at the support group for T1 women in NYC. This is the same group for which I facilitated an art therapy group last spring (which was just phenomenal!). The topic next Tuesday will be diabulimia, which will likely include related issues about the complex relationship we T1’s often have with food, as well as body image concerns. According to Dr. Ann Goebel-Fabbri of Joslin, 30% of T1 women have manipulated their insulin because of concerns about their weight and body image. It’s all a tangled web, and opportunities to discuss it with people who understand are infrequent.

If you’re a woman with T1 diabetes, you’ll be in the NYC area next Tuesday, and you have a history of issues with insulin-omission, or you’re currently having issues with it, please plan on coming. Even if it’s just a topic of interest to you, or you want to give support to other T1 women, I hope you’ll consider attending. It doesn’t matter if you’ve never been to the group before, and if you come, you aren’t obligated to talk if you aren’t comfortable doing so. I’ll be there, and I hope you will too.

The group is held this coming Tuesday, starting at 6:00 and running until 7:30, at Friedman Diabetes Institute at Beth Israel Medical Center, located at 317 E. 17th Street, between 1st and 2nd Avenues on the 8th floor.

Please contact Katie at katie@act1diabetes.org if you have any questions or concerns about the group. You can also visit ACT1 Diabetes for more info.