Long time, no blog! Last week I returned from a rather eventful trip to Orlando, FL where I attended the ADA Scientific Sessions, the Roche Social Media Summit, and the Children with Diabetes Friends for Life Conference. It was a whirlwind trip during which I met some fabulous people, and caught up with many people who, dare I say it, are feeling like longtime friends now. I have so much to tell you about all of it that I’ve been a little baffled about how or where to start, but the most logical starting point is no further than arm’s length.

This pink cast, which as Karen suggested, is begging to be bedazzled, is making everything you can imagine, including typing, slow and tedious. As much as I want to unload a torrent of anecdotes and information that has been taking up vital cranial real estate, it looks like the posts might be slower to emerge than I would like. However, in an effort to put a positive spin on the blog break I’ve been taking, which it seems was much needed, slow posts will actually be a vast improvement over no posts at all.

Not So Gripping...

If you’ve already heard the story about my hand, then feel free to move ahead to the next blog in your Google Reader queue, but for those who haven’t heard how I injured my hand, the short version is that I tripped and fell. Amongst anyone who has spent enough time with me, it is a well-established fact that I am notoriously clumsy. Last weekend, we went to our friends’ to help their youngest spittle out 3 birthday candles. Upon seeing my cast and learning that it was the end result of tripping and falling, the birthday boy’s dad chuckled, and said something to the effect of, “That’s not too surprising.” So my two left feet are why I’m now fending for myself with one left hand. P.S. I’m right-handed.

The long version of the story is more than just another-day-in-the-life-of-Lee-Ann clumsiness though. While at the ADA conference, I stumbled upon the booth of the Center for Hope of the Sierras, an eating disorder treatment facility in Nevada with a program designed just for people with diabetes. It is, to my knowledge anyway, one of only two such in-patient programs in the country, which is a sad state of affairs for all the people in need of specialized treatment. I had sent the Center for Hope a resume some time back, but as is the case with many art therapist positions, they would have only been able to use me for a few short hours a week at best, and who can realistically justify moving cross-country for a job that doesn’t amount to one day a week, as cool as that job might be? I have been in occasional contact with Rachel Harriman, the Professional Relations Coordinator of the facility though, and since she travels quite a bit, we had made non-specific plans to meet up if at some point her travels coincided with my whereabouts.

Our paths never quite crossed though until I discovered she was in Orlando wo-manning the Center’s booth in the ADA conference exhibit hall. This was an especially great surprise after fielding the blatant disinterest of countless pharmaceutical and bio-tech reps that either didn’t know or didn’t care that I could read their disappointment in learning I wasn’t a physician like I can read a nutrition label. However, the Center for Hope reps were happy to chat with me about how the program is going a year and change into its inception, and how interest in the program has been slowly but steadily increasing.

Rachel suggested we meet up for dinner or lunch, so on the last full day of the conference, I stopped by to see if she wanted to grab a bite to eat. Having spent too much time in the frigid convention center, we decided we’d get out of the caverous convention center for a bit, which meant relief for my frost-covered extremities. We made the trek to the other end of the facility towards the parking lot, and stepped into the much welcomed heat.

Now, decades of diabetes has resulted in what I’ve understood to be a common eye issue for veterans of type 1. My eyes are slow to adjust to drastic changes in lighting conditions. When I transition from a bright environment to a dark one, it’s initially so dark that I can’t distinguish objects and my depth perception is shot. For instance, while some people are fine arriving at a movie during the previews, as long as they don’t miss the start of the feature presentation, Jason and I try to arrive in advance of the lights being dimmed because otherwise, I can’t see anything. I stumble on steps or down ramps or over seats or over people, and if I’m carrying popcorn or a drink from the concession stand, there’s a good likelihood that I’ll spill on something or someone. When you’ve been extorted for $10 of popcorn and diet soda, it’s aggravating to see half of it falling between seat cushions onto the icky floor.

Darn Curbs

Conversely, when we leave the theater and step into the daylight, which is how it unfolds more often than not because matinees are our movie time bracket of choice – less money, fewer people – I am blinded by the daylight. As if through a special effects filter, everything glows bright white, so I can’t distinguish things, my depth perception is shot, and again, I am more likely to stumble and trip. It is what it is and it’s been like this for coming on 15 years or so.

In both scenarios, light to dark, or dark to light, give me a couple of minutes and my eyes adjust, but it’s those first few minutes that converge with my clumsiness to make me an accident waiting to happen. Just as the solution to the dark theater is arriving prior to the lights dimming, the easy solution to stepping outside into daylight is a pair of sunglasses. It’s simple and effective… as long as I have them on my person and wear them when it counts.

The movie theater is an easy example, but anytime I go from a dim setting to a bright one, the same principle applies, be it the mall, a restaurant, or in the case of the day in question, a convention center. Once out from under the overhang at the parking lot entrance, the sunlight radiated. I started to reach in my bag for my sunglasses, but remembered they were buried under a bunch of stuff in my tote bag that made them less than easily accessible. It seemed that by the time I fished them out, we’d probably be at her car, so I took my hand out of my bag, deciding the short walk to the car wasn’t worth the time it would take to find my sunglasses.

Moments later, I walked right into a curb that I didn’t see because the sun was blinding me. I fell forward, my knees landed in the soft grass, completely unscathed, and my hand automatically went out to keep my face from meeting the sidewalk. Falling like that is embarrassing, falling like that with someone you’ve essentially just met is that much more embarrassing. The moment I recovered from being momentarily stunned, and it registered that I was sprawled on the ground after tripping on a curb I likely would have noticed had I been wearing sunglasses, I jumped up, dusted myself off, slipped my beloved bracelet, now broken, in my pocket, and assured her I was OK. We kept walking and chatting as I surreptitiously inspected my hand. Some minor scrapes, so nothing overly concerning upon visual inspection, but man, oh, man, it hurt something fierce.

Me, Cherise & Kelly R.

Since it didn’t appear to be too badly injured, and since I could still mostly move it, I decided I just needed to rub some dirt on it and walk it off, so to speak. We had a lovely lunch, discussing various aspects of the program, how it came to be, how they’d like to see it develop, and some potential collaborative ideas which I’ll happily share if they come to fruition in the future. Then we headed back to the convention center and bid farewell so she could get her colleague and supervisor to the airport in time for their flight back to Nevada.

I went about my conference agenda, and then met up with Kelly Rawlings of Diabetes Living Magazine and Karmel Allison of A Sweet Life to head over to the site of the Roche Summit for dinner with the early arrivals. My hand didn’t hurt any less, and was starting to swell and turn colors, but I stubbornly clung to my rub-some-dirt-on-it-and-walk-it-off intervention of choice, knowing that the alternative, a visit to an Orlando emergency room to pay a co-pay that I didn’t want to shell out on top of an already pricey trip, to be x-rayed and prescribed some kind of orthotic, be it a brace or a cast or a sling, sounded far worse than the pain I was experiencing.

I talked to Jason, who started to get a little cranky when he heard my flimsy reasoning for not seeking medical treatment, and I consulted with my DOC buddies who generously shared their opinions. After Kelly Kunik insisted I get it checked out, after Cherise graciously offered to go with me, after Sarah graciously offered to join us, and after Jason went from cranky to angry because I was “being stubborn and stupid”, I reluctantly accepted my fate, and relented. Kelly Kunik tracked down the address and phone number of the nearest ER, and I said my goodbyes with Karmel and Kelly Rawlings, before Cherise, Sarah and I set out on a most memorable adventure.

I know this story is as powerfully gripping as my current weak right-handed grip, but to hear the conclusion, which does include some impromptu video, you’ll have to stay tuned. Not sure if I’ll put it all together in time to post tomorrow, but if not, check back early next week…

As many of you are well aware, there are a few issues that are near and dear to my heart, and of those, eating disorder awareness hovers close to the top of my list, especially as this serious condition relates to people with diabetes. I know it’s not a global area of concern to the diabetes community, no more than it’s a global area of concern in the eating disorder treatment and advocacy community, but I think we should all be concerned that an estimated third of girls and women with type 1 diabetes have manipulated their insulin, a practice that has been shown to lead to increased risks of developing retinopathy and neuropathy.

There was a tsunami of media attention when insulin omission or diabulimia became the health topic du jour a few years ago, but the tidal wave has gradually become but a trickle, and now it’s little more than yesterday’s news. If it doesn’t affect you on a personal level in some way or another, it might not feel like there’s any more to say, write, or read about it, but it’s a serious problem that deserves ongoing attention because, media attention or not, it persists among diabetes patients. While the TV cameras and journalists have moved on to other subject matter, people with diabetes continue to manipulate their insulin to control their weight, and exhibit unhealthy behaviors related to food, body-image and diabetes self-management, behaviors that range from mildly concerning to downright pathological and potentially lethal.

Just as many of us would go out of our way to help another diabetic (or caregiver) who might be in need of supplies, advice on diabetes gizmos and gadgets, or any of the countless ways that we help and are helped by the DOC, once someone becomes entrenched in the behaviors and belief system that both characterize and fuel diabulimia, we all have a role we can play in their recovery.

We can offer kind words and support if they reach out in one of the many diabetes communities to which most of us belong. We can share our own experiences with trying to find balance with a disease that by nature, seems to sabotage the most earnest of efforts to live harmoniously and intuitively with food, and can leave you with the sense that your body has a mind of its own. We can offer links to helpful websites or treatment resources. We can also support research that will eventually lead to treatment and prevention because too many of our own are suffering, and too many treatment providers have just dismissed them as non-compliant or brittle, a term that makes me roll my eyes every time, because they don’t recognize the problem for what it is or don’t know how to treat it.

While there is not a ton of research being done in this special area, Dr. Ann Goebel-Fabbri, a psychologist with Joslin Diabetes Center in Boston and professor of psychiatry at Harvard University, has been studying insulin omission amongst type 1 diabetics for years now. While there is room for improving the level of awareness, without her work, the awareness about eating disorders and diabetes wouldn’t be what it is today.

There is so much more to understand though, so towards that goal, Dr. Goebel-Fabbri will be running in this year’s Litchfield Hills Road Race, on June 13th in Litchfield, CT to raise funds for Joslin’s Women’s Behavioral Health Fund. So far, the Women’s Behavioral Fund enabled her to travel to the ADA conference in New Orleans last summer to present on the topic of diabetes and eating disorders, a problem that continues to befuddle most medical teams who almost inevitably encounter patients practicing insulin omission. The fund went towards the purchase of academic books on eating disorders to train a Joslin dietician on treatment of eating disorders. That dietitian now has a portion of her time dedicated to the Joslin eating disorders team. The funds have provided for the allotment of time for providers to discuss difficult situations and receive treatment suggestions from the eating disorders team. Additionally, it’s allowed Dr. Goebel-Fabbri to analyze more data on her 11 year follow-up study to create a manuscript that will be submitted for publication soon. This manuscript looks at women who recover from insulin restriction and women in whom the problem emerged in that 11 year period – a naturalistic follow-up to track new onset and recovery.

Dr. Goebel-Fabbri also shared some of the projects she is hoping to pursue in the future as the funding becomes available. She would like to do qualitative research on both women and men with type 1 who have recovered from insulin restriction and an eating disorder. Garnering an understanding of the factors that led to recovery would provide insight into how to tailor treatment for others battling this problem. She would also like to report on the effectiveness of new treatment strategies being used by patients to recover from eating disorders. Longer term, Dr. Goebel-Fabbri is hoping to compile the research into a book that includes real stories of recovery, a resource that is sorely needed by doctors and diabetes clinicians for whom there are few resources to help them understand and treat this serious condition.

The run is this Sunday, but please note, she will be fundraising through the summer to help build the Women’s Behavioral Health fund. Please consider contributing whatever you’re able to give. Her work will help so many individuals with diabetes struggling to overcome food and body issues, and when those people find their respective paths to recovery, the entire DOC and global diabetes community will be that much stronger and our voice will be that much louder.

On Sunday, Jason and I had a heart to heart. Mostly he listened, mostly I talked, or rambled as the case may be, and I got a little teary eyed too. I’ve been feeling overwhelmed, like I’m trying to go in a hundred different directions, but since that’s not possible, I’m really just running in circles, although even that doesn’t quite describe it because at least if I were doing that, I would be going in some direction. Too many irons in the fire. Too many pots on the stove. You get the idea.

I do think part of my problem is related to my father’s death, but I don’t think I’m far enough away from it to really have enough perspective to grasp how it’s impacted me. Yesterday, I got papers in the mail from the lawyer, something about an inventory of assets since the estate was probated. I don’t know exactly because I glanced at it, and set it down with the distinct thought that I don’t want to be bothered with any of it anymore. I’m tired, all the work I’ve put into managing his estate has ultimately been thankless, and since he wasn’t particularly interested in me during his life, there’s not even a sense that he would have been appreciative of how I’ve stuck my neck way out for him through all of this…

Needless to say, I have some strong, unresolved feelings that I need more time to process. It’s this waiting and not knowing how to go about it that gets to me.

That’s probably the only truly bad thing that’s seeped into my spring, and although I can’t say I really knew what to expect as the initial turmoil of his death passed, it’s not a surprise that I’m feeling as I do about it now. Luckily, the rest of the chaos in my life hasn’t been morbid, and some of it has actually been good, although it’s what’s had me feeling like I’ve been running around like a chicken with its head cut off, although with a better outcome I hope.

Diabetes Robot

As April came to a close, I was the guest facilitator at our local hospital’s support group for teens with type 1. I brought my big plastic container filled with art supplies along with several boxes of diabetes trash, courtesy of many of you (thanks!!), and the kids went into a frenzy of creative goodness. Many of them collaborated to create a big diabetes robot, some of them did their own thing, but overall, it was a great success.

The CDE who runs the group relayed to the diabetes education department how well the group had gone, and as a result, I was invited to speak at a workshop for school nurses about eating disorders. A local clinician who is both a dietitian and a social worker was the headliner, followed by a CDE from the hospital who spoke about diabulimia. That nurse invited me to give the patient perspective, so I talked about my experience, recovery, and what I do now.

In addition to sharing how well the teen group had gone with the colleagues in her department, the nurse who runs that group also told another CDE who works at a local pediatric hospital about the art therapy group I did. That CDE invited me to participate in a summer camp program she’s starting for lower-income urban kids with type 1. As many of us know, diabetes camp can come with a high price tag, and although all of the camps with which I’m familiar do their best to offer financial aid and scholarships, that doesn’t mean all the families with kids who would benefit from such opportunities know to apply, or are in a position to buy things their kids would need for camp, or are even able to transport their kids to camp.

This new camp will be for 4 days in August, including a Saturday family day. The CDE is still trying to nail down a location, so this is in the very early stages of planning. She said my position will be a volunteer position, as the funding is bare bones, but it’s her hope that should it be successful this summer, that she’d be able to attain enough funding next year to pay me. Right now, the tentative plan is to have 3-4 art therapy groups per day, with one 1-day project, another more involved 2-day project, and then have the art on display for family day. Needless to say, I’m super excited to be a part of this. For several years, I’ve wanted to do something like this, but wasn’t really sure how to bring my vision to fruition. Of course, as with anything, I’d love to get a fat paycheck, or any paycheck for that matter, to go with it, but since I love what I do and I’m able to volunteer my services, committing to the project was only a matter of checking my schedule to make sure I was available. And I am, so I’m in!

In addition to that, Children’s Mental health Awareness Day was a couple of weeks ago. In honor of that, the Delaware Valley Art Therapy Association joined the Please Touch Museum in Philadelphia, a museum for children, to provide a day of art-making that was titled, “My Feelings Are a Work of Art”. I’m now on the board of DVATA as the newsletter chairperson (another project that’s had me quite busy), so I volunteered to help with that. The museum liked it so much that they’ve asked us to come back next year and do it again.

Of course, if you weren’t actually there, then you’ve likely already read other posts about the big D meet-up in NYC that was a little over a week ago. In honor of Cara’s yearly trek to see more musicals in the course of a few days than I’ve seen in my life, many diabetics in NYC and the surrounding areas gathered at a bakery-restaurant on the Upper West Side, just a block or so from Central Park. If the whole menu wasn’t organic, most of it was, so it was very environmentally-friendly, chemical-free food, which is good because I’ve been trying really hard to steer my diet more in that direction – although I was sad there was no diet soda. I have to say the bakery counter was filled with some beautiful treats, and had it not been for the long line as we were departing, I would have at least gotten some cookies. Also, as a side note, I had to chuckle because the original plan had been to meet at a little restaurant that specialized in pizza and mac & cheese, and I was totally prepared to arrive with a full cartridge of insulin, but Allison, our trusty organizer, discovered that restaurant had closed, so organic, sustainable plan B was quite the 180 degree turn!

The other biggish thing that’s happening is that I’ve decided to apply to a doctorate program. I have a lot of work to do to get my application together, so that’s taken precedence over blogging. Next week, I’m taking the Miller Analogy Test, which is a standardized exam that I need for my application. Honestly, I think my chances of getting accepted are a little skimpy. My qualifications are kind of marginal, but research to show that art therapy could be valuable for helping people with diabetes needs to be done, in my humble opinion, and although I might not have the best pedigree, I’d bet there aren’t too many people who are as motivated and invested as I am in doing that research. I debated sharing this here because I loathe the day when I might have to report that I wasn’t accepted, but I’ve posted about it on Facebook, so I figured I’d share it here too. Whatever ends up happening, you will be some of the first to know.

Finally, I’ve already blurted this all over the place, but my proposal to do a workshop at the American Art Therapy Conference in Sacramento this November was accepted. Before I go, I’ll be packing up the diabetes trash to ship to the conference site so the workshop participants can get their hands dirty in the discards of diabetes management for the purpose of creating something magnificent. I still have a good many leftovers from all that was sent to me in the fall, but if anyone has an inclination to send more, I do love offering the variety. Plus, I think it means a lot to tell people about the DOC and how the artistic creations made in my workshops are made possible by you.

So that’s the long and short of what’s been happening, or at least the highlights. It’s had me busy, it’s had blogging on the back burner, it’s had reading other blogs on the other back burner, and it’s had Twitter falling clear off the stove. Living life is about making priorities though, and with so much going on, there just hasn’t been time to sit and write a proper post. I think I’d be lost without my little home base here to vent the bad, share the good, and ponder the in-between. Just because I’m not writing as often doesn’t mean I’m not here. It just means I’m knee-deep in other projects that I hope will ultimately benefit the diabetes community, and you can be sure, as soon as I get time, I’ll always come here to share it with you.

Lots of Chocolate

Birds for the Chocolate Bath

After I was diagnosed, my mom almost drove herself nuts trying to manage my diet for a while. Today, as the dedicated user of a nutrition scale, I can vouch that measuring, weighing and counting food can be a chore. I don’t measure everything I eat, just a few staples like cereal, crackers, fruit, and rice, because when I was measuring everything right after I got my pump 6 years ago, it started to totally frazzle me. For my mom, a single mom with a regular full-time job on top of her other full-time job as my substitute surrogate pancreas starting when I was 5 years old, it’s no wonder she was wearing herself thin trying to replicate what my bum pancreas should have been doing on its own.

She told me that at some point pretty early in our lives with diabetes, the doctor realized that at the rate she was going, she was headed for burn-out. He wisely advised her to relax a little, and just do the best she could without going too cuckoo. It should be said that this was during the time of urine testing, Regular and NPH insulins, and exchange diets, so at the end of the day, there really was only so much anyone could do to be exact anyway. A piece of cake or a couple of cookies were really no more dangerous than going swimming using those rudimentary diabetes management tools. I don’t actually recall exactly how my mom managed sweets and treats during the first couple of years, but it seemed that once the doctor gave her permission to be less regimented about my diet, she figured out how to let me have occasional goodies without compromising my overall diabetes management.

I have distinct memories of occasions when my mom let me have the foods that non-diabetic kids take for granted. In 3rd grade, I had a birthday party at Chuck E. Cheese, complete with cake, the obligatory ice cream sundae bar, and pizza, of course. Although at that time, we didn’t realize that the pizza was probably no better for my BG than the cake and ice cream. It might have been that same year that she took me to get a birthday banana split too, completely taking me off-guard. I knew a little ice cream was a treat, so a lot of ice cream with whipped cream and hot fudge was beyond my imagination. When I was in 5th grade, I made my first birthday cake, and did so for many years after that because when you buy a cake, you don’t get to lick the batter out of the bowl. Then there were many occasions during my tweens and early teens when my mom and I would bake cookies – and eat cookie dough. My mom really did try to make food and eating as normal as possible, and while it wasn’t quite enough to oppose everything that contributed to the unhealthy relationship I had with food for so long, I think it helped me develop the healthy approach to diabetes dietary management that I have today.

The Main Event and Accoutrements

Occasionally, I see diabetics or their caretakers expressing concern about partaking in the sugary things in life. My feeling is that unless there are extenuating circumstances, there really isn’t any reason why we shouldn’t be able to have a serving. I can’t speak for T2’s since their regimens can vary greatly, but for T1’s, take some extra insulin and indulge a little. If we don’t deserve a few bites of sweet, delicious decadence, no one does. Plus, the contrarian in me would be lying if I denied relishing the symbolic middle finger to diabetes that comes with eating a Milky Way.

In light of what I learned from my mom as I ate that banana split 30 years ago, when I got the evite a few weeks ago to the chocolate party that my friends were hosting, it should be no surprise that I was all over it like whipped cream on a sundae. As far as I was concerned, it would be totally dishonorable of me to forfeit an invitation such as this simply because I have diabetes. (Not that diabetes can’t be a good excuse for stuff, if used strategically, but that’s another blog post, and you didn’t hear it from me.) Our always gracious hosts, Scott and Kristen, would supply the chocolate fountain, and their guests were to supply goodies for dipping or other chocolate-infused delicacies. I responded that I’d be there, but I’d have to get back to them about what I’d bring since I had too many other unsavory items on my plate at that time.

I got the evite reminder late last week, and remembered I had never decided what to bring. By Saturday, although I’d been contemplating some options, I’d still not made a decision. I looked at what others were bringing, and some of the basics were covered – strawberries, marshmallows, and pound cake. I thought about bananas, but worried about them turning brown if they sat too long. I thought about nuts, but thought they might be too messy since they can’t be skewered. I thought about coconut, which led me to macaroons, but if I went that route, I’d want homemade, and I wasn’t about to start making macaroons hours before the event, especially since I had never made them before and I’d have to go to the supermarket on the morning before Easter Sunday when I was sure everyone and their Aunt Myrtle would be hunting for ham.

It seemed the perfect time to turn to Twitter because I was certain the tweeting masses would have the answer I was seeking. Suggestions ranged from bananas and nuts, which as I said, I was considering, to things like Oreos, pineapple, oranges, gummibears, and chocolate chip cookies. Then there were some more exotic ideas such as coffee beans, potato chips, and mild chili peppers. Two people even swore by chocolate-covered bacon. My beloved friend, Tina, whose culinary advice I covet since she was a pastry chef once upon a time, recommended cheesecake, balled with a melon baller, and slightly frozen. That sounded delicious and easy, which is a testament to just how unambitious I was feeling since as much as I wanted to try it, I wasn’t motivated enough to do it.

In the end, I took the easy way out. On the way to the party, we stopped at the supermarket, and I grabbed two bunches of bananas. I thought I could slice them as needed to keep them from sitting and getting brown. With all the carb-errific stuff that I knew awaited me, at least the bananas had some nutritional merit. Plus, if there were leftovers to take home, I’d be in far better shape with bananas than cheesecake since Jason doesn’t like cheesecake, and it would be wasteful to not eat it.

My BG was OK before we went to the party, but even though I never ate any real dinner, it decided to climb. Then I ate some chocolate, and it continued to climb. And climb. I think I hit about 340mg/dL and had stopped grazing for the night before my boluses started to register. By the time I went to bed, my boluses had caught up with me – I checked in at 61mg/dL a little after 1AM. I drank some juice, went to bed, and woke up around 4:30AM at 50mg/dL. It was a bit of a rollercoaster, but, as always, the BG rollercoaster eventually comes to a stop, even though it’s invariably a brief stop. I could hardly complain when I finally awoke at 133mg/dL after the previous night’s chocolate onslaught. I could have done without the wildly fluctuating BG’s, but it wasn’t as horrible as it could have been since I ended up wearing almost as much chocolate as I ate.

I'm Messy

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.