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Posts from the ‘Diabetes Advocacy’ Category

Looking Back: Rules of Love.

Today, in response to spending the day fighting traffic for yet another installment of “how long will I be in the waiting room?” at the doctor’s office, I’m revisiting a post from 2012 about love, PWDs, and permission.  It still blows my mind that this book was published, and I remain appreciative of how far we’ve come.

See also:  eff off, Morris Fishbein, MD.

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In Austin two weeks ago, I had the opportunity to finally meet Josiah Hammer (known affectionately across the world as “The Hammer”), who works at Dexcom and is my direct point of abuse contact at Dexcom for when I screw things up.  [Editor’s note:  Hammer is no longer at Dexcom but is now over at Tandem, which is half the reason why I wanted to switch to Tandem because Hammer is majorly awesome.]

During the course of an email exchange, The Hammer sent me a page from an old health book that he found – the Modern Home Medical Adviser: Your Health and How To Preserve It (edited by Morris Fishbein, MD [who, according to many online sources that may be less-than-credible-but-still-cracked-me-up said that Fishbein was originally aiming to be a clown, but realized there was more money in medicine], published in 1942) which included a chart, of sorts, dictating who should shag whom.

Excerpts:

Only four rules. The shortest rule list a PWD has ever seen, to date. About dating. ;)

Of course.  Because all decisions of love are made with diabetes in mind.  There’s something about this chart that makes me both roll my eyes and then picture a diabetes Punnett’s Square.  Love is a tangled web as it is – plotting decisions against a diabetes graph makes things even more complicated.  Thankfully, good ol’ Morris was there to help people sort out who they should be smooching on.  (/sarcasm.)

This book also featured “blameful” and “blameless” diabetes, helping to drive home the misconception that type 2 diabetes is something people should be beaten with a stick for having and that type 1 is the result of hereditary circumstances (just like in my case, where I”m the only diabetic in my entire family, of any kind … /sarcasm once again).

The Blame Game sucks.

Sometimes I look at how diabetes is currently portrayed in books, television, and other media outlets, and I’m frustrated.  It’s a potluck of misconceptions, facts, and always colored by opinion, but it is slowly becoming more accurate, and more “real.”  People are learning about all different kinds of diabetes and the varying treatments, and the discussion about diabetes entering the mainstream is increasingly credible.  But iooking back at the so-called “medical books” from the early 1940s has blown my mind in a way that Steel Magnolias never will.

We have come a long, long way.  And I’m grateful for that.

Guest Post: Diabetes at Work.

When I asked folks in the DOC if they’d be willing to lend their voices and perspectives for a guest blog post, I was excited to hear from Susannah (aka @bessiebelle on Instagram and Twitter).  Susannah grew up in South Australia and is now working as a lawyer in Cambridge, in the UK.  She was diagnosed with type 1 diabetes during the course of her last year of high school (2000) and is currently using a Dexcom with her Animas Vibe insulin pump.  

Today, she’s taking over SUM to talk about diabetes in the work place, and how to handle the moments when discretion is preferred but diabetes still needs attention, and she’s looking from tips from our community on handling diabetes in the workplace.

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A significant aspect of my life with diabetes which I often feel is ignored is how it fits into my career. Diabetes goes with me to work everyday and has seen the highs (completing deals) and lows (being at work at 2am) of work and as well as sugar!

When I started to write this post about working life with diabetes I was armed with a list of anecdotes but I didn’t expect life to serve up another example of when the two worlds collide. One of the frustrating things that any diabetic knows is it can always throw you something unexpected.

After a seemingly average Sunday afternoon gym session Monday morning last week saw me battling a hypo that just wouldn’t respond (to glucose tabs, reduced basal plus bread with strawberry jam for good measure). With heart still racing and a foggy brain at 9am I emailed my boss to let him know I was somewhat delayed but I’d be in soon. Moments like this make me glad that I’ve been open with my boss about being a type 1 diabetic but also make me anxious that I will be judged as less capable because of it.

Am I the only one who feels like that?

The emotional side of diabetes creeps in too easily. After an experience like that morning I’m left worried that I’ll be judged because of it. Being late on Monday morning is the least of it… We all know there are the doctors’ appointments (6 monthly checks, annual reviews, eye checks, and other specialists – always longer than expected and involving long times in waiting rooms), hypos setting you back (sometimes only a few minutes, other times for much longer), pump sites pulled out causing hassle and even spurting fingers resulting in blood stained shirts! Some of these take up more time than others but they all intrude on what might otherwise be a normal day in the office. Something that I’m acutely reminded of when I’m filling in my 7 hours of 6 minute units of time each day.

I fear hypos at work more than anywhere else. I don’t want to explain why I’m sweating at my desk like I’ve been for a run or to be faced by a deadline but struggling to gather my thoughts clearly. I don’t feel any more comfortable in this situation now than I did when I first started work as a law clerk 10 years ago. Luckily, for many years I had the luxury of my own office and the ability to shut the door gave a level of privacy when required. Recently, I moved to an open plan firm and I am having to reconsider many things I took for granted with a (glass) door… pump site changes at my desk are a thing of the past (cue a few panicked mornings hastily inserting a new site and refilling so that I won’t have to later). I’ve been lucky not to ever have a hypo in a meeting, but this is not without taking care. Meetings with clients or all parties to negotiate a document are a balancing act of starting the meeting high enough not to crash but not so high that I feel sluggish. (and that’s not considering the blood sugar spikes from stress).

Thankfully there are the comical moments – taking a draft document to my boss and having to explain the red smudges on the print out (after 15 years it’s fairly easy to squeeze blood from my favourite fingers… I tested as I typed this and got blood on cue!); being in a meeting with the same boss and having my pump alarm go off – after a quizzical expression from a colleague my boss calmly commented “Don’t worry, Susannah’s bra is ringing!” Needless to say my pump alarms are strictly on vibrate these days.

There are moments that call for advocacy whether I feel like it or not. In a previous job I was surprised when HR requested that I remove my spare insulin from the work fridge or alternatively hide it in a container so other people didn’t have to worry about ‘contamination’. Why?! To this day I haven’t quite figured out who raised the concern (or why?!) but I defiantly ignored that request (with colleagues’ support) and also politely explained to HR that it was not a risk to anyone’s sandwich.

I’m always interested to hear how others handle disclosure with their employers (as well as see photos of their diabetes supplies stashed in their desk), and am always surprised by people who manage not to disclose it. I’m yet to perfect my ‘I’m busy having a hypo so please don’t ask me a question face’ so disclosure is what feels best for me. It may not be for someone else (YDMV). In contemplating my days in the office I realise I have it pretty easy if the worst is getting blood on a contract! I’m in awe of the many people who manage their diabetes while being responsible for others (whether a mother, teacher, nurse or doctor, just to list a few).

How do you handle your diabetes at work? Any tips on how to stress less?

5 Worst Things to Consume If You Have Diabetes.

Today is World Health Day and the focus is on diabetes.  Every media outlet in the world is picking up on this health story and twisting it just so, highlighting misconceptions aplenty and feeding the stigma about diabetes.  Messages get muddled and broken down into clickbait headlines that sometimes hurt our community more than they educate.

What are the five worst things to consume if you have diabetes? HINT: This is not a list of foods.  

  1. Misconceptions. Don’t consume them.  There is a public perception about diabetes as a whole and about the individual types – don’t let society’s misinformed views shape your own.
  2. Other people’s misunderstandings. Don’t consume them.  Don’t let people’s ignorance about diabetes ruin your day.  Correct their information and move on.
  3. Misinformed messages from the media. Don’t consume them.  Address and correct articles that perpetuate stereotypes and misinformation. We’ll never be happy, as a community, with a public health campaign, but we can take steps to help shape it in a way that feels right.  If not us, who?
  4. Anger and hatred towards our community. Don’t consume it.  People get angry about diabetes and the people who have it are often the target of blame, shame, and disgust.  Don’t let anger infiltrate our community.  We’re better than that.
  5. Stigma. Don’t consume it.  Don’t swallow it and don’t let it define you.  Taking care of your health is nothing to be ashamed of, so wear your efforts towards good health with pride.


What do I wish people knew about diabetes?  This:  

There is more than one kind of diabetes.  This isn’t a knock on my type 2 and gestational diabetes friends, but definitely a knock on society’s perceptions at large.  People have one musty, old perception of what diabetes looks like, and it’s always someone older, heavier, and lazy.  Would they be surprised to meet our fit type 2 friends, or the 20 year old gestational PWD?  Or a “juvenile diabetic” who isn’t eight years old? Or any of our community friends? Diabetes doesn’t have “a look.”

Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows.  But I’m not the only one affected by diabetes.  My parents had to care for me when I was young, acting as my pancreas.  My friends have been affected by my lows and highs while we’re hanging out, sometimes forced to jump the bar and accost the bartender for orange juice.  (True story.)  And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don’t feel alone.  Diabetes isn’t just mine.  It belongs to everyone who cares about me.

Diabetes isn’t just a physiological disease.  Mental health matters when it comes to diabetes management. It’s not just a question of blood sugar levels and insulin supplementation.  It’s about managing the emotional output that comes as part of life with a chronic illness.  It’s about the guilt of complications.  The pressure to control an uncontrollable disease.  The hope that tomorrow will come without incident. I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level.  Maybe more so, because life needs to be happy, whether it’s a short life or a very long one.

Diabetes isn’t easy.  We just make it look that way sometimes.  Some of the perceptions that the general public has is that diabetes is easy to handle.  “You just wear the pump, test your blood sugar, and watch your diet and you’ll be fine, right?”  Wrong.  You can do the exact same thing every day and still see varying diabetes outcomes. It’s never all figured out.  Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn’t.

No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects.  There’s no winning combination and no “right” way to deal with this disease.  Being on a pump means you use a pump to infuse your insulin – this doesn’t necessarily mean you are taking better care of yourself than the person who opts for injections.  Low-carb doesn’t work for everyone, and neither do certain medications.  What works for you may not work for everyone. It’s important to remember that this disease, like life, doesn’t have a predictable path, so there are plenty of “right’ ways to handle it.

Just because we don’t look sick doesn’t mean we don’t deserve a cure.  That statement sums it up for me.  We might make it look easy, but it isn’t.  There’s no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling.  And their effects are devastating.  Diabetes, of all kinds, deserves a cure.  No one asked for any of this.  We deserve better than society thinking that diabetes isn’t worth their attention.

We deserve, we fight for, and we advocate for a better life, better health outcomes, … we deserve a fighting chance for a cure.

Guest Post: Diabetes Isn’t Easy, But Acting on Policy Can Be.

This morning, Bennet Dunlap is taking over SUM because he has something to say.  Changing health policy has become a project of Bennet’s for personal reasons, and with the help of the diabetes community, he and others are aiming to make a difference.  Today he’s writing about the Diabetes Patient Advocacy Coalition and how it’s aiming to be the “easy button” for the DOC and policy.  

And because he used the phrase “rat bastard” more than twice in this guest post, I’m particular partial to it.

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Diabetes is not easy. It doesn’t fit well into life. Diabetes is chronic – a word that here means the rat bastard never goes away. Never going away doesn’t fit into a medical system designed for acute care, meaning a cute little health issue that gets cured.

Readers of Six Until Me already know diabetes is not cute or cured, doesn’t fit into life, and is the aforementioned rat bastard. So you are probably not shocked to know that diabetes doesn’t always fit into health policy either.

Health policy runs into diabetes at many levels. There are more than three dozen federal agencies that touch diabetes. State laws impact schools, diabetes education, and even infection protocols in hospitals and extended care facilities. All the people, in all those positions, have all the same mix of understanding and confusion about diabetes as the general public they represent. A few get it; most don’t and some are woefully misinformed.

I suggest that living well with diabetes is a model for good diabetes policy advocacy. We live better with the help of others. We have healthcare teams to help with the clinical aspects of care and help translate academic advances into those programs. We have communities to help with the equally important psychosocial aspects of staying engaged with the rat bastard, diabetes.

On the policy side, we have professional and academic groups that speak to the science of policy issues. There is a whole bowl of AlphaBits of these including ADA, JDRF, AACE, AADE, DTS, CDC, NMQF and more. I think that policy advocacy is most successful when health professionals and patients work together. A FasterCures white paper on advocacy, Back To Basics, as a catalyst for health policy change writes:

“The gold standard should be to have both scientific expertise and a group of patients who can speak both to the science AND the urgency needed to make change.”

Our job is urgency.

Change happens when officials hear the real needs of people with diabetes, particularly when we are their constituent. But if diabetes does not fit into life, learning the intricacy of politics certainly is one more unpleasant thing too many.

What we need, is an easy way to create diabetes policy urgency.

I got that, in another spoon full of AlphaBits; the Diabetes Patient Advocacy Coalition. But that doesn’t fit on a spoon so DPAC for short. It makes it easy to keep track of issues, opportunities, find your elected officials, and know those officials’ positions. DPAC does all that so you don’t have too.

Most importantly DPAC makes it easy to act.

Here is an example: We all know that CGM is a game changer in diabetes care. Medicare does not cover it. Many succeed in fitting diabetes into their lives with the help of CGM, and they lose it as a care tool when they age into Medicare. That is not right. One hundred and eighty-five members of the US House and thirty-seven senators agree. They have cosponsored a bill to cover CGM. We should thank the supporters and urge others to join.

DPAC makes that easy.

Click the logo, fill out your address, and the DPAC will look up your elected officials. It checks to see if they have already cosponsored the bill and drafts a note of thanks to supporters or an ask of those who have not yet joined as cosponsors, to do so. You can add your story to the message or just send the message along.

Easy.

I mentioned three dozen federal agencies earlier. There is a bill to have them work together. A generation ago a similar effort brought us DCCT and tight control. A new generation of drugs, devices, a software promises another opportunity to change diabetes care. DPAC has an easy button there, too.

Diabetes is chronic; that means we need to keep at it to be successful. We need to keep at policy too, or elected officials will think the rat bastard has gone away.

Diabetes isn’t easy but PDAC makes it so acting on policy can be.

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Bennet is a passionate advocate for better diabetes care.  He is the father of four, two of who live with type 1 diabetes. Like millions of Americans, Bennet tries to be successful with type 2 diabetes himself.  He has created a variety of social media projects including the advocacy campaign StripSafely, DrinkingWithDiabetes a resource for families sending type 1 students to college, The Diabetes Patient Advocacy Coalition and his blog Your Diabetes May Vary. Bennet is an integral member of the Spare a Rose / Save a Child community supporting the IDF’s Life for a Child program. Bennet has given patient perspectives in public views before the FDA’s Endocrine and Metabolic Drug Committee on diabetes medication. Recently he has been a consumer reviewer for both PCORI and CDMRP grants.
 
With a degree in finance from Lehigh University, Bennet pursued a career in commercial banking. Following the diagnosis of his children with type 1 his passion for advocacy grew and he earned a master’s in health communications from Boston University to serve better the diabetes community.

Fingerpricks: An Interview with Haidee Soule Merritt.

Haidee Soule Merritt has the uncanny ability to illustrate what’s going on in the minds of many people touched by diabetes, and she’s sharing her talents yet again in her second book, Fingerpricks, Volume 2.  It’s not that her cartoons are just good, but they are poignant and insightful and have a way of seeing diabetes through a very specific, very honest lens.  Her work is a little dark, at times, but that makes sense because diabetes isn’t always a laughing matter … but sometimes a good smirk helps take the edge off things.

Her work resonates on so many levels for me, and I’m excited to share an interview with her today on SUM.

Kerri:  Would you mind sharing a little bit about your diabetes diagnosis and your experiences with diabetes?

Haidee:  I was diagnosed with T1D at the age of 2 ½ at the Children’s Hospital in Boston. Obviously, the early 70s was still the Dark Ages in terms of diabetes advancements. Synthetic insulin hadn’t been invented yet and there were no at-home test meters to speak of. At that time in my history I feel worse for my parents than I do for myself: I’m the one who doesn’t remember it.

My experiences with diabetes are what tell the story of my life. What else has been so reliably present?

Kerri:  Your first volume of Fingerpricks is a dog-earned one in my house because the illustrations show a raw and poignant version of diabetes, one that people don’t often share or see. Can you talk about why you decided to tackle this side of the diabetes experience?

Haidee:  Oh, that’s so great to hear, Kerri! I speculate that this side of diabetes exists for all of us in one way or another. This book consists, for the most part, of an edited selection of my personal thoughts; my hope is to reach people who don’t let thoughts like this surface as freely as I do. For non-diabetics, I think it’s essential to understand diabetes isn’t just watching what you eat and taking insulin. All books on diabetes contribute to the understanding of this disease.

For me, tackling this side of diabetes is cathartic, so somewhat selfish. Plus, there’s a small percentage of the diabetes community that appreciates the humor—or an appreciation that the humor is recognized. (There’s an even smaller percentage of people who know my work.) I am secretly very satisfied with the small number of accolades I get because, to me, they’re from the right people.

There’s a cartoon I did years ago that I would say is the most widely shared, re-posted, “liked” and from which I’ve had the highest number of responses. (Sadly, I’m not that flattered because it’s not the illustration itself that’s getting the attention.) This interest was a strong indicator that people really want others to know what goes on in our heads. Part of the motivation for this publication is based on that.


Kerri:  One of my favorite cartoons is “You don’t LOOK like a diabetic.” “Smoke and mirrors, my friend.”  When did you realize that diabetes was something that made you feel exceptional instead of an exception?

Haidee:  Oh, I think I’ve always had it. As an adult I’m just comfortable to own it. It’s saying what we’re all thinking. The cartoon “Don’t waste me time” ties directly into that mindset. A lot more is demanded from a person with diabetes, whether that’s visible to the world or not. You “bring it” with no choice about the matter. Luckily, another diabetic can appreciate it. I don’t have the time or patience for people who don’t move as efficiently through life as the majority of diabetics do. For every one thought people without diabetes have, a person with diabetes has 5-10. This is proven research that I’ve done myself.

Kerri:  Can you talk more about the “You’re so brave!” illustration?

Haidee:  Yeah, I think that’s a shitty thing to hear your whole life when you really have no choice about the matter. It used to make me really angry and I was torn about how to respond. To me, courage and bravery are not the same. Bravery is a bold, fearless spirit, bordering on dramatics or thespianism. Courage is doing something you don’t want to do with a stiff upper lip. Like the commentary for that image says, Bravery implies that there’s a choice, a conscious decision to choose the option that puts oneself in the path of a risk.

I’ve determined that the correct response is: “It’s amazing what courage you can find in yourself when faced with challenges.”

Kerri:  What’s the backstory/inspiration behind the “Is our love strong enough for this kind of honesty?” cartoon? It’s one of my favorites, because it really hits on the emotionally fragile battleground that data sharing can become.

Haidee:  There’s no real back-story or specific inspiration, just an observation. It’s funny how we determine which individuals we’re honest with and those we keep at arm’s-length. It’s a strange and specific kind of intimacy that data sharing (I like your term) represents. Is it an indicator of how solid the relationship is? “If you really love me you’ll show me your numbers” vs. “If you really love me you wouldn’t ask.” The diabetic is certainly the one in the driver’s seat here though, for once.

Kerri:  What do you hope people think, or feel, after reading through Fingerpricks, Volume 2?

Haidee:  That it was worth $18.00. Really, the book jumps all over the place so I don’t think there’s one specific thought or feeling that I have in mind. I published this book for myself.

Kerri:  What’s next for you and your journey as an artist and storyteller in this community?

Haidee:  Who knows what the future holds. I contribute illustrations to various people and industry sites so they pop up now and then. I prefer my work to be reflective of myself, my perspectives and feelings, and a lot of publications can’t embrace that in its entirety. I totally get it. I guess just keep an eye out for future books?

Did these cartoons make you laugh?  Make you think?  There’s more.  To pick up a copy of Haidee’s latest book, click through to her website and purchase Fingersticks, Volume 2.  While you’re at it, grab a copy of Volume 1.  You can throw some love to Haidee and Birdwing Press on Facebook, as well. 

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