I Lied

This is my first post on Diabetically Speaking in a really, really long time. The last thing I published here was on October 23, 2015. 988 days ago. It’s not that I haven’t been doing diabetes things, I just haven’t been doing them here. So what inspired me to post now, after all this time? Well, I had an appointment with my endocrinologist today and…

I lied.

I lied a lot.

I didn’t mean to. The lies just started, and they kept falling out of my mouth, and I couldn’t stop myself.

liabetes

The nurse called me to the back and we went through the usual rigmarole of height, weight, and other fun basics. No problem there, except I remain confused why they measure me for height every time I’m there. Are they trying to pinpoint the moment when all of the hours spent hovering over a keyboard and glaring at a computer screen finally leaves me with a hunched back and and a driver’s license that needs updating? Why can’t they just accept that I’m 7 feet tall like I tell them? (I’m 5’8″.)

Then the nurse and I sat down together, which is cool, and we started working our way through all the little dings that the electronic medical record wants updated.

Are you still on Novolog? Yes. (Honest answer.)

Are you still on a pump? Yes. (Honest answer.)

Is your insulin to carbohydrates ratio the same? Yes. (Honest answer.)

Are you still using approximately the same daily amount of insulin? Yes. (Honest answer. I’m on a DIY closed-loop system, so it varies. But overall, sure. Let’s go with that.)

Are you still using OneTouch strips? Yes. (Honest answer)

And then it happened…

Are you checking your blood sugar at least 4 times a day? Yes. (Honest answer.) And no. (Also an honest answer.) *cue the awkward Nurse pause*

I have the Dexcom G5 continuous glucose monitoring system. I check my blood sugar dozens of times a day. Some days, maybe even 100 times a day. I can do this because I wear a sensor, and I can see my blood sugar on my phone and whether it is trending up or down or holding steady in near real-time at any given moment. The G5 systems requires me to calibrate it twice a day. So if we’re counting fingerpricks, I do that twice a day. Rarely more than that simply because it’s unnecessary unless something weird is happening (like if I feel low, but my Dexcom says I’m not… I have trust issues).

trustfund

My health insurance wants to know that I am pricking my finger at least 4 times a day. To them, that means I’m staying on top of my diabetes and all the silly and incessant decisions that it requires every single moment of every single day. So, I lied. Yes, I prick my finger 4 times a day. If you ask me for my logs, I’ll lie then too. BECAUSE IT DOESN’T MATTER HOW MANY TIMES YOU ARE PRICKING YOUR FINGER WHEN YOU ARE MONITORING YOUR BLOOD SUGAR 24/7 WITH A CGM.

Are you still taking your statin? Yes. (Total lie. I should be. I’m just not. Mainly because I forget. In my defense, I did walk that lie back a little and confessed that I need to do a better job of taking my statin regularly. Small victories.)

Are you exercising regularly? Yes, when I can. (Liar. I work at a university, and take classes, so I walk across campus almost every day. Is that exercise? I mean, it’s better than sitting on my duff and not doing anything. But I’m not getting that heart rate up and pushing any boundaries. So definitely room for improvement.)

Are you in any pain right now? No. (Why are you doing this?! You literally can’t write with a pen and pencil anymore without having to shake the pain out of your carpel tunnel riddled hands!)

Have you felt down, blue, depressed in the past week or two? No, I’m fine. (Help me! I am literally seeing a therapist (recent occurrence) to try to figure out how to manage my depression, deal with being overwhelmed almost every moment of every day, figure out how to be happy more consistently, and how to unpack and process things in my life that I do not have the tools to know how to deal with. I’m a picture of success on the surface, and an absolute mess underneath it all. I’m highly productive, and I keep most of my problems inside. I feel extremely vulnerable even sharing this paragraph. Ugh. Gross. I’ll probably just keep lying about this one.)

imfine_helpme

Source: https://weheartit.com/entry/28685038

The visit was relatively uneventful. Mainly because I lied. A lot. But the thing is, why did I feel like I had to lie in the first place? Shouldn’t I be trusting these people to help me, to make me the best I can be, to guide me toward living to be 400 years old? I’d probably be Hobbit-sized by then if they keep checking my height, but at least I’d be as healthy of a Bagginses as I could be.

gollum_truth_notlistening

This sounds like I’m assigning the blame to someone else, but hear me out. I’ll own my lies, but it is important to realize that there is a reason for them. The reason is a systemic problem in our healthcare system. We are encouraged to lie to our healthcare professional partners all the time. The lies are even incentivized!

If we don’t lie, then we admit that we are imperfect humans, and our health insurance then has reason to deny our claims, charge us higher premiums or additional fees, or even cancel our coverage altogether. Bagginses don’t like punishments. That doesn’t happen in ever case, and shouldn’t happen in ANY case, but it does. So many of us have been denied coverage of some necessary medical device, medication, or treatment, and had to fight an uphill battle to appeal to a name without a face that we truly do need whatever it is to live with or overcome our condition.

If we lie, we can sleep at night, resting assured that we have insulin, strips, needles, pens, pump supplies, CGM sensors and transmitters, and the infinite recipe of other medications and supplies that go along with our living well with diabetes and any other chronic condition the world may throw at us. Sometimes, many times, lying is easier than being honest.

I really wish our healthcare system would stop making us lie to them. I wish these electronic medical record systems would stop trying to quantify what it means to be well and be sick. I’m a researcher, so I get it, data is important. But data is useless when it is so blatant that you are simply collecting metrics. That is when you get rote answers, and lose the humanity that should be paramount to everyone’s participation in healthcare.

anthonybourdain_withtattoosRecently we all lost Anthony Bourdain, and he was a master at asking very simple questions that allowed the people he interviewed to open up to him. I want my healthcare people to do the same with me. Sit down with me, away from the computer, and ask me very simple questions. How are you doing? What brings you in today? What is one thing I can do to help make your life better today? As Anthony Bourdain did with the people he met, ask me, directly and compassionately, what makes you happy?

I promise I won’t lie.

A Bunch of Sensitive Pricks

I feel like it hurts all over. It shouldn’t, but it does, and sometimes it makes me really want to just stop with all the pricks.

The past several weeks, I’ve started really feeling like a pin cushion. After 34 years with diabetes, you’d think I’d be used to the pricks, pokes, and prodding. But I’m still not used to it.

This week, every time I prick my finger, it hurts. When I put in my infusion set, which I pretty much religiously use my stomach for and rotate sites, it feels like I am pressurized. Pretty sure one of these days I’m going to poke myself with that long ass needle and I’m going to explode like the Kool-Aid man running full speed into a wall. I’m apologizing in advance for the mess that someone is going to inevitably have to clean up. (Sorry about that.)

Red Powder Explosion

(I found this image on a blog documenting a project doing powder explosions. It’s amazing, and perfect, and I’m jealous that I didn’t get an invite to do powder explosions with them. So if you guys are reading this…can I play next time? Please? Because, so awesome.)

I hate every single time that I have to change my infusion set, and stab that wicked long needle into my skin, knowing good and well it’s going to hurt. I do it, because I love being on my insulin pump, and getting to say that I’m bionic. I feel like I have more control of my diabetes because of my insulin pump and continuous glucose monitor. But the infusion sets and the sensors, it hurts. Every. Single. Time.

We people with diabetes talk all the time about how difficult it is to keep our blood sugar in range, and get frustrated because we’re running too low or too high. But I feel like we often gloss over some of the details that really, quite frankly, and literally, are painful.

This isn’t a blog post full of solutions, and advice, and magical words that can be said to make this junk less “ouch.” It’s just to acknowledge that it freaking hurts sometimes, and if it hurts for you too, you’re not alone.

Diabetes as a Disability

Day 2 of Dblog Week 2015 is about those things that we keep to ourselves, and don’t necessarily like to talk about out in the open. Many of us share lots of aspects of our diabetes lives online for the world to see. Today we get to discuss some of the aspects of diabetes that we choose to keep private from the internet, family, and even friends. Why is it important to keep things to ourselves?

DiabetesBlogWeek7

Recently I was asked to complete a survey on employee demographics. You know, the basic questions that it doesn’t take anything more than looking in a mirror to answer. Male, caucasian, brown hair, eyes that change color, glasses when I remember where I put them, no piercings (just holes where they used to be), tattooed, sneakers > dress shoes, untucked > tucked, tie over top button, and plaid if there is ever a choice.

Okay, so maybe they didn’t ask all of the questions that would lead to those answers, but for an employee demographic survey, it didn’t take long to get real personal. One of the sections asked me to voluntarily self-identify any disabilities that I have. I’m thinking, “Okay, so they want to know if I’m physically disabled, if I need accommodations to get to and fro, or something like that.” As I read through the list, I began to feel like it was less and less voluntary, and more and more accusatory.

Disability Disclosure Survey

I will be the first to say that I’m biased when it comes to surveys like this. Whether they are at work, at the doctor’s office, or as part of a contest to win a lifetime supply of alcohol swabs and cotton balls, these questions feel loaded, and require a person to think about themselves in a very particular way in order to answer them effectively. And for the life of me, I have a really hard time thinking of myself as “disabled” because of my diabetes.

I imagine many people with diabetes and other conditions on this list feel the same way. It is extremely difficult to think of ourselves as disabled, or that we might need special accommodations because we have to live with something outside of our control. The fact is, even without any of these things, any one of us could need special accommodations at any given point in time. But does that make us “disabled” because we are strong enough to admit that we might sometimes need help?

Diabetes as a disability is not something I like to think about. I don’t want to talk about it. I don’t even want to imagine it. Even if, in reality, diabetes or complications thereof may become a disability for me, it is not something that I am willing to give more than just a brief moment of panicked thought about.

Diabetes is challenging, but so is PTSD, depression, MS, epilepsy, cancer, and every other alleged disability on this survey. Yet, having any of these conditions does not make us disabled. As much as a disability is a physical challenge, it is also an allowance that a chronic condition is strong enough to limit us from doing the things that we accept that we are capable of doing.

For now, for this survey, I don’t wish to answer. None of the items on this survey, regardless of how many I may have personally, are anything that I am willing to accept as a disability. That does not mean that I may not need special accommodations from time to time, but that simply means that I’m human, not that I’m disabled. We all need help and special accommodations sometimes, and we shouldn’t be labeled negatively because of those needs.

Even for a lifetime supply of alcohol swabs and cotton balls.

The PLAID Journal

I love Dblog Week. This annual event when we hear from the diabetes online community (DOC) about shared themes and ideas is always fascinating. I especially love that Dblog Week is accessible to everyone, and embraced by those who are a part of the DOC and those that quietly just need to know that there are dozens of other people living with diabetes…and doin’ it and doin’ it and doin’ it well.

DiabetesBlogWeek7

Today, the blog theme of “I can…” is meant to showcase the positive side of our lives with diabetes. What have you accomplished, despite having diabetes, that you weren’t sure you could? What have you done that you’ve been particularly proud of? What good thing has diabetes brought into your life?

Conveniently enough, today is the day that my team in the medical library and I published the very first issue of The PLAID Journal, an open access, peer-reviewed journal for and by “People Living with And Inspired by Diabetes.” PLAID is one of my dreams come true, and I am so proud of what we have created, and thankful for the almost year and a half of hard work that has gone into making it something both accessible and legit.

People with diabetes is everyone. The PLAID Journal is meant for everyone. Each of us is touched by diabetes, whether we have it ourselves, or whether we know someone who does.

When my team and I set out to create a new journal, I really wanted to see the things that we blog about and share online reach the academic literature, and become part of what we research, study, and use to progress living well with diabetes. I want our voices of needing better technology, more comprehensive health insurance coverage, and greater access to mental and physical health professionals to be heard, and supported through scientific and social research.

With The PLAID Journal, I want to take the personal things that we share with the world every single day and give them a vehicle to travel beyond just the diabetes online community. I want our passions to reach the people that can provide us with the evidence to create the change that we so desperately need in our diabetes world.

To make PLAID successful, I need your help. I want you to read, share, and contribute to The PLAID Journal. I want you to encourage researchers to publish in The PLAID Journal. Over time, PLAID will only grow stronger because it is built on our voices, our needs, and our experiences. When you read The PLAID Journal, I want you to imagine all of the things you CAN do, even with diabetes. I want you to dream. I want you to be successful.

With diabetes.

PLAID - Start the Conversation

We Interrupt This Irregularly Scheduled Diabetes

I’ve been running high lately, and I don’t know why.

BG 220

That’s a lie. I know why. I eat too much, too often, and too late. Or I don’t eat, and then I go low or get super hungry, and then I eat all the things. Dang those holiday treats!

Eat All The Things

I haven’t been working out, exercising, or bringing sexy back. I have a gym membership, so accessibility to a place to exercise certainly isn’t the problem. I always find some seemingly good excuse for not getting there. First I was busy trying to find a new place to live. Then I was busy moving. Then I hurt both hands during the move.

Hurt Hands

Then I got even busier than usual at work creating something that I am extremely excited about. We are starting a new diabetes journal, available to all, and we’re now accepting research and volunteers to be peer reviewers. Check out The PLAID Journal. You can see a couple of videos and news articles about the The PLAID Journal on the Announcements page. Also, the Facebook page for PLAID. (Lots more to come on PLAID, so stay tuned.)

PLAID - Start the Conversation

Then the knee that I hurt while cycling several years ago flared up again. Add to all of that an ever-growing to-do list, and there is always something that keeps me focused on something other than me.

I hate it. I hate the feeling of my blood sugar being high. I hate that I can’t get my BG to stay where I want it. I hate when I prick my finger and see a number that is dramatically higher than I feel because my body is getting used to it. I hate being thirsty. I hate waking up in the middle of the night to go pee. I hate thinking about it. All. The. Time.

I also hate being overweight. I hate feeling like I am the overweight that I am. I know that we’re in an age where we are supposed to accept our bodies and all that jazz, but this is not normal. I can’t just accept this. I don’t feel like me at this size. I feel like I’m stuck in a heavy fat suit, and everything I do is just that much harder because of it.

But for whatever reasons, I can’t seem to change it.

Before April of this year, I was on Weight Watchers, and I was doing pretty well with it. I had lost over 10 pounds in three or four months, and was feeling pretty good. I was on track to get back to a weight and size that I wanted to be. And stronger. And back to a more human shaped geometry, instead of just round.

Martin and Amanda on Bicycles

Today, I’m the heaviest that I’ve every been. Almost 207 whopping pounds. I put that out there for no other real purpose than to make it real. I should be about 170, in an ideal world. And I’ve seen a human skeleton. Short of an anatomical anomaly, there is no such thing as “big boned.” I’m just plain old overweight right now.

As joyous as April started out with Amanda and I tying the knot in beautiful Key West, it ended in tragedy with the loss of our precious little cat Squirt, and I know that losing her has played a role in where I am now. To some it may sound silly (she was so much more than “just a cat”), but she was a part of my life every single day for nearly 14 years. It feels like the loss of an immediate family member, because that is exactly what it is. I think dealing with that loss, on top of everything else already mentioned, has made me do things like eat my emotions and talk myself out of doing fun active things.

Squirt in the Window

Working out and exercising has always been like therapy to me. Be it gym, walking, running, or cycling, it’s a safe place for me to get out all of my stress, frustration, anger, aggression, sadness, and any other negative emotions that I’m dealing with. Some days I only need 30 minutes or so. Other days I might need a couple of hours. It also makes sure that I have a few minutes during normal human hours of the day that are just for me, Martin Wood, where I’m not making sure that the needs of everyone else are being met.

It’s my career choice to help people, and it is a major part of who I am, and I love it, but sometimes in order to help people we have to make the time to help ourselves. I haven’t been doing enough of that. Now that we are in a neighborhood where there is less chance of going for a walk or run and interrupting a drug deal, I finally feel that spark of motivation to get out of the house and move around.

I also enjoy doing other things, like reading, video games, movies, and basically anything that doesn’t involve repairing yet another kitchen appliance in my house. Sometimes it’s hard to make room for those things, but we have to. Down time is as necessary to life as to-do lists and full calendars. A friend said recently that “cancelling a holiday commitment is like heroin.” Try it. Substitute an evening on the couch with the dog and the first half of this season of The Walking Dead. (Beth…noooooo!!!)

Life with diabetes is freaking hard, man. Life with diabetes is about so much more than just diabetes. Life with diabetes is a complicated balance of biometrics, medical therapies, activities, unexpected events, important considerations, random emotions, bright sides, dark places, and things left unsaid that have to be factored into an inarticulate equation that hopefully results in a personal definition of success.

All of this is what it takes to get my A1C where I want it, to get my BG’s on a more level plain instead of high or bouncing all over the place, to get back to Weight Watchers and better control of all of the delicious things that I’ve been cramming into my face hole, to develop the strength and stamina to avoid future injuries, and to drop some pounds and be able to haul ass without it taking two trips. That is what it takes to focus more on the things that I do have in my world that bring joy, for me, Martin Wood. Like these two…

A and H

That is what it takes to start to feel better. To feel happy. To feel able. To feel normal. And if I can’t do it on my own, then I’ll have to figure out who the right people are and get them on my bus to help me get further along down that road. For now, it’s one mile at a time.

–MW

Diabetes at AADE’14

In August, diabetes educators from all over the nation traveled to Orlando, Florida to attend the American Association of Diabetes Educators Annual Meeting 2014. I did too. These are my stories.

*ching, ching* (Law and Order style)

AADE 2014

A fellow medical librarian and I arrived at AADE on Wednesday afternoon and went directly toward the Exhibit Hall and registration desk. We were sort of attending last minute, so we knew we would just have to feel out the schedule and learn as much as we could with the short time that we had at AADE. Our goal was to talk to as many folks as possible in an effort to learn what we need to continue work on a diabetes project that we are working on. (More to come on that…say, around November 14th or so. Seems like as good of a date as any. *wink, wink*)

First and foremost, the Exhibit Hall at AADE is enormous compared to the medical librarian conferences that we are accustomed to. Even though some have reported about how AADE is shrinking, it still feels like a big deal to me every time that I go. All two times that I’ve gone. Whatever, it still feels big, and important, and like people making a difference is happening or on the cusp of happening all around me while I’m there.

I had seen it last year at the Philadelphia AADE, but this was my colleague’s first time, and it was quite a shock to her. We started where everybody starts their first trek through the Exhibit Hall…on the side that doesn’t have salespeople staring at us and licking their chops like hungry wolves.

Some folks walk into something like AADE and own the joint. They know exactly what sessions they are going to, what they want to get out of it, who they want to talk to, and are prepared for all of the free stuff that they can carry back home to their practice and patients. If a burro is used, so be it. You get no judgement from me. For this AADE visit, I just wanted to talk to as many people as possible, and learn as much as I could. And I did, often in unexpected ways.

I learned a lot about how Certified Diabetes Educators (CDEs) think about people with diabetes, and that isn’t a bad thing. I learned that a lot of them even have diabetes themselves (both Type 1 and Type 2), which is encouraging. I think it is so important for our healthcare team to understand us, what we need, and what we don’t need as people with diabetes. I wish some folks outside of our healthcare team were more interested in understanding us the way that so many of the CDEs that I met yearn to.

I learned that some CDEs think that us diabetes advocates and diabetes bloggers should be regulated, have an advisory board, and be held to medical standards. There is an assumption, and heck, maybe it’s even true sometimes, that we all give medical advice on our blogs. Fortunately, I know that isn’t true of all of us who share our lives and stories with diabetes online. I stand alongside so many in the Diabetes Online Community (DOC) who do not give medical advice, but can still be a valuable asset to living with diabetes. We understand the burden, and can help you carry it when you feel like the weight is just too much. Sometimes it is enough just to know that someone else “gets it,” and that is where the DOC (in my opinion) is the strongest.

I can’t tell you how many units of insulin you should dose for that hamburger for your diabetes. That is between you and your healthcare team. I can tell you this though: If you don’t have a CDE who you can call at any time, day or night, to ask questions about your diabetes, you should find one or find a new one. The CDEs and other health professionals that I talked to at AADE want you to call them. They want to help with your diabetes. They do not want to have to visit you in the hospital when all it would have taken was a five minute phone call at eleven o’clock at night to get their expertise. And if you do have to go to the hospital, they want to be there for you and help you through. I was touched by how caring the CDEs that I met at AADE were, and to be honest, they far exceeded my assumptions and expectations.

On the second day, as we were wandering around the Exhibit Hall, I found that I couldn’t make a decision. About anything. We were trying to figure out what to have for lunch in the cafeteria section at the back of the hall, and I kept getting in line and getting out of line, not able to figure out what to do once I got to the register to order. I was getting so angry and frustrated, but the only real sign my colleague could decipher was that I was ticked off about something. And I was. I was extremely ticked that I was low, and I had to take time out for diabetes in the middle of a diabetes conference (of all places), and that it was ruining my time there to learn and network.

I finally just sat down in the middle of the Exhibit Hall (like you do when you’re low) and started sucking down Level gels like it was my job. Standing and walking and wandering was just too much work for my low-brainy self. I am so thankful for those gels, as well as the CDE who was sitting across from my quietly noticing my lowness and keeping her eye on things. It’s moments like this one at AADE when my hands aren’t cooperating, I can’t think, and I’m on the verge of whether I can chew and focus enough to swallow that the gels save me. I also appreciate my colleague sticking with me, figuring out what was going on after I was having trouble talking and was breaking out the Level gels, and not rushing me or making me feel like I was taking away from her AADE experience while having to deal with my low blood sugar nonsense.

I guess if you’re going to go low, there aren’t many better places than in the middle of over 2,000 diabetes educators.

Silver Linings

Assuming Positive Intent

I’m disappointed in us. We, people with diabetes, active and vocal members of the diabetes online community (DOC), who are supposed to be there for each other, support each other, lending an ear to listen, a shoulder to cry on, an “I’m high” joke, and the occasional insulin pump reservoir or extra CGM sensor, are demonstrating clear and present signs of being a bunch of jerks.

Over the weekend news broke about Jeffrey Brewer leaving JDRF. He posted on his Facebook page…

JeffreyBrewer_FBPost_07-20-2014

Jeffrey, in his tenure as the top dog over at JDRF, seemed to give those of us who are adults with Type 1 diabetes (T1D) something we could get behind and support. We felt listened to, for a change. The re-branding of JDRF under his helm, and the focus on those things that make living with diabetes better, and still the same focus for the as yet unattainable holy grail cure for diabetes, inspired us. As adults with diabetes, we felt like we could really support the efforts of JDRF, some of us for the first time, and some of us again after years of feeling left outside of the scope of what JDRF does. We could imagine living better with Type 1 diabetes, something that the world often does a better job of telling us we can’t do.

I don’t pretend to know all the ins and outs of what is going on behind closed doors at JDRF. I am a new member of the JDRF Type 1 Diabetes Voices Council, and I found out the news at the same time as the rest of the world (or at least the Facebook world). I’d be upset about that, but honestly, I get most of my news from Facebook and Twitter anyway. If it is important, someone will share it. And share it they did.

People from all over the internet expressed concerns about what would be next for JDRF. Overwhelmingly, nobody liked the idea that Jeffrey Brewer was leaving and moving on to whatever happens after you are a CEO of an international diabetes research foundation. I like to imagine that there is probably a lot of secret bases in volcanoes, flying Big Boys, sharks with laser beams, and fembots. I’ll report back when I get to that spot in my career. In the meantime, I wish Jeffrey Brewer nothing but the best as he moves forward.

On Monday, news hit the wire that Derek Rapp would be the new interim CEO of JDRF. My friend Amy, who is interning with JDRF this summer, wrote a great post detailing what was happening in JDRF HQ with all of this news.

JDRF_AmyFord_Transition_07-21-2014

Not surprisingly, change was met with extreme belligerency by some, a few folks who even went as far as creating a Change.org petition to have Derek Rapp denounced as the next CEO of JDRF. Some folks aren’t comfortable with Derek’s background with Monsanto, and want to blame Monsanto for causing increasing numbers of diabetes diagnoses, citing conflicts of interest and all kinds of claims. I won’t disagree that Monsanto is a questionable organization in many ways, but no successful company can be all bad and still be successful in business. That said, if you have the academic and scientific research that proves Monsanto is the cause of Type 1 diabetes, by all means stop reading this blog and go write that $h!t down right now, get it peer reviewed, get it published, and go collect your Nobel Prize. I’ll be the first person to congratulate you. Until then, all we’re doing by blaming and name calling is demonstrating that kids with diabetes grow up to be a-holes with diabetes.

Dayle summed up the organizational changes of JDRF (and ADA) quite well in her post yesterday…

Dayle_DiabetesOrgs_07-21-2014

With some people sharing excitement about the changes and some spewing venom, I imagined what it is like to be Derek’s son, who is a young adult with T1D. His son is also my friend through being a part of Students With Diabetes together. After thinking really hard about it, I want Turner to know that if he is sick of diabetes and is feeling overwhelmed and needs a friend, or if he rocks a no-hitter on his CGM and wants someone to share that with and celebrate, that I am here for him, always. I want him, and so many other people with diabetes just like him, to know that there is a community of compassionate people just a tweet, a Facebook status, a blog post, or a phone call away anytime that they are needed. I don’t want our diabetes community that I love and cherish to be spoiled by the rotten comments or actions of a few. The absolute last thing that I want is a person with diabetes to feel like they are alone and don’t have someone that they can share this stupid disease with. When we go off on a bashing spree about how evil someone is for taking the lead of a foundation that is focused on making our lives better, we are not being advocates for people with diabetes…we are being hypocrites.

My friend Tye Manor speaks to people about how he always tries to assume positive intent. In this JDRF leadership shift situation, I don’t know all of the background story, but I can make the choice to assume that the reasons for the changes are positive. I am going to assume that the changes are to make the lives of people with diabetes better, to make progress toward a cure, to hear our voices as people with diabetes, and to keep changing so that goals can be met and achievements can be realized. Until there is type none.

I choose to assume positive intent. I’m going to ask the question, “How can I help?” I’m going to be there on the front lines as we are making progress. I’m going to be the diabetes advocate and member of the diabetes online community that I want to see in others. I’m going to be that friend with diabetes that I didn’t have for the first 28 years of my life with diabetes. Because I’m selfish. I want better technologies, better therapies, and better ways to live with my diabetes. I want the bionic pancreas, real bad. I want an encapsulation device that allows me to not have to think about this diabetes nonsense anymore. And I want you to have all of these things too (except maybe diabetes). Because I love you, and I love that I am not alone, and I’m glad that you are a part of my world with diabetes.

And I have zero interest in either of us being alone with diabetes ever again. Pretty much whether you like it or not.

Elmira Hug