My words are mine and mine alone. They may give succor to you in the dark of night when you can’t sleep. They may incite incendiary riots in your head which burn for days. They may speak for you or not. My words can bring you closer to me or force you to turn your head. You may question my right to speak them with authority. I don’t force you to read or listen or share. They are mine to freely give. Whether you accept them is up to you.
I don’t owe you my motives.
Whether I advocate for myself or others, my motives are mine and mine alone. You may not understand them or the actions I take. You may poke and prod and whisper to the world about why I would behave a certain way, but my motives are my own. I carefully choose them of my own free will and make my decisions based on what I believe is best. You don’t have to agree with them, but I don’t owe you answers on why I take a certain stance on issues. I articulate them clearly if I choose to do so.
I don’t owe you my time.
Days spent pouring over research and policy documents take time. Writing takes time. Airport delays and nights FaceTiming with The Kid when I would rather be snuggling with her take time. Sharing what I have learned takes time. Creating new ways to advocate take time. My time management is lousy these days, but I am saying right now that I don’t owe you an hour, a minute, or a second.
I don’t owe you my heart.
It bleeds, just like yours, but sometimes that’s forgotten as if I am supernaturally immune. Surprising twists of Brutus wielded daggers cause pain. It’s not black, hard as coal, many sizes too small, or missing. There are times I hold it in my hand, watch it beat, then hand it to others to stomp on or cherish. No one knows what’s inside of it. Sometimes, not even me, but it is not yours to steal or demand.
I don’t owe you anything.
But my community?
The people I advocate for, the men and women and children that must be counted and seen and heard and understood?
I owe them everything.
They give me hope, they give me support, they give me love that transcends blood. They give me purpose and strength.
I love my community.
I am forever in their debt and can never fully repay them although I will try for the rest of my days.
Sacrifice relationships, fun, career paths, life choices in order to get those medals. And you succeed. Over and over. You are the darling, the hero, the one destined for greatness.
You make a mistake.
An error in judgement. You are called out. Publicly. All that training is forgotten as you backpedal, trying to dig yourself out of a hole that is crumbling beneath your feet. You are not prepared and the next thing you know, you are at the bottom.
You are Lochted.
We compete in the Diabetes Olympics.
We train hard, seeking out coaches and help. We study others for techniques and new ways to get stronger, better, and more confident.
We have sacrificed much – career choices (I wanted to be an Air Force pilot), fun (“Let’s just sit while my blood glucose comes up.”), and life choices (“Yeah, so you need health insurance so you need to take this job you will most likely abhor.”), all to get that gold medal.
That “Great A1C!” or that “Your eyes look great!” gold medal that you can proudly show to the world. All those blood glucose checks, all those medications, all that money. Some compete against others (“My A1C was 4.9%. What’s yours?” ::blank stare::), while others compete against personal bests or even ghosts of heroes past. But we are all competing.
And sometimes we Lochte.
If you aren’t honest about your diabetes management, that mistake can blow up.
Whether we lie to ourselves or our medical team or our family, that simple mistake or omission can snowball. And you can’t flee the country. Diabetes comes with you.
I have learned that the truth will out – whether it be through lab results or irrefutable evidence (Like the fact I hadn’t asked my parents to order test strips in months as a teenager, yet told them that I was checking “every day.”) Saying that you are eating well and feeling fine when your physician presents you with your latest A1C and says: “Let’s talk about how this doesn’t match what you’re saying.”
Unlike Ryan Lochte, your diabetes management is not going to have an Olympic disaster attached to it. Your diabetes management does not have Speedo endorsing it. But he will be hard pressed to regain the public’s trust again.
By being honest and upfront about what’s going on with the people around you, even when you are exhausted and burned out, you can find support and help. (Where, you ask? Online, in person… there is a community of support. I can direct you if you’d like. Just email me at theperfectd [at] gmail.com.)
Take it from someone who Lochted a long time ago and spent time learning the hard way that being truthful about diabetes management is the best way to medal in the Diabetes Olympics… although in my case, I’m not going for the gold medal. My sights are higher than Gold.
Diabetes isn’t fun, but if you’re with the right people, it can be funny. Especially when sex is involved.
I had the honor of being on a panel with some smart, funny people. “Sex, Insulin, and Rock & Roll,” sponsored by Insulet on Friday night at the American Association of Diabetes Educators (AADE) annual convention in San Diego. We packed the house.
The audience was a glorious mélange of diabetes educators and people with diabetes. We were all there to explore how to have conversation about taboo subjects: sex, alcohol, body image, disordered eating, drugs, living real lives with diabetes.
I get to talk about taboo topics a lot with my tribe when we are at The Diabetes UnConference, but that’s private discussions amongst peers. It’s different when you’re sitting in a standing room only area (with apparently a long waiting list!) of mostly strangers. Thank goodness for the funny, smart people sitting next to me. And an extra thank goodness for the delicious beverages served.
Insulet took a huge risk by allowing us to answer questions from the audience and to talk without restriction. While they sent out a survey before the panel asking what CDEs and PWDs (people with diabetes) wanted to hear about, you never know what could happen.
And I don’t think we or the audience disappointed. Like a public announcement that the Insulet Omnipod has a new nickname, stolen from a comment by Amy Tenderich of DiabetesMine: #sexpump. Jim ran with it and suggested it become part of the new marketing campaign for Insulet. (Please expect some forward thinking CDEs to mention #sexpump to their patients, tongue in cheek.)
Sex and Diabetes
Sex was the first topic we tackled. Questions from the survey included how to feel sexy with a pump, intimacy where spontaneity can result in lows or highs, and dating disclosures. (But Anna won with her story of ripping off her Omnipod by accident during an intimate moment.)
Body image plays a huge part in intimacy. I shared that I don’t feel sexy with the bumps and lumps from years of injecting. (This elicited a “that’s so sad” from a CDE in the audience.) I said that’s OK, because I found a partner who appreciates the CGM and Omnipod attached to me . My husband is a sci-fi fan. I consider myself a cyborg these days, so I’m sexy Seven of Nine to him.
While there weren’t any specific questions posed beforehand, the survey showed that both CDEs and PWDs wanted to talk about disordered eating. As the only one with a history of diabulimia and disordered eating, I shared my story. It’s important for CDEs to talk with their patients about signs and symptoms of disordered eating. (Some of us just needed someone to ask…)
Disordered eating with diabetes isn’t just diabulimia (skipping shots) It can and does include anorexia, bingeing, orthorexia, and bulimia. It’s scary to broach the subject and some CDEs may not know where to start, which is why I mentioned great resources, including WeAreDiabetes, Diabulimia Helpline, and DiabetesSisters.
Why bring up drinking with diabetes with young (and older) patients? Because telling them “just don’t drink” is a waste of breath for most of us; learn to drink responsibly with diabetes is a much better discussion.
Glucagon, while lifesaving in most situations when a person with diabetes has a debilitating low, is pretty much useless when you’re imbibing alcohol. (Your liver is too busy with the alcohol to respond to the glucagon.) This means you can’t just carry a glucagon kit and expect that you’ll be fine. (That was my tip.)
Jim shared a cautionary tale. After a night of adult beverages, food, and a stubborn high blood sugar, he took a second insulin injection and headed to bed. He awoke to paramedics and an inability to say who he was or who his wife was. A simple error was almost deadly.
Nicole and I were the moms on the panel. Both of us shared experiences: hers with a pregnancy before CGMs were widely used and mine when diabetes was not the primary focus. I expressed a desire to have CDEs to share that women with diabetes can have healthy pregnancies and to work with their patients to get into that mindset.
I was told at Joslin when I was diagnosed that there was no reason why I couldn’t have a healthy baby, yet I hear women every day say they are told not to pursue motherhood because of diabetes. This shouldn’t happen.
A Thank You
We ran out of time, but not questions and certainly not laughter. These taboo topics need to be discussed and I hope that our panel provided some food for thought for the audience. I’m grateful for Insulet bringing us all together, the honesty of the panelists, and the questions asked by CDEs and PWDs. I hope that this is just the beginning of many…
(Disclosure: Insulet paid me to talk openly about my diabetes “life experiences,” although you know I’m not shy and often do so freely. I also wear an Omnipod; they do not sponsor me or pay me for that.)
No one would ever call me flighty or fickle when it comes to diabetes. I’m not often an early adopter (notable exceptions: Tresiba and Invokana.). I like what I like, even when it may not be in fashion. But I do like diabetes experiments.
While I have met people with diabetes who began insulin pump therapy in the 1980s, I didn’t get on that bandwagon until 1999 – and even then, I didn’t choose the most popular pump on the market. I’ve had three relationships with insulin pump manufacturers in seventeen years: Disetronic (RIP), Medtronic, and Asante (RIP)… and I’ve been pretty happy.
Over the past few months, I chose to embark on a few diabetes experiments. Experimenting is important, right?
Diabetes is really one big experiment.
My insulin pump break was impulsive, but most likely needed for my sanity. I love Tresiba and what it did for my overnight basals. What I didn’t love was the inability to hit my target range with MDI. I needed to take less than a 1/2 unit sometimes to bump it down into range and I couldn’t do that. My A1C crept up, as I expected it would. I went back to wearing my Asante Snap (yes, I still had supplies.). I felt like my experiment had failed.
And then summer. I wanted to wear bathing suits and pretty dresses and after years of stuffing my pump in my bra (awkward, because…) or in a thigh holder (also awkward), I went back to MDI. This time, I ate more just so that I could take whole units. A1C crept higher.
I even sampled some Afrezza, the insulin powder that can be inhaled. After about four days, I knew that I couldn’t do this on a daily basis. My throat was becoming raw. For some of my friends, it’s been a game changer; for me, while I love the idea, the reality is different.
It’s been six months of slack. And I know that I’m the only one who is responsible for ensuring I stay healthy so I can annoy The Kid and John in my old age.
I’m back on an insulin pump. A new one for me, although it’s not new in the market. And it’s hopefully the last of my experiments for a while.
It’s an Omnipod. And my Dexcom readings are stunning. (Not perfect, but 90% in range, so for me, that’s stunning.) It’s been a little over a week and I’m looking forward to trying new places that I normally couldn’t reach, like my lower back. The Kid is looking forward to pimping out more pods with her artistic creativity.
So, this is a new experiment, and one that I hope works for me until I get an AP that works for me.
It’s conference season and I’ve been traveling…. ADA in New Orleans, CWD in Orlando, AADE coming up in San Diego, with a trip to DC to speak at a Congressional briefing thrown in for good measure. Summer is always a happy time for me, as I get to see so many amazing advocates and learn from them.
I’m on the pump, off the pump (Tresiba), on an untethered regimen, adding inhaled insulin… I’m an experiment in the making. My blood glucose levels are not optimum for me as I switch around, but it’s summer and I’m more focused on quality of life than a single A1C.
There is so much welcome news on the Artificial Pancreas front! Bigfoot Biomedical is starting clinical trials. Betabionics is now working with a company with stable glucagon, pushing the dual hormone AP forward. Medtronic is closer to getting FDA approval for its newest AP version. TypeZero and Tandem are working together.
Dexcom G5 got a boost for the non-adjunctive label at the most recent FDA hearing. I know that many in the community don’t see this as a good thing. I’m of the mindset that each of us make our own choices on which tools are best for us to use, based on decisions made with our medical team. Some individuals have no issues with accuracy; others do. There is concern about how this will impact payers and reimbursements and approvals. I get all that. It’s always been an uphill battle to get the supplies we need, but for those on Medicare and heading into Medicare, this decision is important.
And then there is this:
I’ll be migrating over to a new hosting provider very soon. Everything should look the same (you shouldn’t notice much of a difference, I hope), but I have heart palpitations when I think about it.
So, there will be a brief spring summer cleaning to get rid of the dust and cobwebs and I will be back giving you a piece of my mind regularly. I’ve missed you…