Now, it’s the month of open enrollment stress and the navigation of health insurance plans. For the third year in a row, I’ll be looking at the exchange plans and making spreadsheets and phone calls to determine what type of insurance option will be the best for me and my diabetes. (We are a package deal. Unfortunately.) It’s maddening and necessary.
I’m not saying that insurance is easier for anyone without diabetes. I just know that we have to look at formularies and deductibles and DME processes and MNIs and exclusions and….
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.