by Christel -

Sex, Insulin, and Rock & Roll – with Strangers

Jim Turner, Christel Marchand Aprigliano, Anna Simos, and Nicole Johnson (l. to r.)
Jim Turner, Christel Marchand Aprigliano, Anna Simos, and Nicole Johnson (l. to r.)

Diabetes isn’t fun, but if you’re with the right people, it can be funny. Especially when sex is involved.

Wait…what?

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.

Who were those smart, funny people? Jim Turner, Anna Simos, and Nicole Johnson.

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.

#Sexpump

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.

Disordered Eating

The packed audience.
The packed audience.

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.

Alcohol

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.

Pregnancy

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.) 

by Christel -

Experiments with Diabetes

ExperimentsNo 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.

New Experiments

omnipod by ThePerfectDI’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.

Have you tried anything new this summer?

by Christel -

How is Milk Like Insulin Pumps?

Meet Bessie.

cow-3-1545957-640x480

She’s a cow. She produces milk that her farmer sells to a large dairy so that people can drink it.

But not everyone likes milk produced by Bessie.

Other farmers offered different cows:

 

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This cow (I’ve named her Daisy.) only eats organic grass.

She produces a different milk that her farmer also sells to a large dairy.

But other farmers, smaller farmers, offer milk… not from cows.

They offer milk from almond trees. (I’m not naming this tree. That’s all on you.)

They offer milk made from soybeans. (His name is Bob.)

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And so everyone who wanted to drink milk could choose what type of milk they wanted:

  • milk from Bessie, or
  • milk from Daisy, or
  • milk from Bob or…
  • milk from the unnamed almond tree that you’ve named in your head, because you feel bad.

Some farmers couldn’t compete in the production of milk. They shuttered the barn doors. But other farmers continue to work on making their milk better and healthier, giving alternatives if one type of milk isn’t the best choice.

Most of that milk goes through dairies (Yes, I know that soy milk doesn’t go to a dairy. Work with me.) and we get that milk by paying dairies. Some dairies offer lots of choices; other dairies only carry one type of milk.

We pay them, we get milk. Sometimes we pay more, depending on what dairy program we use.

The dairies contract with the farmers to get the best price on milk.

One day, one of the largest dairies decide that they are not going to offer almond or soy or even organic milk to its customers.

Monopoly Milk

milk-container-1507753-639x852They have been talking with Bessie’s farmer and negotiated a deal to get a better price to save money. Part of the agreement is exclusivity. For the farmer, who is a business that gets paid by the dairy (and not those of us who drink milk), it’s a great proposition.

For those who drink milk from that dairy, you get Bessie milk or no milk at all.

Sure, you can go to another dairy, but some people can’t change dairies. They’re stuck. Who is angry?

  • The other farmers are angry. (They just aren’t large enough to be able to offer exclusivity because they have small farms.)
  • The customers of the dairy are angry. (What if you tried Bessie’s milk and it didn’t make you healthier, but Bob’s milk did?)
  • Friends of the customers of the dairy are angry. (They still get to choose milk from Daisy.)

Now, some of us like Bessie’s milk. And the farmer. Some of us don’t. Bessie isn’t for everyone and that’s OK.

Who Gets Poked By A Pitchfork Over Milk?

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There’s a lot of anger and sharpening of pitchforks. But here’s the question. Who should you poke?

  • Should you poke the farmer because they are the largest and produce the most milk and offered a great financial incentive to the dairy? The dairy didn’t have to take the offer.
  • Should you poke the government, as some suggest? Would it help?

If you want to raise the pitchfork and poke at anything, direct your anger to the dairy. The dairy chose to stop selling different types of milk. The dairy is a business that is paid by customers and serve as the middleman between the farmers and the drinkers of milk. They did not have to sign an agreement that was offered. Customers can complain, but they need to complain to the right business: the dairy.

The dairy is the only entity that can give back the milk choices.  And the community should be the ones to get the dairy to give back the milk choices. Expend the effort on the dairy.

Now… some people who want milk can’t get any at all. Some dairies tell customers that they can’t have milk or they can’t afford the milk offered. And some customer don’t have dairies in their country. That is recognized. That’s another pitchfork rally, just not for today. Today, it’s about the choice of milk being taken away from paying customers. 

And If You’re Still Wondering How Milk Is Like Insulin Pumps?  

Hint: This is not about milk.

This is about access to different types of milk.

I like milk. All kinds of milk. I want to keep more than one farmer in business.

I like insulin pumps. I have used a few of them.

Milk = insulin pump in this post.

Let’s not cry over the spilled milk. Let’s make sure that there is more types of milk available to the community.
 

 

 

by Christel -

Crashing The Diabetes Bike

bicycle-1515716-640x480I’m about five days into my MDI adventure (Tresiba and Novolog flex pens) and well… from the title, you can guess how it’s going.

It’s a little bumpy.

It’s not Tresiba’s fault. Or Novolog’s fault.  The flex pens are amazing (once I learned how to use them!) and throwing them into my purse along with the rest of my gear is simple.

It’s having to learn how to be a person with diabetes all over again in a more “traditional” sense. Not that I was sloppy, but I would casually bolus for meals and figure if I saw a rapid rise, I could dose a teensy bit to bring it back down within range. I would guess at carb counts, figuring I could always adjust later. Adding Invokana to the mix means that my carb ratios and correction ratios are also a little off kilter.

And the math. Oh, the math. I forgot about diabetes word problems:

If Christel’s fasting blood glucose level is 164 because she bottomed out last night and the cortisol is still hanging around in her system and she wants to drink a cup of coffee with half and half now and scarf down an English muffin (double fiber!) with peanut butter before she goes running at the gym an hour later, how much should she bolus?

(If you know the answer, please let me know, because I have yet to solve it correctly.)

I’m pulling packages out of the garbage to get the carb counts. I’m eyeballing fruit. I’m eating more protein because it’s less of a headache. And yet, my CGM graph still looks ugly.

Here’s the rub: One unit of insulin means a lot to my body. It loves it these days. So much so that if I inject one unit to correct a BG outside of my comfort zone, I can send myself into a severe hypo. Which I did this weekend. Flex pens are only for one unit dosing (or two unit dosing). Yes, you can purchase cartridges for a half-dosing device, which I may look into doing next month if this continues.

The second rub: From my years of pumping, I know that my afternoons are when I need less of a basal. Crash. I will be decreasing my basal Tresiba dosage to counteract the crashing. We’ll see.

Why am I doing this?

Normally, when it’s time to eat, I reach down while glancing between my CGM and my meal and bolus. These days, I head off with my phone (mySugr is awesome if you are doing a MDI regimen. Seriously. No better way to track injections and food and times and BGs!) to check my BG by fingerstick, think about what I’m going to be eating, calculating if I still have insulin on board and how many carbs I’ll be eating. Then twist that pen, inject, and dispose of the needle in a sharps container. It’s not 30 seconds…

John asked me why I was really taking a break when we were eating dinner last night.

I think I’m doing this for a few reasons: 1) I really need a break. 2) I need to know if something does go wrong with my pump that I can handle MDI and know what my dosages should be. 3) It’s teaching me to be mindful of what I am eating and doing. It’s teaching me what it means to have diabetes again.

I may explore the amazing Dr. Steve Edleman’s “untethered regimen,” which for me would mean I would continue to take Tresiba (which I do like very much, for when I do get it right…. my BG levels are beautifully stable) and then only put the pump on to bolus. (This would allow me to do those 0.4 correction boluses that I simply can’t do right now with the flex pen.)

I’m still riding the diabetes bike. Crashing is inevitable when you’re learning to ride again.

Words of wisdom, anyone?

 

 

by Christel -

Taking a Diabetes Break with Tresiba

unnamed-2It’s happening for the first time in seventeen years.

I’ve decided to take a break from my insulin pump.

Granted, we’re not breaking up permanently. I’m just going to see other insulin regimens for a little while.

I need a break.

After a “naked” shower earlier this week, which always leaves me feeling elated and extra clean (no worries about scrubbing and ripping an insertion set off), I wrapped myself in a towel and glanced over at the counter where the next round of “Who wants to play a pancreas?” waited to be inserted.

And I just couldn’t do it. 

The thoughts shot quickly and unexpectedly through my brain:

  • “How much longer will I need to do this?”
  • “I don’t know how much longer I can do this.”
  • “I don’t want to do this.”
  • “Nope. Not doing this.”

And then I walked away.

Diabetes isn’t a part-time gig. We all know that. I can’t just not show up and expect to live much longer, so when I walked away after that little internal hissy-fit, reality set in and more productive thoughts trickled through:

  • “So, what can I do to change the way I’m feeling about putting another insertion set in?”
  • “What are my other options?”

Seventeen years with insulin pump therapy have produced some of the best control I’ve ever had. It’s also been a pain in [insert body parts]. Always attached, always “almost” in the way. I have found that I hug my daughter differently based on where my infusion set is placed and where my pump is on my body.

I love my pump, but I need a break.

Tresiba

Nothing this major should be decided alone, although in the end, it’s me that gets to decide. My hissy-fit included a frantic text to my husband, telling him that I was going off the pump “right now!!!” and I was going to pick up a prescription of Tresiba. I had discussed it with my CDE a few weeks ago and we switched my “back up” insulin to it. (I have come close, but never had to use my back up insulin.)

Fortunately, one of us (hint: not me) is much more logical and rational. He reminded me that this was a major change and that he’d prefer to be around when I began the therapy change “just in case.” While I wear a CGM and mostly react to the alarms, I’m either home alone or just with the Kid most of the day. We agreed that I would wait until today to take a break.

Decision made, I put on my big girl pants (after all, I was still in a towel) and inserted my CGM sensor and my infusion set. Just to spite me, neither one hurt a bit or bled.

nph-1I have only used an insulin pen twice in my life. I had to read and re-read the instructions to make sure that I was doing it right. I instinctively rolled the pen in my hand to make sure it was mixed. (NPH, anyone?) Old habits die hard.

I just took my first injection of long-acting insulin in seventeen years. 

New adventure. New medications. New challenges.

But a break all the same. Wish me luck!