The Highland Cow Edition

Hi. I know. I know. Been a while.

I’m still here. By here, I mean on Earth. The last few months have been mind-bending, outrageous, quiet, loud, and contemplative – not in any particular order. My focus hasn’t been on writing. It’s been elsewhere, but I thought you might like a picture of a highland cow in all of its shaggy goodness and maybe hear from me.

Diabetes

I still have diabetes. (I understand that this may be shocking to some of you.) It’s still doing its thing and I’m still doing mine. Sometimes it’s a wonderful waltz of stable blood sugars and other times an awkward dip when I least expect it leads to a frightening tango where I lose my step.

I forget how to dance with this disease some days and it’s frustrating. You’ve been there, though, haven’t you?

Healthcare

I am still scared about the future of my health care. And those of every.single.person with diabetes in the United States who stands to lose protections due to bad genes. I read policy articles every morning and go from angry to distraught to outright “this is crazy-town-banana-pants” (this is a phrase uttered often in my house, courtesy of The Kid and John). I don’t have to pay to ride a roller coaster; I just have to read the latest news about ACA.

I channel those feelings into action through DPAC and ways that I can make a difference. I have met with Congressional staff, spoken with other organizations, and am looking forward to a few positive steps forward to protecting all of us with pre-existing conditions.

Silly Rabbit – Or Highland Cow…

I even asked friends if they wanted to participate in a March for Health that has grown into a group of amazing advocates who, on April 1, will speak up in cities around the country. But silly rabbit, you can’t do it… because something non-diabetes related is going on and I had to step back.

I ignored some health flags until I couldn’t ignore them anymore, so I’m waiting to hear back on bloodwork and diagnostics. It’s slowed my roll, so I’m stuck on the sidelines wondering when I can resume my rabble-rousing ways. When it comes to diabetes issues, I’m all “take it in stride,” but when it’s not diabetes, I feel helpless. (And the stories I could tell about trying to get an ultrasound scheduled would make you laugh… and cry.)

But Good Things!

I’m spending time with my favorite goofballs.

I just came back from our FOURTH Diabetes UnConference and we announced our fifth (October 13-15, 2017 in Alexandria, VA, y’all) which will be co-located with DiabetesSisters’ Weekend for Women conference.

DPAC will be part of Children With Diabetes Friends for Life in Anaheim, Orlando, and Falls Church, helping spread the goodness of advocacy. I love what CWD does and thrilled that DPAC can be involved.

And… there’s more, but my lips are sealed at this time. Good things! Happy things!

So, I’m here. Still here. Still have things to say but just not a lot of time to say them. And that’s OK, right?

 

Being Scared…

I’ve been busy being scared.

Not the hide-under-the-covers scared. The whisper-quietly-but-keep-moving scared.

Last month, the life for many people in the United States was upended in a stunning, still jaw-dropping election. Since November 8th, I’ve talked with friends, colleagues, people in healthcare, policy makers, and the feeling I get when those conversations end is this:

Fear

Fear of the unknown.

What the Affordable Care Act has given to those who were previously uninsurable through individual plans, those who will exceed “lifetime caps” for health care expenditures… while we’ve been told that the new administration does not want to take those provisions of ACA away, we don’t know anymore.

Fear of the known.

The access to medications, devices, and services that people need to stay healthy are being restricted or priced artificially.

I’ve sat in meetings this year talking about insulin and competitive bidding for glucose test strips and all of it is complex. No easy solutions. In the end, patients suffer.

Fear for the options.

I purchase my health care plan through the Exchange, made possible by the ACA. While I do not get a tax subsidy (I don’t qualify because John’s employment could provide coverage for me, even though his plan is horrifically bad.), I do get to select a plan based on my needs. Each year, the premium has gone up, but I’ve been willing to pay it because I can’t be without it. This will most likely be the last year I will be able to do so if the new administration and Congress have their way.

And they most likely will.

The expectation is ACA will be repealed. I’ve been scouring the news and policy wonk blogs to learn what could happen, building scenarios that end often with… coverage will no longer be accessible as we know it. And we don’t know what will happen if it’s replaced…

If. It’s. Replaced. 

My Biggest Fear

So, I’ve been a little busy being scared, which is why I’ve been quiet. My policy advocacy work has brought me to anger, to tears, and to the people who need those with voices to speak up. That’s where my focus has been.

I wonder if I help at all or if I’m shouting into the void. 29 million American families impacted by diabetes and yet only a fraction of a percentage actually speak to policy makers through the various diabetes organizations that promote policy advocacy.

If we don’t speak up, we stand to lose more than ACA coverage, more than access to the things that keep us healthy. That is what scares me most. Our own community doesn’t seem to think it’s important enough to talk about – except on social media, where the complaints pile up in silos of like-minded people.  We will happily post pictures and spout off about diabetes awareness month and how important it is, but our friends are the ones who see these posts and tweets – not policy makers.

Moving Forward Scared

But I’m not pulling the covers over my head. I’m scared, but I’m moving forward. Diabetes, if nothing else, forces all of us to keep moving forward. The question becomes….

What are we moving forward to? 

 

 

Friday, October 7th at 12pm Eastern: Diabetes & Insurance

Insurance? November used to be the month of crisp air and Thanksgiving. (And decorative gourd season. NSFW.)

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….

You’re getting the picture.

Health Insurance and Diabetes

Over at DPAC (Diabetes Patient Advocacy Coalition), there will be a FREE online presentation with Dr. Edmund Pezalla, MD, MPH about diabetes and commercial insurance plans. He’s former VP of Pharmaceutical Policy and Strategy in the Office of the Chief Medical Officer at Aetna, so you know he knows what he’s talking about.

Register here for the presentation.

You can attend live – or you can still register and a copy of the recorded webinar will be sent after it’s archived.

If you don’t know what to watch out for… you might end up paying way more than you should. And no one wants that, right? Especially when there are gourds to be decorated!

 

The Lochte of The Diabetes Olympics

You train hard.

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.

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.”

Don’t Lochte

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.

I’m training for the Joslin Medal. 

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.)