Category: Musings

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? 

 

 

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. 

Stop.

It’s no surprise to those who know me or read this blog that I have fingers in a lot of (no carb!) pies these days. What started with this blog has blossomed into two non-profits, The Diabetes UnConference, policy advocacy, reviewing funding grant applications as a peer reviewer nationally and internationally, and attending/speaking at health conferences.

stop-sign-1420987-639x639This past month, I didn’t stop. Coming off the high of The Diabetes UnConference in Las Vegas, there was a short vacation with family (although John says that I really didn’t act like I was on vacation), then the launch of the DPAC #suspendbidding campaign and in the midst of it all, travel to the CWD Friends For Life conference in Falls Church, where Bennet and I unleashed the DPAC Diabetes Advocacy Boot Camp with some phenomenal guest speakers and calls to action. All good things. All important things.

Yes, I slept. Yes, I ate. Yes, I took time for myself. (Although in retrospect, reading a grant proposal with a highlighter in my hand while I got my hair cut doesn’t qualify as time for myself.) I was gearing up for a weekend conference that I not only wanted to attend, but had the privilege of helping to design as an advisor. On Thursday, I headed to Chicago, raring to go.

Off.

And I slept on the plane. Normally, once the flight attendant gives the signal that it’s OK to do so, I’m like a thoroughbred out of the starting gate, whipping the laptop out and working on projects and ideas while others watch cat videos. This time, while waiting to take off, I simply shut my eyes to meditate for a few minutes and the next thing I hear is the announcement that we were landing. That should have been my first clue.

Chit-chatting with the driver on the way to the hotel, I began to feel “off.” That “off” that you can’t really put your finger on, because you’ve done the mental checklist in your head:

  • Low blood sugar? Nope.
  • High blood sugar? Nope.
  • Food in your belly? Yep.
  • Could you be “real people” sick? Nope.
  • Hydrated? Yep.
  • Rested? Am I ever? But I just had a nap!
  • Is Venus in retrograde while you’re wearing itchy socks? Nope.

I assumed that it was a combination of getting off a plane and getting up early to get on that plane, but there was the little voice in the back of my head that said…  “Something else is going on.”

stop-1473017-639x772I checked into the hotel, intending to drop my bags and take a walk. That all changed when I opened the door to my room and a wave of exhaustion swept over me. Not a normal wave; a tsunami that scared me enough to text John and say: “I don’t know what’s wrong with me. What I am feeling isn’t normal. This is not normal exhaustion.” My smart husband told me to go eat lunch, then head upstairs and mediate for a few minutes.

A healthy lunch eaten and that meditation turned into a two and a half hour nap. I still felt tired. The next day, another long nap and still exhausted. When I asked friends why I might be like this (and saying that my blood sugars were in range and I wasn’t sick), the responses ranged from: “Could you be pregnant?” (Nopeity-nope-nope. The Kid will be an only child.) to “Have you checked ketones?” (Which was a smart idea and I didn’t have any.)

energy-1-1176465-640x512Everyone Should Know Rhonda.

And then I met Rhonda Waters. She’s part of the Johnson & Johnson Human Performance Institute, specializing in energy management. Not the kind of energy that keeps the physical lights on, but rather the energy that keeps the human lights on. During a reception at HealtheVoices16 (which I will share in a separate post as it deserves it!), I was introduced to her and joked: “Where were you yesterday when I needed you?”

I was trying to be funny, saying that I was tired and it wasn’t like me to feel like that. And she didn’t laugh, but rather talked to me about “forced recovery” which is what your body does when it’s void of  the mental, physical, emotional, and spiritual energy everyone needs.

I didn’t just listen. I heard and felt what she was saying. At that moment, I understood that if I kept depleting my energy, I was no good to myself, my family, my friends, and my community. The world will continue to spin without me attempting to direct its course.

At an energy break session on Saturday during HealtheVoices, a small group sat with Rhonda for what was supposed to be a quick 15 minute pick-me-up. An hour later (!), I left with words of wisdom from other advocates and Rhonda. My “ah-ha” for this conference was this:

“What would you say to a friend?”

Thunderbolt. And sadness.

What I would say to someone I cared about and what I had been telling myself were two very different things.

My question to you is this:

How do you know it’s time to stop before you get to “forced recovery” and what do YOU do to take time for yourself?

Right now (well, after this post) I’m reviewing my calendar and putting time in for me. And I’m going to stop removing those times that I had scheduled for me in favor of getting something else “more important” done.

I don’t want to stop. But sometimes, as I’ve learned this weekend, you have to stop before you can go.

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!