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?

If you’re looking for ThePerfectD – here I am

Blowing off The Dust…

picture-frame-ii-5-1548047-640x480I just ran a finger over this blog and dust flew everywhere.

Sorry.

It’s not that life with diabetes has stopped and I have nothing to talk about; exactly the opposite.

The Diabetes UnConference is coming up in Atlantic City from September 9 – 11, 2016.

DPAC (Diabetes Patient Advocacy Coalition) has new actions and a lot of measurable successes and some important issues coming up.

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.

vaporizer-1427429-639x852So, 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…

 

 

 

And What Am I Doing In This Hand Basket? #dblogweek

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Today’s topic: What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

A little backstory: When I was at university and living in the dorm, this was tacked on my door.

Basket

 

There are days when I feel like we are all going to hell in a hand basket if we don’t stick together. Diabetes can be fatal, debilitating, and maddening. It has also brought me some of the best friends I could have ever asked for and a tribe of like-minded people.

So, my message is this: Diabetes can suck. Hard. But when you reach out and share the realities of living day-to-day with it, you find that others not only have the same experiences, but they may have insight on how to make it suck less. And as you learn to make it suck less, you find ways to raise your voice and share how it could suck less with people outside of the tribe… like policy makers.

I want to make diabetes suck less. And be real about it. And take action.

Here is how I try to make diabetes suck less: 

The Diabetes UnConference (This is where you can find your tribe and love them hard.)

Diabetes Patient Advocacy Coalition (You can make diabetes suck less for over 29 million of your tribe – including you, by taking action.)

And if I’m going to wonder what I am doing in this hand basket,

at least we will all be wondering together. 

 

 

Shout out to the amazing Karen Graffeo of Bittersweet Diabetes fame for creating this annual event (7 years running!). It’s wonderful to read so many posts and discover new blogs and new voices.

 

#DiabetesAccessMatters – Share Your Story

Tell it.Now.-2Everyone has a story to tell.

Our lives are a collection of stories. Some are silly and happy, others filled with heartbreak and sorrow, and some flow with frustration and anger. These stories may be short and sweet or long with plot twists and abrupt endings. Whether we share them or not, we have stories to tell.

For people impacted by diabetes, we have stories that resonate within our community. Stories of hypoglycemic reactions or DKA, mentors and supporters in our healthcare system, and stories of access to the technology, drugs, and care that keeps us alive.

We want the diabetes access stories, because they matter.

By we, I mean the diabetes community. Last week, diaTribe’s Adam Brown and Kelly Close gathered a group of individual advocates and diabetes advocacy organizations on a call, prompted by the recent decision by United Health Care to restrict access of insulin pumps for adult members. While the conversation began with the decision, it quickly became a discussion about overall access… not just insulin pumps.

And from that call, it’s clear that while we all have access stories, there was not one place to house them all. We needed that, so Diabetes Patient Advocacy Coalition has stepped up to collect our stories to share with the public, including the healthcare community and policy makers. By providing these stories, we can build a plan to connect patient access issues and solutions that include our community. (I’m a big fan of “nothing about us without us” and having a seat at every table that makes decisions about our community.) 

Why #DiabetesAccessMatters NOW?

I’ve seen comments in the community that range from: “I’ve been talking about restrictive access to diabetes supplies for years and no one seems to listen!” to “Why did insulin pumps get people screaming and not meters or insulin?”

Here’s my take:

  • If you are one advocate or one organization, you’re not going to make much noise. Sorry to burst that bubble, but hell, I know this first hand. It takes a united front across several diabetes organizations and several advocates to impact change. There just hasn’t been that unified commitment groundswell until now.
  • It’s always been about access. We individually mount campaigns within our individual insurance plans for overrides on the amount of strips. We individually ask our healthcare team to appeal a decision on the type of insulin insurance will cover. We individually spend hours, days, months building cases for Medicare coverage for CGM. We have the tools and technology now to build a unified front.
  • The tipping point was insulin pumps, but the issue is access. It could have been meters or insulin or any aspect of treatment. Perhaps it should have been something else (we’ve tried in the past to raise the access alarm), but we’ve morphed quickly from #MyPumpMyChoice to #DiabetesAccessMatters because it’s about more than insulin pumps.

Why is DPAC Collecting The Stories?

NYC-2Because DPAC represents all individuals impacted by diabetes: Type 1, Type 2, MODY, Gestational and families of people with diabetes.

We work with ALL diabetes organizations that may specialize in one or two types of diabetes (i.e. JDRF is a wonderful organization, but they represent only Type 1 PWD.), to amplify the voice of the patient. The diaTribe Foundation is a 501(c)(3) and cannot use the stories for lobbying policymakers; DPAC can. (DPAC is a 501(c)(4) non-profit and the big difference is political lobbying.)

But the stories are for all organizations and advocates to use.

Your story will be shared across the community.

Your story will be used to show the frustrations and roadblocks to access and choice.

Your story becomes part of the larger story we share with insurance companies and policymakers.

Your story is worth telling.

Because everyone has a story to tell.

Tell yours.