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Posts from the ‘Diabetes Advocacy’ Category

Recapping #dayofdiabetes.

My documented day of diabetes wasn’t an all-star showing.  I didn’t hit one out of the park, but it wasn’t a complete shut-out, either.  I’m no bush-league player, so I knew how to handle the things that kept coming out of left field, even when a diabetes triple-play was in effect (morning highs! then a few lows! then a pump site change at midnight!)  But there’s no cure on deck, so I keep swinging for the fences and taking it one base at a time.

The day started with a higher blood sugar than usual, which I found frustrating because overnight numbers are usually my stable-zone (of course there are outliers, but my A1C stays stable largely in part to having overnights reasonably nailed).  Kicking off the day with a little grumpiness isn’t my style, but that’s how it started yesterday:

Sometimes my blood sugars don’t respond quickly to insulin, and I have to kick start things with a little exercise.  Self-employment affords me a flexible schedule, which I’m very grateful for, letting me jump on the ellipmachine for a few minutes to help move the correction bolus into action.

But after the initial morning high, blood sugars were oddly low yesterday.  I spent more time than usual chomping on glucose tabs.

Low blood sugars didn’t just jack up my day.  They cramped my parenting style, too, as I waited for the glucose to hit my system and reboot my brain.

Work still needed to be done, though, so I found myself prepping for conference calls in an unusual way yesterday:

Family dinner was punctuated by the soundtrack of diabetes.

My bedtime routine was ambushed by the need for an insulin pump site change (which I despise doing before bed, due to the ambiguity of the pump site working properly, having a post-site change high blood sugar, [insert other variables here]).

But overall, the technology I use to keep track of my diabetes protects me more than it inconveniences me, and I’m grateful.

And then the day was done. Over! Today is another day. As is tomorrow.

“It’s like deja vu all over again!”

Another #dayofdiabetes.

Every day (at least for me, since 1986) has been a day of diabetes, but now there’s a hashtag to go with it, so I guess that’s cool?  (Yes, yes it is.)

Today, I’m documenting what a day in the life of this type 1 diabetic is like, one Tweet at a time.  If you’re on Twitter, you can follow the #dayofdiabetes hashtag to see a dozen different day-long perspectives on what life with diabetes includes.  And if you’d like to join in, you don’t have to limit yourself to Twitter.  Log your day on Facebook, in a blog post, on Instagram, or whatever online sharing model moves you.  Track using the #dayofdiabetes hashtag, and join the conversation!

 

If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.

 

Even Small Medical Advances Can Mean Big Jumps in Quality of Life.

I came home after two days away to a flurry of discussion about Sunday’s New York Times article, “Even Small Medical Advances Can Mean Big Jumps in Bills.”

My knee-jerk response was to be thrilled that type 1 diabetes received above-the-fold coverage in the New York Times.  Reading the profile of and quotes from Catherine Hayley felt like a fair assessment of life with type 1 diabetes, and painted Catherine not as someone who suffered from anything, but who worked hard to power through a whole lot.  I wished the columnist had been more focused in her discussion (Is this article about health system economics?  The cost of treating type 1 diabetes?  The complications associated with diabetes as a whole?) but I am not the best person to discuss a lack of focus because … (shiny thing)

That said, the quote that really bothered me was right at the beginning:

“But as diabetics live longer, healthier lives and worries fade about dreaded complications like heart attacks, kidney failure, amputations and blindness, they have been replaced by another preoccupation: soaring treatment costs.”

Really?  It’s that simple?  I wish I was being dramatic, but every, single night before I go to sleep, I think about whether or not I’ll wake up in the morning.  It’s not a thought I belabor, and at this point, I sometimes debate the possibility almost pragmatically, calculating insulin on board and exercise I’ve done recently, thinking about my last A1C or EKG, thinking about how 27+ years of type 1 diabetes has affected my body.

I wish financial worries were replacing others, but instead, I worry about diabetes-related complications in addition to cost of treatment.  However, the trick is that these advanced treatments will allow me to worry about diabetes into proper old age, because I will live longer, and better, with access to this technology.

Devices like an insulin pump, which can precision dose my insulin and help efficiently calculate and track insulin use throughout the day, help me fall asleep with more peace of mind.  Wearing a Dexcom, which alarms when my blood sugars falls out of my pre-established comfort zone, helps me fall asleep with more peace of mind.  Peace of mind, when living with a complicated chronic illness, matters.  These are not devices I wear because they’re “cool” or “fun.”  I don’t care what colors they come in or whether or not they resemble an iAnything – I want it to work and work well.  I turn to technology to help best manage my diabetes because my pancreas stopped making insulin almost three decades ago, and these advances in treatment have improved my quality of life immeasurably in some ways (emotional health) and very measurably in others (better blood sugar control).

One other quote was particularly frustrating, not because it was the study that was referenced, but because the study itself is over 20 years old:

“But that all changed after a landmark study in 1992 showed that patients did better if they maintained very tight control — keeping their blood sugar within a nearly normal range by checking it frequently and taking multiple insulin shots a day.”

Where is today’s modern DCCT?  Where is the study that’s looking at the influence of insulin pumps, CGM, and insulin analogs on patient outcomes?  (Please tell me this study exists – I hope it does!)  We’re talking about modern-day diabetes treatments and lining these discussions with studies involving somewhat out-dated treatments.  I’ve seen the benefits of pumping and CGM use on my personal diabetes management, and I can only hope that the overall PWD population sees positive outcomes in their management when given access to these technologies.

The discussion I’ve seen across the DOC and the web at-large has been enlightening, and I’m really glad to see and hear people talking about diabetes with such excitement and passion.  Diverse opinions should be shared, and heard.  Progress is important.  Innovation matters.  And in my opinion, modern-day diabetes should be treated with modern-day technologies.

 


 

[hi, there are my disclosures]

 

 

What’s Your Itch?

My “diabetes advocacy itch” has always been emotional health.  I’m not a doctor and I don’t know everything about type 1 diabetes, but I do know that I pay more attention to my diabetes when my head is in a healthy space, and being tuned in to diabetes improves outcomes, for me.  Feeling stressed, overwhelmed, upset … any kind of intense emotion like that seeds itself in my management attempts and upsets the apple cart.  (Or, to be more accurate, the islet cart, which is already a precarious one.)

I can have the most up-to-date, tech-savvy glucose meter on my bedside table, but I still need to motivate myself to load the test strip, apply the blood drop, and make decisions on the result.  I can have access to the best medical team in the country, but I still need to follow through on the appointments that are scheduled.  All the diabetes management tools in the world are rendered useless if I don’t use them.

Which is why the psychosocial side of diabetes interests me so much, because I feel that mindset can be as important as access.

(I realize that it is a privilege to have access in the first place – see how it comes back to mindset?  During the Spare a Rose campaign, I was repeatedly reminded to appreciate the insulin sitting in my butter compartment, which made me want to move the Life for a Child mission forward even more.  :: scratch, scratch ::)

Since the start of my blog back in 2005, I’ve seen people in the DOC space tackle a host of issues, because it was their “itch.”  Some people make their focus the FDA, or research, or fundraising for different organizations.  Some people want to move the needle on access to care, or exercise, or peer-to-peer support. Some people want to connect with PWD in their town, or have a network to discuss emotional issues with.  Others want to tackle public perception, or offline outreach, or influencing policy.  Just like the variables of diabetes, the advocacy and connection possibilities are endless.

Lots of different “itches.”

Every single aim is important.  Every voice is important.  Every person touched by diabetes is important.

So I want to know what your “itch” is.  What fuels you?  What diabetes issues are important to you?  We’re a huge community with the ability to do a lot of good, and it starts with knowing what you want to see “scratched.”  Maybe by sharing, we can find kindred spirits and get scratching.

All the Pieces.

We took a brief break at the Boston Museum of Science to marvel at the “Archimedean Excogitation,’’ an audiokinetic sculpture by George Rhoads.

Birdy stood and stared at it for ages, and I found myself doing the same.

The sculpture is 27 feet tall, made up of a xylophone, wind chimes, and so many chutes and pulleys and moving parts that whirred and influenced one another, sending billiard balls on a journey through the sculpture, rarely taking a predictable path and creating this cacophonous yet controlled chaos that made focusing on one part dizzying but watching it in motion made me respect all the work that went into crafting and maintaining it.

Diabetes management metaphor, anyone?

 

The Friday Six: FDA, Competitive Bidding, and Double-Dutch.

The weekend is SO CLOSE.  I’m wearing a path through this busy Friday with a Friday Six:

The FDA is listening, and if you want them to hear from you, you can join the discussion on Monday.  “Whether you want to just listen to the interview to get informed, ask relevant questions to better understand the medical device regulatory process or just speak your mind on the newest draft guidance document … you should join in the conversation.”  Join the FDA and the DOC for a discussion about glucose meters and test strips on Monday, March 31st.  You need to register to join this discussion, and you can do that here.

“We in the diabetes community need to speak out to argue that a. insulin pumps should be removed from competitive bidding and b. that if they remain in the competitive bidding program, CMS must use a different process to determine reimbursement rates, so that cost-saving does not stifle innovation.”  Catherine Price at A Sweet Life has a great post on the efforts to stop competitive bidding for insulin pumps, with simple instructions on how to raise your voice.  CMS is encouraging public comments, but the deadline to submit a comment is TODAY.  Read Catherine’s post for the how, and raise your voice here.

Yes, I’d very much like to consciously uncouple from diabetes.

Just add water.

A little March Madness, insulin-style … (refraining from making any “Sweet 16″ jokes because it’s too damn easy.)

This is mesmerizing.

So is this:

Low blood sugar as told by kitties?  OH HELL YES.

When they fight in the double-dutch machine, I lose it every time.

Making the most of your medical appointments?  Diabetes Forecast has some tips.

The permanence of performance.

The JDRF chapter in Boston is holding its masquerade ball to “unmask a cure” in a few weeks, and Briley has a great post on why it’s worth the price of admission.

Interested in supporting some fellow PWDs?  Check out this Novo Nordisk Tweet for details.

Diabetes is so gay.

Weekend. Bring it.

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