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Posts tagged ‘JDRF’

DBlogWeek 2017: The Cost of Chronic Illness.

Diabetes Blog Week prompt for Tuesday:  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

Aaaaaaarrgggghhhhhh this post has me writing and erasing sentences left and right.  I’m not even sure where to start.  This whole topic frustrates me.  Best to jump right in:

I remember, when I was small and under my parents’ care, my parents had to battle with their insurance company to cover more than four blood glucose test strips per day for me.  Since becoming an adult, I’ve had good insurance where my deductible was $300, out of pocket max was $500, and all of my supplies were covered at 100% so long as I was “in network.”  I’ve had crappy insurance where my deductible was $5000, no out of pocket max, and my pump supplies were covered 80/20.  (Those two years were the most I’ve ever spent on care in my life.) I’ve never been without insurance because I was raised fearing a lapse in coverage.  When I graduated college, I had a job that started three days later so that I wouldn’t have a coverage gap.  I remember when Chris and I were first married, we struggled to find an insurance policy to cover the two of us in a way that we could afford while also providing decent coverage for my persistent medical needs.

Living without insurance coverage was always presented as a “DO NOT,” but as the years have gone on and greed, corruption, and the breakdown of the healthcare (wealthcare) system became dominant over caring for patients, I’ve seen how being insured can still break your finances apart.  Families struggle to make medical ends meet and oftentimes can’t, making awful decisions – if you can even call them that – between paying rent and buying medication.

I am not a conspiracy theorist.  But what the fuck, Pharma … why are you always raising prices on essential drugs?  Because you know we’re trapped?  Why did insulin cost like $45 per bottle when I was diagnosed but is now upwards of $280?  I can only understand so much R&D because after a while, it starts to read like GREED.

Reading articles like these give me such rage (with a side of panic):

Insulin price hikes tell us a lot about what’s wrong with drug pricing in America

Eli Lilly Raises Insulin Prices While ‘Supporting’ People With Diabetes

On Lilly’s unconscionable insulin price increase

Doubt what they say. Believe what they do.

Eli Lilly raised prices on 9 drugs last week

Patients Beg For Pricey Drugs On Facebook Black Market

And I see a dozen different advocacy groups working towards the same goals – improving access for people with diabetes – but they aren’t always working together, which is infuriating to watch.  (Also, Melissa Lee wrote a great note on Facebook about the word “access” – read here.)  I do not know the behind-the-scenes details of which org is talking to who and what funds what and who has opinions on what sort of things, mostly because I’ve been out of the loop for the better part of a year (something about an infant invading my home), but looking at the community from 10,000 feet, there are a lot of dots.  And they could use some connecting.  And to be totally honest, I have no idea how that will happen.

Check out these orgs/efforts/opportunities and see if anything leaps out at you.

Check out the T1International Diabetes Access Advocacy Toolkit

Join the Access Alliance

Join the Diabetes Patient Advocacy Coalition

Download the Diabetes Patient Advocacy Coalition app

Take action with the American Diabetes Organization

Support JDRF advocacy campaigns

Explore Beyond Type 1’s Focus on Access

International Diabetes Federation’s Advocacy resources

The 5Calls.org website is always awesome for policy action (not just healthcare)

Because here’s the thing:  our community is divided by a dozen different things but we are UNITED by our common circumstance:  diabetes.  By uniting and raising our voices with compassion and conviction, we can make the difference and become the change our community deserves.  The cost of chronic illness is staggering, but the price of staying silent will make matters worse.

… and how great is Diabetes Blog Week, serving as the opportunity you may have been waiting for to get loud.

 

Keeping it Bubbly Without Bubbling Over.

Yesterday, I was at the JDRF TypeOneNation event in Dallas (big thank you to Tandem Diabetes for sponsoring my attendance in full – more on that disclosure here), and I did two presentations.

Despite only seeing a circuit of airport/shuttle/hotel/shuttle/airport, Dallas was fun.

During my talk on “Life After Diagnosis,” a family asked about my views on diabetes, citing that I seemed to have a lot of energy.  (Little do they know that coffee is to blame.  A real one; my first in several months.  And it was lovely and made my brain go hey I still work – jump up and doooooown!)

“You seem very bubbly, and very positive about your diabetes. My daughter hears a lot about people who are very positive and upbeat about their diabetes. She is not there yet. How can we help her get there?”

That’s a loaded question, because it runs on the assumption that once you hit a moment of diabetes acceptance, you stay there. This September, I’ll mark the 30 year point with type 1 diabetes, and I’ve had more than a few run-ins with diabetes burnout, episodes of less-than-optimal, and emotional struggles with diabetes. Sometimes that’s not properly conveyed here on my website, and less-so in person, because I don’t like to write about struggling too often. It’s not a matter of being ashamed of the struggle, but more that chronicling emotional stress sometimes adds to emotional stress.

Think about it: if you’re feeling crumbs-ish about diabetes, and you make a list of reasons why you feel crumby about diabetes, now you have this list of crumbs-inducing stuff staring you in the face. A bulleted list of reasons you should feel like garbage.  That kind of reinforcement is not my jam.

For me, itemizing my grief doesn’t work. What does, at least for now, is identifying what’s bugging me and then embracing the opposite of that bug.  In the past, I’ve actively hated the process of checking my blood sugar.  Oddly enough, a new meter case was enough to trick my brain into being less frigging angry about it.  When my blood sugars were tanking after exercising and frustrations were mounting, my husband helped me focus on the benefits of the exercise itself, even if I was consuming a juice box (or four) after a specific workout.  Focusing on small victories made dealing with some of the bigger bullshit moments easier.

And sometimes I’ve just needed time to fill back up.

Diabetes “acceptance” isn’t a staircase, where you achieve a mental milestone and continue to work from that point. If anything, the emotional aspects of diabetes are more like an escalator that sometimes stalls out and becomes stairs, which then sometimes collapse entirely to become a slide backwards. I’m not sure what’s at the top, what the apex of acceptance might be for other people, but for me, I picture it as feeling comfortable taking a few steps forward at times, knowing full well I might stumble back.

The point is, there’s always something.  People aren’t always honest about what they’re struggling with, which can paint a perception of achievable diabetes perfection, which is absolutely not a thing.  I’m not sure how to advise someone to “get there,” but instead assure them that “there” looks different for everyone touched by diabetes.  Community, and connecting with others who understand on the most nuanced of levels, helps.   Diabetes is a journey.  It’s a pain in the butt.  It’s a constantly needy little thing that shouts often and loudly at times, whispers quietly and pokes me with an unraveled paper clip at others.

But at the end of the day, diabetes is ours to wrangle in, and on our worst days, the diabetes community helps us to hog-tie that shit.

(Also picturing comfortable pillows and one extremely fluffy and endearingly cross-eyed/double-pawed kitten at the top of this staircase, and maybe a giant iced coffee that I can stick my whole face into and then sprout gills to be able to breathe under coffee.  To be specific.)

One More Sneaker.

This week, in my quest to become a Lady of Suburbia, I went to Marshall’s to pick up a lamp.  (I also bought pumpkin coffee beans.  Whilst wearing yoga pants yet not doing yoga.  In the middle of the day.  Forgive me.)

This visit was on the same day that I was sharing a #dayofdiabetes (peek in on the hashtag here), so diabetes was a documented focus.

The cashier was a nice lady who wanted to chat.  As she was ringing my purchases up, we both overheard the cashier next to her ask a patron if they’d like to donate to the JDRF.  “No, not today.”

“I hope some people say yes about donating to JDRF,” I said quietly to my cashier.

She nodded as she put my things into a bag.  “Yeah, most people say no.  I haven’t had a single donation yet today, but I had a few yesterday.   I always ask, though.  It means a lot to me.”

“Oh yeah?  Do you have a personal connection to diabetes?”

“I do.  My dad has diabetes.  Type 1, since he was about eight years old.”

“Really?  Me, too.  I was diagnosed when I was seven.”

She looked at my face, then her eyes drifted to my hip, where my insulin pump was visibly clipped.  “No kidding?  Is that your pump?”

“It is.  I’ve been pumping for about ten years.  I use a continuous glucose monitor, too.”

“My dad is old school.  He does the injections with syringes.  He’s had it my whole life.  He’s had some low blood sugars that I remember.”

“My daughter is five.  I bet she’ll have stories about my diabetes when she’s our age, too.”  I smiled at this woman who was the fast-forward of my own little Bird, a child without diabetes raised by a person with diabetes.  This woman’s understanding of my own day-to-day was intimate, and we had yet to exchange names.

As I paid for my purchases, she raised an eyebrow.  “Do I even have to ask if you’re donating?”

I shook my head.  “Nope.  Count me in for a sneaker or two.  One for me, one for your dad.”

 

Stream of Consciousness.

Time for a bullet list of purged thoughts, brought to you by the bottom of my coffee pot.

  • It’s not snowing.  I don’t usually have a rage response to winter, but this one has been more than we could properly manage.  (Like when our snow shovel broke under the weight of the drift we were shoveling through.  Or when our snow blower ran out of gas and the gas was in the shed out back and we couldn’t get to the shed because the show was up past our hips.  #fuckyousnow and I mean it.)  So for it to be #notsnowing and #melting is a good thing.
  • Get these hashtags off my blog. #nottwitter
  • For a solid five year period, I did not lose a single pair of gloves.  If one fell out of the car when I opened the door, I saw it immediately.  If I dropped one, it always managed to fall into my bag and not end up lost forever.  Gloves were among the most lose-able things in my wardrobe and yet they always managed to stay paired up and on hand (literally).  But this year, something happened to my glove mojo and I’ve lost four pairs this winter alone.  I don’t know how to recover my good glove karma.
  • I have bought the same pair of moonstone stud earrings a dozen different times, and yet I still only have two singular earrings.  It’s unnerving.  Do these cheap little earrings go where the gloves go?
  • This weekend, I’ll be at the Diabetes UnConference in Las Vegas, where there isn’t any snow and there are many PWD on tap to attend.  I’m looking forward to making new friends, seeing old ones, and bolusing for copious amounts of iced coffee.
  • Way to GO, mySugr!!!
  • Does emotional stress spike up your blood sugar?  Caroline dives in to find out.  (But the answer is yes.  A firm and confidence yes.)
  • Did you guys see that the Spare a Rose totals have been boosted, thanks to a donation program from Asante426 lives saved, thanks to all of you.
  • Thanks to #dblogcheck day, I found some gluten-free lemon bars on this blog.  And now I love this blog.
  • At the Rhode Island JDRF TypOneNation event last weekend, I heard about a new sort of barrier tape to put underneath my Dexcom sensors to help mitigate the wicked rash.  It’s called Mepitac tape and I bought my first roll off of Amazon this morning.  I have no idea if it will work better/worse than the J&J Toughpads I have been using for the last three years, but I’ll try anything to keep the itch at bay.  Will report back after I give it a go.
  • Ripped from DHF’s site:  “The Diabetes Hands Foundation is happy and excited to offer scholarships to diabetes conferences as a part of the Diabetes Advocates program. We offer these scholarships to help get advocates to the major conferences in the US so the patient voice is present.”  You can find out more about the scholarships here, and then you should APPLY because your voice MATTERS.  All caps and such.
  • My friend Jenni Prokopy (the ChronicBabe) kicks ass, and I want her to continue to kick ass.  Check out her kick(ass)starter here.
  • I keep circling back to this David Sedaris essay about his FitBit because I am in a hardcore week of competition with an equally-competitive friend on FitBit, and I’m afraid I may wear holes in the soles of my soul in efforts to win.
  • But as I write this, I’m already itching to get up and clock a few miles on the treadmill in an attempt to gain some ground before traveling this afternoon.
  • In related news, I am relentlessly competitive.
  • And with that, I need to go run.
  • While I’m gone, the cats will guard the door like little, furry sentinels.

Guards.

A photo posted by Kerri Sparling (@sixuntilme) on

 

 

All About that Cure.

Ever stumble upon an ear worm while you’re waiting in the airport?  For me, it’s usually something like “On the Wings of Love” that ends up embedded into my brain for hours on end (thank you, Mr. Osborne) but yesterday morning it was “All About that Bass.”  Except it was with a diabetes twist, thanks to a JDRF walk team in Tucson, AZ:

To support their team, visit their walk page.  In the meantime, jam out to their earworm.

 

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