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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.

 

DBlogWeek 2017: Diabetes and The Unexpected.

Diabetes Blog Week prompt for Monday: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Diabetes Blog Week YAYYYYYY!

Unexpectedly, my iPhone decided to update itself on Saturday night.

I must have “agreed” to terms of service and scheduled the update, but I didn’t think the process through, because if my phone is updating the operating system, that means the processes on my phone are sort of stalled.

Including my Dexcom data transmission.  Which means I didn’t have any CGM data streaming overnight.  The low blood sugar came out of nowhere, a product of stupid poor planning and over-correcting a high in the wee hours of the morning.

Mother’s Day morning broke open with my body outlined in damp sweat, my color ashy, hands shaking, but my mind still sharp, considering my blood sugar was 35 mg/dL.

Super low glucose result - crappy way to start the dayOnly once or twice before, in thirty years of diabetes, have I ever felt close to passing out, but the precursor feelings seem to be waves of unconsciousness that lap at the edge of my mind coupled with a calm, reasoned mind, as if I knew I was about to go under and I needed to mentally take the biggest breath I could.

I had the sense to call Chris (he was downstairs with the baby) and ask him for juice.  I was afraid to sit up, thinking that might be enough to tip me into the abyss.

I asked him to put the baby in the crib in case I needed physical help.  I spoke to him through a mouthful of glucose tab dust, asking if he knew how to use the glucagon on the bedside table.  He said yes.  I asked if he could please hand me a towel so I could mop the sweat off my forehead.  The whole discussion was so calm, so structured, so oddly practical in contrast to the panic of being intensely low, the voice in the back of my mind screaming “AAAHHHHHHHHH!”

Makes me think I could solve quadratic equations while putting out a car fire while sitting in said car.  And the car is moving.  Fast.

Actually, that’s sort of what we do when severely hypo.

Unconsciousness due to a low blood sugar is the unexpected I think about the least, but prepare for the most.  I mean, I think about it, but not obsessively.  I just prepare all over the place, just-in-casing myself with juice boxes and raisins stashed in my frequently visited spots.  I try to always have fast-acting sugars on hand no matter where I am.  I share my CGM data while traveling. I keep that glucagon shot on the bedside table.

We’d talked about glucagon a few weeks early, after I’d refilled my prescription.  We almost used it when I was throwing up from the flu and my blood sugar was stuck at 45 mg/dL, not able to keep down the juice or tabs I was consuming.  It’s part of planning for the scary moments while simultaneously pretending, “Oh, that could never happen.”

Eventually, my blood sugar came up.  Exhausted from treading the hypo-waters for so long, I almost immediately fell back asleep on the damp pillowcase.  When I woke up again, I looked over at the glucagon kit, thankful for the fact that it was still sealed and hoping it continues to collect dust.

“Don’t you all know each other?”

A few weeks ago, we were in Venice and I almost walked right into the canal because I saw a lady with an insulin pump on her waist and a CGM sensor on her arm, speaking Italian to the shopkeeper and casually wearing her pancreas on her hip.

The flurried rush of emotions – excitement, understanding, the urge to shout “one of us!” – flooded me.  I grabbed my husband’s arm and said, “Hey DID YOU SEE HER PUMP?!” and he was all, “No, where?” and I pointed my finger while trying to make it look like I was itching my nose.

And my daughter said, “Yeah mom, I saw her!  And her pump! Do you know her? Don’t you all know each other?”

(You know, I wish we did.)

And even though we don’t all know one another yet, we can contribute to the growth and collective power of our diabetes community by participating in Diabetes Blog Week.  Sign-up details are on Karen’s blog – this is the 8th year! – and topics will be provided throughout the week.  And if you’re not into running a blog, you’re welcome to guest post here on some of the topics, if you’d like.  (Email me!  kerri (at) sixuntilme  (dot) com. )  Also, you can shape-shift the topics to fit into 140 characters on Twitter, or through Instagram, or other social sharing platforms.  Don’t let the “blog” in blog week keep you from sharing your story.  All voices are welcomed!

What to Work On.

I’ve gotten lazy in my diabetes management.  And I’m not proud of it.  My recent A1C result was still in my goal range but not where it was a few months ago, and I’d love to return to that level of control.  Thing is, I’ve gone soft when it comes to following through on my daily diabetes duties.

Yeah.  I’m at that point in the postpartum recovery thing:  finding ways to up my diabetes game.

I can check two things off my to do list with confidence:  I wear  my Dexcom every, single day and I also have been on top of my doctor’s appointments.  Those two things get big, fat gold stars.

Other stuff needs some grooming, though.  Here’s my wishlist:

  • Check fasting BG immediately after waking up.
  • Calibrate CGM right when it requests calibration.
  • Pre-bolus at least 15 minutes before eating.
  • Exercise 3 – 5 times a week.
  • Sleep more than 5 hours a night.
  • React faster to the high alarm from my Dexcom.
  • Rotate my device sites better.
  • Remember to eat more than coffee before 1 pm.

Hmmm.  That’s a lot.  Plan of attack for each:

  • Check fasting BG immediately after waking up.  We just moved the little Guy out of our bedroom and now he’s sleeping in his crib in his own room, so I have a little more time (3 min versus zero min) in the morning before I have to run and grab him.  I need to return to the habit of keeping my glucose meter on the bathroom counter and using it before I brush my teeth in the morning.
  • Calibrate CGM right when it requests calibration.  Ugh.  This just requires being less of a lazy tool and just checking/calibrating ASAP instead of ignoring the little red blood drop.
  • Pre-bolus at least 15 minutes before eating. This one is admittedly going to be challenging, as my schedule is a little non-scheduley these days.  My son is a busy little creature and also unpredictable, so it’s challenging to find the “right time” to do things like change out my insulin pump, eat breakfast, schedule conference calls.  But as he gets older, he does seem to be settling into something resembling a pattern, so maybe this will get easier.  I’ll try to pre-bolus.
  • Exercise 3 – 5 times a week.  This one is already going in the right direction.  As mentioned, I joined a gym and that gym has childcare, so there’s no excuse.  Except days like over the weekend, when I was away for work, or today, when the little Guy is so sniffling and booger-gross that I don’t want to bring him to the daycare and expose any other kids/adults to his germs.  We did go for a walk around the neighborhood today, clocking in at least a little bit of exercise, so that helps.  The weather warming up will help here, too.  This bullet point is one I’m putting like half a gold star on.
  • Sleep more than 6 hours a night.  OH HA HA HA HA.  The baby thinks 5.30 am is when human beings should wake up.  The early morning hours are gorgeous and I love the quiet of being awake that early, but around 10 pm my body starts to give up on doing body things, although I rarely make it to bed before 11.30 pm.  I need to work on this sleep thing.
  • React faster to the high alarm from my Dexcom.  Again, this one is something I just have to DO.  No excuses and no reason not to.  My high alarm used to be 140 mg/dL (pre-pregnancy and during pregnancy), but I’ve moved it to 180 mg/dL in the last few months.  I should be responding to 180s.  I will work on this.
  • Rotate my device sites better.  Yep, this is also a need.  My thighs have become a permanent home for my Dexcom sensors, but I am okay with the back of my hip or maybe my arm.  I’ll try to get creative.  As far as pump sites, I’ve been working on rotating those better, too.  Maybe it’s time to try a lower arm site?  (Has anyone ever done that and does it hurt??)
  • Remember to eat more than coffee before 1 pm.  Yeah, this is another whoops.  My mornings are generally a bit crazy, and sometimes I’d rather keep my CGM graph steady instead of interrupting it with breakfast.  But this is backfiring because I then get so hungry around lunch time that I eat the fridge, causing a nasty post-lunch bounce.  Moderation here.  Eat regularly throughout the day and I’ll be less likely to unhinge my jaws and devour the contents of the cupboard.

I hope writing this crap down will help up my accountability and will inspire me to keep moving forward.  If I can make one or two of these become habit in the next few weeks, I’ll mark that as a success.  Because backwards is all gross and disgusting feeling and also it looks like there’s a c-section back there and I am NOT going back to that.

Twelve Years Old.

My blog turns twelve years old today.

Twelve years ago, I was a twentysomething mess wondering if I was the only PWD who wanted to connect with other like-pancreased people.  Twelve years later, I’m a thirtysomething mess who has found her peers and benefitted from those connections in ways that far surpass any drop in A1C.

Grateful doesn’t even begin to touch how I feel about the last 12 years.  Thanks for being part of it.  And for making the journey with diabetes one we’re on together.

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