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What Improves My Healthcare Experience.

What would improve the healthcare experience for me, as a patient with multiple health conditions?  I’m glad you asked.  (You did actually ask, right?)  A few things would help move things forward.  Here’s a thought-purging because I happened to have coffee:

Billing processes that make sense.  For example, I received a refund for mail order pharmacy overpayment in the same week I received a collection notice for the same account.  I had overpaid because their receivables system wasn’t as fast as their billing system, which flagged my account for collections when in fact I was ahead of the game.  If the billing system was synced properly with the accounts receivable system, they would have known I was in the black, not in the red.  But thanks for sending all those letters telling me I wouldn’t receive any more insulin shipments unless I paid the (not due) balance.  Fuckers.  (Also, get paid for things that make sense.  A test to diagnose me with type 1 diabetes twenty-nine years after my type 1 diabetes diagnosis is ridiculous, but required by my insurance company.  What a waste of resources.  Spoiler alert:  I have type 1 diabetes.)

Everyone be on time.  Simple, right?  If my appointment is at 10 am, I show up no later than 9.45 am, usually 9.30 am.  I’m afraid of being late.  But the HCP showing up at 10:15, 10:30 … 11 am is fine because their schedule takes precedence over mine?  I understand being late from time to time, but a 10 am appointment should not linger well into lunch time.  I like lunch too much to miss it.

Make getting paid easier.  My doctors should be paid for what they do.  If they review my CGM data, there should be a billing code that pays them for that review.  If they (by the grace of some fancy god) are able to email me, they should be paid for sending that email.  Their medical expertise is hard-earned and should be properly appreciated.  To that same end, my insurance company should pay out (incentivize!) proactive care instead of reacting to chaos.  My parents should not have had to battle for more than three test strips per day for me when I was a kid.  Checking my blood sugar should be fully covered, as it’s an investment in keeping me healthy.  Pay to keep my body whole, don’t start paying once it starts falling apart.

Don’t let money drive.  Twice in the last three months, I’ve had to make appointments with new care providers and the very, very first question out of the receptionist’s mouth is, “What insurance do you have?”  This is immediately after, “Hello?”  I would guess that this is in effort to streamline the phone tree (and triage) process, but you don’t even know why I’m calling.  And you have no idea what I can and cannot pay for.  Asking if you’ll be paid before asking if I’m okay puts financial needs in the driver’s seat … yet another driver, with the patient tied up in the trunk.

Treat me where I am.  If I come into my GP’s office with an issue that applies to their primary care practice but they consider it a diabetes-related issue and they refer me back to my endo in order to receive care, that’s crap. Treat the patient where they are.  Ask about and then make the mental health referral in my endo’s office, please.  Don’t turn me away if I come to my PCP with a diabetes need.  Sometimes it’s difficult to get time off to go to the appointment, and having the issue not even addressed because it’s deemed out of scope makes it that much harder for me, as a patient, to coordinate care.

Integrate the shit out of things.  My A1C should be sent by my endo to my primary care doctor’s office.  My pregnancy file should be sent from the high risk maternal fetal medicine office that delivered Birdy to my “regular” OB/GYN here in Rhode Island.  (Why am I still tracking that information down, almost six years later?)  My dental records should be on file at my PCP’s office.  Any visit with a mental health professional should be documented and sent to my PCP and my endo.  I’m not asking my medical teams to start a softball team, but it would be good if my information flowed in a predictable and useful way.  Instead, I have this weird folding file of information and lab work and notes in my phone, creating a patchwork quilt of my medical information that’s a little threadbare.  It would be great if EMRs (or EHRs or EMFs) actually worked for me, and for my medical team.  Otherwise, they become another tool that keeps my medical team from making eye contact with me and I’m still dragging around that folding file.

Life with chronic illness has taught me that the medical system is gross and broken.  This isn’t a hard and fast fact (see also:  you are reading this on the Internet, therefore consume with grains of metaphorical salt) but anecdotal experiences eventually harden into truth.

And that truth is my life with diabetes.

Perspective.

Perspective came slamming in two weeks ago when I heard that a friend’s young daughter had died.  She was four years old.  My friend’s grief was palpable and touched the face of everything that morning.  Our hearts ached for her loss; it was impossible to find a single word that even scraped the surface of the hurt we felt for her, never mind attempting to imagine what she was actually feeling and going through because we atrophied at the thought of that kind of loss.

Even though her grief is not mine to experience or mine to share, it continues to leave a lasting mark in our home.  We’re kinder to one another.  Patience is not as thin.  We’re grateful in ways we’d forgotten how to be when looking at the tiny collections of socks my daughter sheds throughout the house, or when surveying the mountain of crayons and drawings on her bedroom floor.  We hug a little more, say thank you a little more.

Kids are not supposed to die.  They just aren’t, and saying “it’s not fair” is itself unfair in how little of the magnitude of loss that sentence properly conveys.  It’s been difficult to write here because everything seems stupidly trite compared to the chaos unfolding in a house that’s not ours.  A low blood sugar?  Dizzying but easily fixed.  Frustrations with technology that’s not behaving as advertised?  The reflex of rage is tempered by the realization that we have access.  It’s a strange head space, to be forcibly removed from the outrage machine that often flexes its muscle in social media.  I wish so much that it hadn’t been the death of a child that reminded me how people are supposed to treat one another. 

In that respect, I’d give anything to feel sanctimonious rage again.

My apologies for not writing her much in the last week or so.  Apologies for being self-righteous about self-righteousness.  There are a lot of apologies I need to issue, and a lot of things I need to be more actively grateful and thankful for.  I resolve to try harder.

Thank you, little owl, for leaving a legacy of love.  I’ll do my best to follow in kind.

If you are able to make a donation to CureSearch for Children’s Cancer, please do.

#latergram

A photo posted by Kerri Sparling (@sixuntilme) on

Gadgets and Gizmos.

Getting dressed this morning and trying to shove an insulin pump and a Dexcom sensor and not map the silhouette of my dress with pump tubing was an exercise in frustration, and that song from The Little Mermaid kept going through my head.

“I’ve got gadgets and gizmos aplenty … I’ve got whosits and whatsits galore …”

But I sat at breakfast during my meeting today and elected tea over actual food because my blood sugar, despite excellent technology and fastidious care, was elevated and stubborn about staying that way.  Despite best efforts, diabetes was still a pain in the ass this morning, and there wasn’t much I could do about it.

And that urge for a cure, some version of it, became strong.  Come on, research.  Come on, artificial pancreas teams.  Come on, islets.

I want more.

Hypo Perspectives.

Last night my low alarm went off like a siren in my bedroom, partly because I had hooked my phone up to a bluetooth speaker to (successfully) help amplify the Dexcom alarms, but mostly because my blood sugar was 50 mg/dL.

How the alarm didn’t wake up my daughter (clad in Captain American pajamas and asleep in my bed because Chris was out of town last night) is beyond me.  How it didn’t wake me up the first few times it went off is beyond me as well, since I was low for about 35 minutes before actually acknowledging it.  A text message from my husband, asking “Are you awake and drinking juice?” grabbed me from the fog.  (Thank you, Dexcom Share, for making the “Big Brother” moments worth the moments when I need a hand.)

Some lows are textbook ones in that they employ symptoms like a sweaty forehead and clumsy hands, but a juice box or some glucose tabs or a banana can take the edge off those symptoms at first bite, the adrenaline surge of the low quieted by a chewing jaw.  These lows don’t leave a hangover or a residue of panic.  They just happen, and then they’re over.

Other lows are so odd, so disconcerting, so thick with confusion and hypo fog that I find myself unable to put the straw into the juice box, or to even reason with my brain that a juice box is necessary.  Last night, my hypo-addled hands weren’t able to push me up onto my elbows so that I could eat or drink anything without spilling it all over the bed. 

My kid slept beside me, unaware and occasionally stretching so her hands tangled in her hair.

I frigging hate these kinds of lows.  Somehow, I ended up treating with juice and felt the need to wander downstairs into the kitchen and have a box of raisins.  And then a second box of raisins.  And then another glass of juice.  I remember standing at the kitchen island and taking two units of insulin after grossly over-treating this low, still wobbly from still being in the low.  I know I didn’t need to eat anything else after that first juice box but for some reason, my body needed comfort.

In that moment, I’d trade a 250 mg/dL for the waves of nausea and unconsciousness that lapped at me.

I went back to sleep damp with sweat, covered in juice.

This morning, the plastic sleeves of two juice boxes were on the bedside table.  I corrected the high blood sugar I had eaten myself into.  The bedsheets are in the wash in efforts to remove the carb count from their thread count.

The trench of a very unsettling overnight low blood sugar and the mountain that followed. #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Pump Peelz Gift Card Winners!

Giveaways are fun, but the entries received on this Pump Peelz Superhero gift card giveaway were truly awesome.  From Sir Lancet-a-lot to Carbo-Man to Madame Betta, the superheroes created by insulin-infused imaginations are incredibly fun.  And now, on to the winners!

The superhero call:

To enter the giveaway, you need to leave a comment on this post that includes a fictional diabetes superhero name and that superhero’s special power.

Through a fastidious screening process that included (but is not limited to) which entries made everyone in my house giggle and which ones the cats sniffed the computer screen longest for (<– this part is not true … perhaps), the entries have been narrowed down to three winners.

THIRD PLACE:  “Agent Sticky”. Who happens to be able to scare any Dexcom sensor or infusion site into actually sticking on someone’s skin until they want it to come off, even if they go swimming. Or bump into doorways, as I’m prone to do when I cut a corner too hard. I’m picturing a cross between Agent K from MIB and Coulson from The Avengers.  — submitted by Morgan T

SECOND PLACE:  “My superhero is Queen Islets of Wonderhans, who can cross her arms and stomp her feet and create perfectly working cells that make insulin again.  Why not!?” – submitted by Lucia Maya

And … FIRST PLACE! “My super hero would be Master No-No Carb. His super power would be to remove all carbs in your favorite foods by using a super high powered vacuum to suck the carbs out all while leaving the sweet goodness behind.”  –  submitted by Andrea

Our first winner will receive a $25 gift card, the second place winner gets a $10 gift card, and third place wins a $5 gift card.  Winners, you’ll receive an email from me connecting you with Scott and Emily from Pump Peelz, and they’ll send along your gift cardCongratulations!! 

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