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Posts tagged ‘type 1 diabetes’

Verio Sync: Unanticipated Glitch.

The Verio Sync meter and I have been happy friends for a few years now, starting back in late 2013.  (Here’s that first post, with disclosures aplenty. Second impressions are here.)  

I honestly can’t figure out why more people aren’t using this meter.  It’s fast, it’s accurate, and the Reveal app is awesome.  This meter has been the best fit for me in the last few years, which is a big statement because I historically revolt against excessive change when it comes to diabetes tech.

Bottom line:  I like this meter.  Quite a bit.

Footnote on bottom line:  Until last week, when I tried to upload my information to the app, which had been recently  updated on my phone, which meant the app needed all of my information again, only to realize that the PIN had worn off my meter and I couldn’t enter it into the app.

Holy run-on sentence, but the end result is no PIN?  No upload.  No upload?  No data access.

Pain in the ass, that is.  Had I known, I would not have updated the app on my phone.  Had I known, I would have written the PIN down on a piece of paper.

But wait a second … I was just at Joslin with my endocrinologist, and she was able to plug my meter into her computer and upload my data.  No PIN, no hassle.  She had some magical data system that siphoned my health data into their files.  How come my doctor can access my data but I can’t?

The guy who talked to me for ages on the One Touch customer service line was very nice, and very helpful, only ultimately couldn’t do anything other than offer to send me a new meter (which still has not arrived).

“You’ll receive a shipping label to return the old meter,”  he mentioned.

“Can I wait a few weeks to return it?  I want to see if my doctor can get the data off that meter before I send it back.  I want those numbers, if I can get them,” I asked.

“Sure thing.  Not a problem.”

So he was very nice.  But the underlying problem here is that the data on that meter is mine.  My glucose data, generated every morning, every time I eat, and every night before bed.  It’s the specifics of my diabetes day, dictating the content of my dinner plate and influencing the integrity of my CGM sensor.  That information is mine.  And yet my doctor has the key to open access but I do not.  She has a “pro” account but I’m managing my disease daily, and yet I can’t access my own data from my own machine.

This doesn’t make sense. It’s my data! This problem can be fixed once patients are given the tools to manage their condition, instead of information being held behind a wall of medical privilege. You know … once we’re viewed as “pros,” too.

UPDATE: Lifescan called me a few minutes ago. Here’s the rundown:

Hypo Kick.

“I heard the alarms going off, yeah.  But what woke me up completely was when you started screaming,” Chris said over breakfast.

“Oh yeah.  That was a thing,” I agreed, remembering that moment clearly.

On the whole, I’m a very quiet sleeper.  I don’t snore, I don’t move around much while I sleep, and generally I’m silent, except for the occasional whimper (apparently I make small yapper-type dog noises while falling asleep).

That explains why my terrified screams  jolted my husband awake last night.

Dexcom alarms started going off around 2 am, at which point I woke up, had a juice box and some raisins, and went back to sleep.  But it wasn’t a restful sleep, still punctuated by the low blood sugar alarms blaring into the night.  I woke up to the low alarm five minutes later, decided to wait a little longer to see if my blood sugar was going to climb, fell back asleep, the alarm went off … this cycle of interrupted sleep and CGM soundtrack went on for the better part of an hour.

But eventually, I was back up to 75 mg/dL, so I thought I was fine.

Only the snack wasn’t cutting it, and my blood sugar started to tumble yet again.  My Dexcom started bleating out alarms once again, but I wasn’t awake.  I was dreaming, actively, only in my dream, I was aware that I was low.  And also that I was asleep.  I don’t remember the storyline of my hypo-induced nightmare, but during the course of it I realized I was low and, if I didn’t wake up, I would be in some serious trouble.  Dreaming Kerri decided that, in order to wake up Actual Kerri, she needed to scream.  Loudly.  It was the kick my Inception-influenced mind needed to bring me fully into consciousness.

So she did.  I did.  (The pronouns are starting to tangle.)

“AAAAAAAAHHHHHHHH!!!!!!  AAAAAHHHHHHHH!!!”

“What?  WHAT?!”

I clumsily reached past my blaring phone towards my meter, with 48 mg/dL the result on the screen.

“I’m very low.  Could I have juice, please?”

(Our communication skills about lows, especially 3 am ones, has been diluted down to screams, jolts, and polite, disembodied-voice requests juice.)

A full glass of juice and two hours after the lows started, it was done and sleep finally returned.  But my dreams were still strange, still restless, still confused, and when I woke up to ready my daughter for school, I wasn’t entirely sure if I was really awake.

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.

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

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