Day-to-diabetes requires a lot of focus on timing: what time did I take my insulin, what time did I eat, what time will I exercise, what time will I be in a meeting, what time am I planning to go to bed, what time will my insulin and my food seemingly serendipitously meet somewhere in my body, mapping out into my bloodstream … the list of things to be timed is on-going.
Pinch hitting for a misfiring pancreas is the embodiment of the White Rabbit.
The healthcare/medical device system adds a few new yards to this rabbit hole I’m tumbling down. This past week, I had a G6 sensor fall off after only four days of wear, with only one sensor in house. I had to wait five days until I could reorder, opening a weird timing window. Will I receive new sensors before the 10 days are up on this current one? Nope, because there’s a backorder at Dexcom.
Should I open the last G5 transmitter and use my last box and a half of G5 sensors? Mmmm, unsure because that would start the 90 day timer on that transmitter and then I’d be running out the clock on the last 3 weeks of my G6 transmitter and THIS SHIT COSTS $$$ and I value what I earn and what I spend on diabetes care and do not want to waste a stitch of these things.
I was away for the last few days and while I was gone, the replacement sensor for the G6 sensor that wept off my skin arrived. 10 more days of wear, starting tomorrow morning, still within the window of using my current transmitter.
But the clock continues to tick on to the next ordering deadline, the next scheduled payment, the next copay, the next quarterly insurance debit, the next open enrollment, the next held breath to make sure necessities are covered, the next time that diabetes makes me think more about my wallet than my pancreas.
Why we are forced to always live on the edge of failure is beyond me.
Actually, it is pretty clear. Insurance believes in last minute supplying after passing through multiple trip wires. This way, they get to hold any money in play longer. They make a lot of money by holding your money. Longer.
But if the system misfires- as it does ALL THE FREAKING TIME- you are left without essential supplies being delivered in a timely way. Or sweating and fretting about what must not be because of what might or might not happen.
How did it come to this?
I agree with you Nick. The constant stress of meeting multiple schedules while jumping through more and more hoops makes the challenge of everyday life with T1 D far more difficult.
How did it come to this?
…a broken system that long ago discarded a patient centered philosophy and replaced it with greed
I’m very biased (on the board for this org), but I throw a lot of support behind the Patient Revolution (www.patientrevolution.org) because it is addressing that exact issue: trying to replace a broken system of greed with one of love.
This is so familiar! Both my 22 year old niece and myself (20 years and 35 years of type 1 diabetes) have to deal with this and the part of the game that is waiting on hold to try and get the shipments going. I don’t understand why something so necessary to our lives has to be on a last minute time schedule!
Perfect timing on this piece….last transmitter died last week. Thought I had another, turned the house upside down only to find two empty transmitter boxes…ordered new transmitters. No order receipt, no tracking number, no confirmation order has been placed or sent. Also last week, pump battery starts going, dropping from 100% to 25% in less than 24 hours…new pump to be sent overnight….shipping delayed to weather (OK, maybe, between San Diego and Portland?). While waiting for said new pump, filled new cartridge, set new site, only to be plagued by constant occlusion alarms (like every 1/2 hour). After a couple of different infusion sets, decided to finally redo a whole new cartridge and infusion set…thankfully fixed the problem, but only after wasting a fully filled cartridge. Transmitters arrived today, pump waiting to be picked up at shipping store. Even with all that drama….I have to give a shout out to tandem customer support!!!!
There have been a few times when I have gone a week without a sensor because my last sensor died and the next shipment wouldn’t arrive in time.
Remember to schedule the next endo visit. Remember to check how many supplies I have remaining before the next endo visit. Remember to check your prescriptions before the next endo visit. Remember to send in the insurance co-pay. Remember to check the cash level in the HSA account. Remember to get blood test done two weeks before endo visit. Remember to ….
…does the list ever end.
I can so relate to this. Several times in the past year I’ve had to go without pump or CGM supplies because I ran out and either couldn’t reorder yet, or encountered delays in the processing and shipping. Going back to needles or only-finger-pricks is not fun when I’ve gotten used to the new and amazing technologies we get to use these days. Neither is it amusing to watch my last box dwindle, trying to figure out if there’s any way I can extend what I have, somehow make it last a little longer…
Around end of year was particularly bad last year: because a lot of people order a bunch of supplies to use the last of their yearly benefits, I was told. And there I was wondering how anyone could be that strategic, when I reorder as soon as insurance allows and am always pushing up against the limits of running out each time.
Add to that the stress of traveling, and trying to guess where I’ll be when new supplies will actually arrive. More than once I’ve been wrong, and had supplies waiting for me at an address I wouldn’t be at for days.
It’s quite frustrating. At least it helps to know that I’m not the only one who ever feels that way.
Those new tech things are awful. I love the simple finger sticks, after fifty years plus, and injections. I am in good control without extra supplier fears. Wish you guys could get your necessities though a system as fast as Amazon Prime. …..here is something I forgot to mention on earlier reply following blog about feeling worse after reading cgm low number. I read that cgm readings are actually 10-15 pts. behind the actual present-time number. I get info. by way of videos from diabetic nurses in England. If I could wear one of those bg readers-type gadgets during 2 hour swims I might have tried it, but my swims are very beneficial. The gadgets, even with plastic tape covers, cannot take the vigorous pool action and the heat of the following spa tub. So far, anything short of a functioning pancreas has its own rules and problems.
[…] because it works for 90 calendar days, not 90 days of use (… which I think is bullshit. The timing of diabetes crap is so frustrating, so I’ll slap a new sensor on in order to get the most life out of my transmitter, even when […]
[…] there was a sarcasm font that allowed me to properly communicate how irritating it is to have to jump through so many phone call/paperwork/time lost hoops in order to access a device, that while I’m grateful for access to, is part of a disease I […]