Tagged: continuous glucose monitoring
My Affair With Earnest Hemingway…
My affair with Earnest Hemingway is neither about love, nor about hate.
It is about his paucity of words and the emotions you must mortar into the cracks of his meanings.
It is about his inability to end a story (or even his life) with any hope or joy.
It is about his words that slip beneath my skin to leave me shivering.
It is about how I abhor reading the words he wove together and yet, a quote he gave has shaped my life and aptly explained my last few weeks.
Not Reading It Again
I was subjected to Old Man and The Sea twice in high school, pulling apart overarching themes and writing trite, hackneyed literary criticisms just like every other teenager. Why twice? Three high schools in four years means forced rereading of a few books. (MacBeth was a three time winner - middle school gave me a head start, Midsummer’s Night Dream was also twice, but thankfully, Crime and Punishment and a list of Russian names written down for reference was, thankfully, devoured only once.)
Upon reaching the third high school in January of my junior year, my English literature teacher handed the book we would be reading next. Old Man and The Sea. I handed it right back.
“I’m not reading it again. I’ve read it twice. Hated it twice. Dissected it twice. It’s depressing. Give me something else to read and I’ll do a separate assignment.” (Yes, even as a teenager, I was… is pushy the right word?)
So, my teacher brought in his personal copy of A Farewell to Arms by Ernest Hemingway for me. In retrospect, I think he did it to spite me. “Old Man and The Sea is depressing? I’ll show you depressing.” I read it and neared the end, clutching that tatter of hope his characters created for themselves.
Hemingway is an ASS.
If you were in my neighborhood as I read the last two pages, I apologize for the angry screams of: “COME ON! SERIOUSLY?! Hemingway is an ASS!” I stomped into class the next day, threw the book on my teacher’s desk, and muttered: “This sucked worse than The Old Man and The Sea.”
To this day, I have yet to read any of his other works. Don’t ask me to do so. There are many other pieces of literature that can depress me, but none with the compact, gut wrenching nature of his view on life. I get enough of that already from reality. (Lest you think I like sappy, happy movies or books… I abhor those, too.) One day, perhaps, I will have the strength and resolve to read the rest of his painful brilliance. For now, they wait.
But… he said something that, if I had any desire to tattoo my body, would be inked across my chest:
“The world breaks everyone, and afterward, some are strong at the broken places.” - A Farewell To Arms
COBRA
Over the past few weeks, the world did its best to break us. Two weeks after meeting our high deductible health plan’s deductible, John’s company surprised a few people by laying them off on the last day of October. Surprise! Including John.
All of the benefits: medical, dental, etc. was terminated “on the last day of the month“. That meant that day. My supplies (and new Dexcom transmitter) hadn’t been ordered. And I couldn’t get them ordered in time before the end of the day. OK, I thought. Breathe. I’ll just order them all when we purchase COBRA.
We’ve purchased COBRA before, but when I called to find out the cost, it was outrageous. Laughably outrageous. The representative gave me this advice:
“Purchase everything out of pocket and keep the receipts; if the total for the month was higher than the cost of COBRA, go ahead and pay COBRA and you’ll get reimbursed.”
We started to investigate other options, including Healthcare.gov’s plans for our state and found that those plans were better - and less expensive - than what we were paying if you factor in the high deductible. Yes, I know all about the pre-tax blah blah blah, but it was frustrating to think that we could have avoided the shenanigans with medical decision making this year if we had just eschewed his company’s crappy medical insurance plan and gone with a marketplace plan.
The World Breaks My Technology
A week later, my Dexcom transmitter died. It was a slow death and I knew it was coming, but when it finally shuffled off its digital coil, it was still jarring. It also felt like it said: “HAHA, I knew you didn’t order a replacement before your insurance kicked it!”
I went without, reminding myself that I went without continuous glucose monitoring for years. Of course, every time I checked my blood sugar, all I could think was: “What would the arrow say?” Blood glucose checks increased, but I felt unsure. I felt high, but I was within normal range. I felt shaky, but I was slightly high. Adjust, check, adjust, check. I didn’t trust how I felt. For good reason.
Et tu, Brute?
Then, in solidarity, my insulin pump died. Four weeks and two days out of warranty. I hadn’t ordered a new one because… you know the story. Deductible. Crappy coverage. It happened on a Friday night while I was across the country, but if your pump is going to stop working, it should stop working while you are standing with other Type 1s at the Diabetes Mine Innovation Summit.
“What the hell? I can’t bolus. Look!” I showed the pump to the group and the troubleshooting suggestions started to fly fast and furiously. “Try this!” “Take the battery out and see if it will reset!” “Let it time out and see if that will do anything!”
And then…
“It’s says Button Error.”
The groan was collective. In the fifteen years of pumping insulin, I had never had a catastrophic failure. And of course, with my head being not in the game, when I packed, what was the one thing I didn’t bring? The back up bottle of Lantus. My head started to go down the rocky road of microbolusing or finding an open pharmacy or spending time on the phone with the pump company begging for a loaner when one of the people standing in the group who uses the same pump as I do said something amazing:
“I have an extra pump that I travel with. You can borrow it.”
Do you know how hard it is to program an insulin pump with tears of gratitude in your eyes? Less than an hour after the failure of my pump, I was pumping again. BG upon reconnecting? 126. (I thought I was high. I felt high.)
Fortunately, my blood glucose monitors are holding steady. They obviously hadn’t gotten the memo that John had been laid off.
Suck It, Hemingway
Ernest thrived on making people miserable and ending his stories on a sad, introspective note. I’m no Hemingway (says the verbose woman writing this blog) and so the end of the story will be a happy one.
- John recently accepted an offer for a better job - better pay, closer to home, doing what he loves.
- Because I had done homework on Healthcare.gov, I was able to look at the medical insurance offered and decided we would choose a marketplace plan that is more expensive, but has better coverage - way better coverage and NO deductible for durable medical equipment. (I did a lot of homework, calling an insurance specialist and getting the answers about insulin pump and CGM coverage. It does pay to do your homework.)
- The DOC (Diabetes Online Community) and the diabetes community are filled with amazing people. A friend sent me her transmitter and a few sensors to tide me over. I have had many others offer to help with supplies. I am a firm believer in paying it forward, but never expected to be the one receiving.
- The posts I wrote about U.S. financial assistance and programs for people with diabetes and if you are a Type 1 without insurance was meant to help others… but I reread my own words. Twice. Maybe three times. And unlike Hemingway, those words and programs that companies offer gave me hope.
So, Hemingway. You’re right… about (at least) one thing.
The world does break us all. And I am stronger in the broken places.
But unlike the old man and a solitary trek into the ocean to battle marlins and sharks and the metaphors meant to taken from your work, this part of my story ends on a happy note, filled with helpful people and a community that does what it can when it’s needed.
The End
A Beeping Mess
And beeping is not a substitution for an expletive, although it could be. Since my trial of the Medtronic MiniMed 530G with Enlite, I’ve become my own electronica band, beeping melodically throughout the day and night. No rhyme or reason, thus no rhythm at the beginning, but I’m starting to see some trends.
The MiniMed 530G with Enlite has a unique feature beyond the Threshold Suspend (The pump suspends if the Enlite sensor says your BG reading is below your “low” threshold.). It has a “predicative high” or “predicative low” setting, which will warn you if the algorithm believes you are going to go outside of the ranges you have set. When we did the initial setup, I put my low range at 80 mg/dl and my high at 200 mg/dl. (I drop pretty quickly, so I’m trying to catch it before I get to that point where I am not thinking straight and ignore the sensor readings in favor of…well, anything, because I think it my blood sugar will come up on its own while I’m walking around. Hint: it doesn’t.)
It is the new equipment adjustment period or is it my body? The food choices I make? (Pizza, oh pizza… I love you, but that 400 mg/dl? Even my broken pancreas rolled its eyes.) I beep, look at the pump, and it says that a low is predicted, yet less than ten minutes later, it says that a high is predicted. I’m still not used to the arrows that are on the MiniMed screen and everything is pretty wonky overall. But I’m learning, and that’s the point of this trial. I will figure this out.
The accuracy is not really in question at this point. How do I know? Because along with the MiniMed 530G with Enlite, I threw my Dexcom G4 sensor onto my arm on Thursday. There have been several times when both the 530G and the G4 have buzzed and beeped at exactly.the.same.time. If there’s any inaccuracy issues, I’ve found that sometimes it’s the G4 and sometimes it’s the 530G, but neither one is perfectly accurate all the time. Thus is life.
I haven’t had a night in which beeping hasn’t woken me up. The Threshold Suspend alarm has gone off, only to check my blood glucose level and find it to be a beautiful 110. Other nights, I’ve woken myself up and I’m low, except the 530G hasn’t caught it. (Until a few minutes later when I’m standing in kitchen over a glass of juice.) That’s been frustrating, along with the lack of response by the system to recognize that I’m coming up from a low, insisting that despite my canceling the threshold suspend, it throws up another beep and alarm and threshold suspend less than 10 minutes later.
John and I have had several discussions about the “is it me or the technology?” He maintains that it’s the technology, and to a large degree, he’s right. I need to train the technology to work with me… and I am also recognizing that I need to begin basal testing again. (It’s springtime in Paris and my insulin regimen. Hooray!)
I’ll have to adjust the predictive settings as well with the trainer, so that I can cut down on the beeping. I do find that it causes undue stress (and I’m full up on stress, thankyouverymuch) and worry that I didn’t have before.
So, if you need me, just follow the beeping. I’ll be dancing with the glowsticks in the corner.
Guinea Pig: MiniMed 530G Insulin Pump with Enlite
In second grade, Mr. Harris introduced us to our class pet: a black, tan, and white guinea pig named Zipper. He (she?) squeaked quietly in a large cage filled with shavings in the back of the room while we learned about math and good citizenship. I got to bring him home for one of our breaks and loved on that little guinea pig while our cat shot daggers from her eyes. She was jealous.
Hi. Please call me Zipper for the next 90 days.
The MiniMed 530G with Enlite will become my insulin pump/sensor system, along with all that it entails over the next three months, thanks to a trial offered to me by Medtronic.
Here are the details of the trial, as I’m all into disclosure:
Medtronic is loaning me the entire system for the 90 day trial, including the 530G pump, CGM transmitter, Bayer Contour Next Link meter and test strips, Enlite sensors, reservoirs, and infusion sets. After the trial is complete, I will return all unused supplies as well as the pump, transmitter, and Bayer blood glucose meter.
I will be providing feedback to Medtronic through a survey and a one hour phone call after the trial is over. I will go through the entire set up as if I am a new pump user, including meeting with a Medtronic trainer and using their protocols and help desk. I will be changing my infusion sets every three days and my Enlite sensor every six days.
They won’t be putting words into my mouth (which is great, because it’s already full of my own) and I will share my honest opinion, my ups and downs, and what I think about the system. They know I’m not one to dance around the real issues, so you’ll get what you always get from me: unabashed and never whitewashed realism.
I’ve worn a Medtronic MiniMed pump for years and I’ve been happy with it. As I have said before, when I first started on a pump, there were only two companies in the game. As I was moving to Europe, I chose the “not Minimed” company, but when I returned to the U.S., Minimed had jumped so far ahead in technology, it was a no-brainer.
Time marches on and the market has expanded, not just with insulin pumps but with CGMs, and this is where my trepidation comes in. I had tried the Sof-Serter and abandoned it due to pain and accuracy issues. When I attended the Medtronic Advocacy Summit in January, I spoke with several Medtronic employees who assured me that the new CGM is less painful to insert and more accurate than before. We. Shall. See.
Why I’m Trying The MiniMed 530G with Enlite
I’m curious. (Isn’t that enough?)
I love my Dexcom CGM. I love its accuracy, it’s ability to eek past the recommended seven day readings, and the fact that my husband can take it from me and still watch my numbers as I snuggle in the other room with The Kid. (And yes, he has brought me a juice box when I didn’t realize I was going low.) I love my MiniMed Revel 723. My fingers know the buttons in the dark. It’s been a part of me for so long. There are other insulin pumps out there and I’ve petted some of them, wondering if I would like them just as much if not more than what I currently have.
But this Threshold Suspend thing that will stop insulin delivery if it goes below a decided upon BG level? Totally looking forward to that if it does what it’s supposed to do. My overnight lows, even with the Dexcom, are still pretty rough. I’m sleeping through my alarms until I get to the 55 mg/dl or below “prisoners are escaping” blare. By then, I’m wobbly, cranky, and I eat until I stop panicking. Total barrel full of fun the next day. As the Threshold Suspend is unique to the Medtronic Minimed 530G, it’s a big deal for me. Will it be worth giving up my Dexcom? Would it be better for me than the upcoming but not yet released Animas Vibe? Can I get over the non-open standard nature of Medtronic data? We. Shall. See.
We. Shall. See.
I keep saying: “We. Shall. See.” because you’re basically taking me home for 90 days. You get to watch me run around like Zipper and observe this experiment in ThePerfectD.com habitat. Fun photos! Great stories! An expletive or two! (O.K., I hope not…) Reality.
I would like a water bottle on the side of my cage, please. Maybe filled with caffeine? Can you do that for me?
My name is Zipper and I’ll be wearing the MiniMed 530G with Enlite for the next 90 days.
Squeak.
Warning Label
It’s no secret how I feel about blood glucose meter accuracy: without it, I’m dead.
Blood sugar monitoring devices have become the linchpin in diabetes care. The number shown on a screen is what determines how much insulin I take, whether or not I eat 15 grams of carbohydrates, and in conjunction with a continuous glucose monitor, whether my blood sugar is going up or down. In the days before home blood glucose testing, it was a total shot in the dark as to whether you were “in range”, because urine testing wasn’t accurate. (Then again, neither was the insulins that were used.)
That’s why I’m a vocal advocate for the StripSafely campaign, bringing awareness of the need to tighten standards and help those who have sway over accuracy and accuracy enforcement of blood glucose testing systems. Since it began this summer, StripSafely has made an impact with the FDA and we are continuing to work with those who want to help ensure we get the accuracy we deserve.
A First For The FDA
When a device manufacturer wishes to bring a blood glucose monitoring system to market, it has to submit paperwork to the FDA showing that it’s met the requirements and standards for the device in question. If it already has a device approved, it’s an easier process with less paperwork, basically showing a comparison to the existing device and highlighting any differences.
A recent approval for a device manufacturer came with something never seen in the diabetes device market: a warning label on every test strip box insert, user manual, and meter box. (I’ve redacted the name of the meter because, you know, bears.)
CAUTION
Blood Glucose Meter Accuracy is the most important criteria in determining glucose meter quality. The {meter name redacted} is less accurate than most other blood glucose meters sold today. The {meter name redacted} does not provide reliable accuracy readings beyond the following margins of error:
For glucose concentrations < 75 mg/dL, 95% of the results shall be within ± 15 mg/dL.
For glucose concentrations > 75 mg/dL, 95% of the results shall be within ± 20%.
DO NOT USE THE {meter name redacted} TO CALCULATE INSULIN DOSAGES.DO NOT USE THE {meter name redacted}TO CALIBRATE CONTINUOUS GLUCOSE MONITORS
The {meter name redacted} is less accurate than most other blood glucose meters sold today.
DO NOT USE THE {meter name redacted} TO CALCULATE INSULIN DOSAGES.DO NOT USE THE {meter name redacted}TO CALIBRATE CONTINUOUS GLUCOSE MONITORS
Why Would You Use A Less Accurate Meter?
Goodness gracious. So, for any person with diabetes who uses insulin (or may have to use insulin in the future, for those Type 2s currently on meds or on lifestyle modifications), you are cautioned by the FDA not to use this product. Why even bother purchasing it when you have other options? If you know that something is not accurate - and that accuracy does matter, why even bring it to market?
Money. Yeah. The meter and the strips are cheap, but what’s the real cost?
Health. Inaccurate blood glucose reading can result in wrong dosing decisions. It can result in hospitalizations. It can result in death.
I’m obviously not the target market for this meter, but I’m concerned that those who are looking to save on healthcare costs (or those who are under Medicaid or Medicare and are bound by whatever CMS approves), will not have a choice in whether or not they have to use it.
Mr. Yuk
The warning label is my most favorite holiday gift from the FDA so far. (Perhaps I’ll make a suggestion to the FDA that the warning label should have a Mr. Yucky face on it, which stood for poison when I was a kid.) I’m hoping that the manufacturer in question recognizes that this is an opportunity to either fix the accuracy of their product - or cut their losses and not bring it to the U.S. market.
Based on past history, however, the company may well just suck it up and stick the warning labels on their product, all for the sake of making a buck. And to that, I say this:
People with diabetes, we’ve got the FDA and StripSafely on our side.
Game on.
The Hiccuping Dexcom and Digital Xanax
We’ve come a long way from boiling pee with Benedict’s Solution to get an idea of our glucose levels. I’m impressed and content with my continuous glucose monitor (CGM) and how accurate and easy it is. Since I’ve consistently begun to use a Dexcom (I got a Dexcom Seven Plus and then upgraded to a Dexcom G4 last October), I’ve caught highs and lows that I know would have been a lot worse without wearing it.
Like much of the technology I use, I’ve become dependent upon my Dex. When it doesn’t work properly or when I’m not wearing a sensor, I suffer self doubt and “performance anxiety”. I don’t trust my body’s signals (and the Dexcom has shown there is a reason for that) when hypoglycemia and hyperglycemia hits and my increased blood glucose checks have me second guessing everything. The Dexcom calms me down, like a digital Xanax.
Dex has some issues over the past few weeks. It’s been hiccuping. I haven’t been calm.
I first noticed it when I was house hunting. An hour after breakfast, Dex would give me the dreaded three question marks for a few hours. Then it would start working for a few hours, but it was just teasing me. By late afternoon, question marks were back until late evening, when it would begin to give reading throughout the night. (I should be grateful for at least having the overnight numbers - and I am.) Lather, rinse, repeat for four days. Hiccup. Numbers. Hiccup. Numbers. Hiccup.
I didn’t want to rip the sensor out because it was my last one (my trip was extended and this was my extra sensor). Once I got home, it came out and I called Dexcom’s customer service, who replaced it for me and asked all sorts of salient questions about sweat, water, medications, and site location.
If it was a one time thing, this post wouldn’t have been written. The next sensor I inserted did the same thing, except it failed less than twelve hours after being in. Those three question marks mocked me. Dexcom was called again and in true amazing customer service form, there is another replacement sensor on its way. (Those things are expensive, yo.)
The newest sensor I put in yesterday hasn’t hiccuped, but I’m curious. Has anyone else has experienced this on again, off again hicupping Dexcom phenomenon? I began to worry that it was the transmitter battery flaking out on me, but it’s still reading OK. (The numbers could be better, but beggars can’t be choosers.)
For now, I have my digital Xanax back, it’s not hiccuping, and I’m happy.