Endocrinologists with T1D Dr. Edelman an Dr. Pettus air their diabetes grievances for festivus.
What are your diabetes grievances?
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Mine are docs who look at a CGM graph and jump right to medication changes without looking at or asking about the dosing/activity/food for that day.
Insurance companies limiting some docs to some plans but not others leaving all plans without adequate docs.
The DME magic 8 ball where instead of looking at your order the rep just randomly picks prescription/DWO/PA/insurance as the problem.
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My hand’s up for exercise. Every time I think I’ve got it dialed in… There are just so many factors to juggle. I want to go after lunch—knock down that post-prandial spike, yeah? Sounds good. So I have a sandwich (carbs) but under-bolus for it, planning for the aerobic exercise effect. Except, how much to under-bolus? How high is that spike going to get before I can drive to my bike route and get going? Oh, and don’t forget to switch your AID settings or stop delivery b/c you don’t want much IOB (not none, but not too much). What if something comes up and delays my departure, or an unexpected rain storm or whatever comes. Corrections are a thing, true, but I hate having to do that correct-and-wait, is it going down yet? No? More? Don’t overdo it! thing.
And then there are days like yesterday. Went out for brunch, allowed a bit more carbs than usual, did an extended bolus, but a big spike was following me through the day. Then various practicalities pushed my bike time to late afternoon. Skip the ride and just correct-correct-correct? NO, exercise is important, gotta keep that routine. So ok. I tend to generate some endogenous insulin starting around 4-5pm, but it was only 2:30 and I was still running about 160 when I started out. When I got to my riding route I saw that number was finally starting to tick down due to some combo of the extended bolus, my own metabolism, whatevs. So as I started my ride I ate the mini-chocolate chip cookie I take with me, just in case. I belatedly noticed that my pump had helpfully administered a correction earlier, oops. Should be okay though, still 140-ish when I got underway. I canceled delivery for the duration, plus that cookie, should be good. Halfway into my route, I see I’m dropping (I keep my phone in a handlebar rack so I can keep an eye on my BG). Dropping kind of a LOT, actually. Now under 90 with a down arrow—how did THAT happen. Already ate the emergency cookie but there’s another one in my car. Which is now a 5 mile ride away. Ok, well, don’t panic. Heading back, another mile and Jeez that line’s starting to look steep. Another mile and my iPhone just made that shattering-glass alert sound which is Dexcom’s way of saying: you’re in trouble boy. Still a mile or two shy of the car and the line has crossed 60 with a steep down arrow. Urgent low! Sez my pump. Urgent urgent! Says my phone. I’m ok, I say to myself, I can do 60s. What choice do I have anyway? 50s, OTOH, not so much but just keep pedaling, you’ll get there. 40s, definitely not so good. The flashbulb aftereffect—my personal warning signal—starting to interfere with my vision. Ok, this isn’t safe now, but what am I gonna do, stop and ask some random pedestrian for help? Aren’t you supposed to always bring something??? Yes, I DO bring a carb snack, but I already ATE it. Embarrassing. Pedal pedal pedal. Eyes on the bike-lane line. Not too far now. Got there at last, got my bike on the rack, got in and gobbled those extra Chips Ahoys. Called my wife–can’t drive for a bit, should be ok, just gotta wait it out. Can’t drive with the flashbulb effect.
Worst low I’ve had in months. I’m okay with ending up in the 70s at the end of a ride–what I more or less shoot for, because there’s always a bounce-back effect and so bottoming out around there means I’ll stabilize in the 90s and I’m happy. The flashbulb effect is NOT what I’m going for. So ok ok ok, I screwed up. You other T1s never have that problem DO you? As if. The voice in my head chirping Well you need to ALWAYS have something and if you don’t just don’t go and you know mornings are safer than afternoons and if your arrows are pointing down just turn around and blah blah blah. Yeah yeah, all that’s true in retrospect. But HAVING TO FACTOR all that IN in the first place is my grievance. Despite all the advances that make it easier to do, you’re still having to do this whole complicated algorithm with educated guesses that remain guesses even if educated and still can come right up and bite you in the ■■■.
I could go on about failed inset insertions and multiple pump failure points but that’s a grievance for another day. Today mine is exercise hypos.
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yeah. you captured it. glad you made it back to your car.
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My main two grievances are: that health care providers blame everything on my T1d/my T1D management. Example, I “took down” a fleeing robbery suspect (I was lunching with my partner, the suspect tossed his gun to the curb, my partner went for the gun and I turned myself into a missile and body-slammed the suspect. Bystanders helped me keep the suspect on the ground until patrol backup arrived to take the suspect in custody. My partner transported me to the ER since my shoulder was hurt. In the ER my bg was elevated (no duh) and I was scolded for not taking care of my T1D. My partner stood up for me.
Second is the assumption (where do they learn this?) that if someone is Dx’d with any type of D, they MUST be Dx’d with the following 3 co-morbidities: stupidity, laziness and a propensity to lie. I work very hard at my T1D mgt. My A1C’s and TIRs are great. And yet, I’ve been told it is impossible for someone like me to have such good labs (even to the point of being accused of asking my partner to submit his arm for the lab draws!). SO grateful for the hard copy reports from my pump and CGM.
A little respect and sense of partnership would be greatly appreciated.
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Wonderful post, artwoman. I am familiar with variations on these. It took years to break through on how my approach to our exercise component shifted over many years and varying life changes–from the fairly extreme exercise/rehearsal/performance schedules of a still-professional dancer to a new, more reserved and “quieter” approach of an older post-menopausal woman with multiple chronic ailments and achey old remnants of injuries. I did finally find a wonderful Internal Medicine Doc who I cling to now–hopefully for the rest of my life. I can see a specialist if I need to, as well as a dietician, but I have not felt the need. The last dietician I saw tried to lecture me on how much we needed carbs–I left, unceremoniously.
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I remember you! I too am a retired dancer. I think we need to meet in person - I am also in Portland. May I ask who your new internist is? Do he/she have a patient load with T1D’s? I am gonna look for a new Endo/Internist in the spring (I can’t change health care plans right now since my coverage is through my employer who is in San Diego. Once I find a new HCP, I will go on the health plan marketplace to sign up for a different plan) Of course I am concerned about changes to access for people like us with the new administration in the White House, so waiting until next enrollment will give me a better idea of what will be available to me. Thanks for your reply. Let’s meet in person after the holidays.
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Oh my. This is delightful–I needed a wee pick-me-up before bed. I got stalked by a Nasty once so I am cautious with my info, but we can surely start with some real-time emails! Now, it is past my bedtime, but we shall connect for sure…Fondly, Judith…Oh–Dr Gunasekaran and she’s a Kaiser Doctor. She is not a diabetes doc, but she helps me see whoever I need to see. My beloved, who also danced, worked in the sewers of Portland for the better part of a quarter century mostly so we could have good insurance in our dotage! I don’t know if she is taking new patients as she is semi-retired, but I’m willing to bet she could give you a great recommendation for someone else. It took me years to find her…More soon…
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Amazing, @artwoman. This is an amazing post.
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Or how about: “I thought only kids got that” and its many variants, such as “You’re too old to have Type 1.” Cuz guess what:
- Kids grow up
- No
My favorite is when it’s a trained medical professional offering this bit of wisdom, actually using the term “Type 1” while remaining oblivious that it was implemented to replace “juvenile” specifically because age is not an exclusionary criterion.
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This was the same for me - 3 that looked like they were anorexic, uber thin and seemed to have a hatred of food. Haven’t seen one since.
I wouldn’t mind seeing a certified diabetes educator but they are as scarce as endo’s here.
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I have been
Told that I must not have the “bad” kind of diabetes, because I don’t use a pump. Luckily the medical field seems to understand.
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And there is a “good” kind of diabetes?
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Not that I know of lol.
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I was allowed to take the 2week CDE course. It was nearly ALL PowerPoint slides, very rote, not “real world” and without details on what even ONE DAY – 24 hours can be like for T1 or its variations. I’ve lost faith in most, not all, CDEs. There is more and better information within this forum than what might come from a CDE.
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My thought, exactly. I have encountered that one, myself. It seems to be associated with the thought of giving oneself shots, as if that was somehow the worst possible thing in the universe???!
I have also heard that, “she must have it much worse than you do, because she has to wear a pump”. Actually I have heard that several times.
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The CDE training I’ve heard of requires an existing medical certification (registered nurse, registered dietician, pharmacist, etc) plus 1000+ hours of additional training. I don’t know what a two week course could prepare you for, but I’d never see someone with those qualifications.
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Yes for sure, Good point. I have the requisite credentials and did not want the cert; I just wanted to take the course to understand just what material was presented. So, no cert test, and no specialty clinical hours for my particular goal. This was quite a few years ago and, hopefully, the course material itself has improved … as I continue to find less than adequate knowledge in the CDE and Endo space. Thank you for your reply ~~ it helps to clarify.
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This has been an interesting thread to follow and read. I have thought about responding more than once, but I “tripped” over the word grievance. Of course, I share most, if not all of the grievances mentioned. I think, however, that it’s much healthier to understand the broader context of the grievance and to develop a course of action to mitigate the continuing wound.
I believe this perspective can soften the judgement that can often obscure any way of seeing a healthier path forward.
For instance, I believe that medical professionals like doctors and nurses are woefully unprepared to deal with patients with diabetes. They, for example, often miss the diagnosis of T1D simply by deliberately failing to do appropriate testing that could inform them and lead to a proper diagnosis. Tests like c-peptide which can reveal how much native insulin the patient is actually producing. This test can separate T2Ds from T1Ds.
Stories of attending physicians failing to immediately replace basal insulin to T1Ds in the hospital since their experience has only or primarily been with T2Ds. This can lead to diabetic ketoacidosis and death, yet is preventable.
Another test that physicians often miss is the insulin blood test. It is especially useful in the diagnosis of T2D. T2D, in the beginning, is marked by much higher than normal production of insulin. T1Ds (at diagnosis) can usually be separated from T2Ds since their blood insulin levels are close to zero and T2Ds are very high.
I realize that the context of modern medicine puts practitioners into a crucible of high expectations, large patient flows and little time with each patient. Add to that the constraining policies of corporate business practices that encumber medical professionals. I know this environment leads to burn-out and compromised decision making.
As I age, I realize that to the extent I can remain cognitively able, I can help these medical professionals to consider the fuller facts of the case. If I can act more diplomatic and kind, I have a better chance to break through with the wisdom and knowledge of living 40+ years with T1D.
I also know that a well informed advocate can help the doctors make a good decision about my care. It is up to me to train my helpers so that they can step in and represent my medical interests when I am unable and an over-worked burnt out doctor is trying to manage my case.
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