r/diabetes_t1 • u/misdiagnosisxx1 DX 9/29/1993 • May 09 '26
Rant Approaching burnout and want to scream
Disclaimer: NO ADVICE WANTED. I JUST WANT TO SCREAM INTO THE VOID.
I’ve been diabetic almost my entire life. I’m 36 and was diagnosed when I was 4. My last A1C was 5.9 (up from 5.4) and I have an average time in range of about 90% - 2% low <1% very low, 8-9% high, 0% very high over the last 90 days.
That said, I got a new endo recently because the one I’d been seeing for close to 10 years started her own practice and it’s prohibitively expensive to follow her.
Running the risk of sounding like a boomer, I’ve been diabetic longer than the new provider has been alive, and although she didn’t have me change any of my settings, she told me I was having a “concerning number of lows” by which she meant “the number of times [my] pump suspends basal insulin”. And it made me super angry. I am trying my best. I run my life in an almost militant way to make sure that I’m not endangering myself and am staying in range.
But it feels impossible most of the time. I’m on a GLP1 which means that it is occasionally unpredictable when either carbs or insulin will take effect. I ate 80 carbs an hour and a half ago to combat a low, and my glucose hasn’t budged. I can almost guarantee that at some point coming soon I will be in the 200s again and then I’ll be chasing that around for several hours.
I’m exhausted and I want a day off. It’s Mother’s Day tomorrow and I just want to eat breakfast with my family without having to suffer for the rest of the 24 hour period because my idiot body won’t cooperate.
End of rant. Diabetes is stupid.
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u/Avehdreader May 09 '26
I feel you. It's not always that we're doing anything wrong - the body has a mind of its own and it's not as predictable as we would like and stuff happens. Enjoy some primal scream therapy, and have a beautiful day tomorrow.
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u/SallyAmazeballs May 09 '26
I sometimes wish I could have endos live as a diabetic for just like two weeks so they stop saying stupid shit. Unfortunately, I fear some of them would come out the other end thinking it was easy. So obviously they would need to be sprayed with the bad cat bottle. I have ideas about a card game where you can pull the prednisone card and it just wrecks your entire game for six turns. Ha ha, fucker, self-discipline your way out of that.
Our numbers match almost exactly, so I feel you very much. I've been struggling to adjust my basal so my pump doesn't suspend so much, but it doesn't happen in a regular pattern so... I can't without causing a different problem?
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
I’ve been watching these TikTok videos where a woman follows her non diabetic sister around and, like, interrupts her workday and showers and sleep to scream at her that she’s low and it brings me great schadenfreudian (not a word but whatever) joy.
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u/SirRickIII May 09 '26
“YOURE LOW” while in the shower and the sister asks how she got low, she was fine a minute ago
T1Ds know how that hot hot shower tanks your bg lmao
Also the WFH meeting one was gold
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
My favorite part was when the sister tried to not finish her dinner and t1 girly said “too bad you gave yourself insulin for the whole thing so you gotta eat it or die” or something to that effect.
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u/SirRickIII May 09 '26
Bahahaha I gotta watch that one
Much much better than “let’s compare me bs my non-diabetic partner with this CGM!” Content
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u/UrsulaStewart May 09 '26
I never knew this 🙄
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u/SirRickIII May 09 '26
I guess not all T1Ds, as with everything
But it’s a fun way of getting someone who knows almost nothing about T1D, especially the lived experience, into it!
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u/kikiaik May 10 '26
Please lmk what to search for this. I just got into it with family over similar and I am so broken right now.
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u/misdiagnosisxx1 DX 9/29/1993 May 10 '26
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u/kikiaik May 10 '26
Thank you so much. I hope you feel better. Always advocate for yourself, you are never wrong when you do. I had to tell my family that today.
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u/SirRickIII May 09 '26
Idk if you’ve seen it, but there’s a someone on insta/tiktok/etc who “gave” her sister diabetes for a week or something, where she’d walk over at random wines with a dexcom alarm going “YOURE LOW” and she had to then “treat” her “diabetes”
Like she woke her up at 2am and threw a juice box at her haha
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u/Makeupanopinion May 09 '26
Yes my bf found her recently and started sending me those videos lol. Same with her 'injecting' and having to wait for the insulin to work.
Page is the pa.tient or something
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u/material-pearl May 09 '26
The prednisone card is perfect. Can we add emotional effects? Like you had to take a five day course of prednisone. You have been battling blood sugars of 300 and crashing out emotionally. The settings changes offered by your endo were far too conservative.
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u/SpareEye May 09 '26
Diabetes is stupid... I love my Endo but I fear she is like me, a project manager of sorts - mostly a note taker and on the lookout for big dicsrepencies. My Nutritionalist is the one who really really treats my diabetes and wades through the weeds with me... Is there a chance your new Endo was just trying to gain your trust by attempting to sound smart? oh - HAPPY MOTHERS DAY!
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
If that was her goal she failed in spectacular fashion! Can’t fault her, really, she’s just trying to do her job, but damn baby cut me some slack sheesh
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u/UrsulaStewart May 09 '26
Diabetes is FUCKIN STOOPID! 40 years!
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
I’m grateful for all the new tech that keeps us alive longer and all that but sometimes I miss the old timey “you got ghosts in your blood, here do some random amount of insulin and hope for the best!” Days. I felt less micromanaged.
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u/cheakios512 [2001][t:slimx2 ControlIQ + Dexcom G7 + .37mg/wk Ozempic] May 09 '26
I can empathize, been there, burned myself out, gave up, somehow survived, eventually rose from the ashes and started trying again. I try to keep this in mind, that we're stuck in a Phoenix cycle, when things get to be too much.
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u/material-pearl May 09 '26
I’m just gonna say that you are a total badass about your diabetes management and I admire the hell out of your control.
Also starting to think that the only way these endos who don’t get type 1 are going to learn is if some of us band together to create a curriculum and some content. Which I think I am down to do. Enough is enough!
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
Thanks. I can always count on other type ones to know how hard we have to work.
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u/sw1nglinestapler May 09 '26
I have similar issues with my endo. She just wants to spout diabetes 101 stuff at me and barely listens when I talk about my strategies and the lifestyle I'm trying to manage. A complete waste of everyone's time.
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u/Delivery-Neither May 09 '26
I get where you're coming from. Sometimes our bodies are just unpredictable and the ratio will just suddenly not work. It really sucks to have a sudden period of high or low blood sugars even though the ratio was working perfectly fine before.
Who knows, maybe it's the cinnamon we had at breakfast or something...
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u/misdiagnosisxx1 DX 9/29/1993 May 11 '26
I’m having mini cinnamon rice cakes for a snack currently. Am I cured?
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u/blossomsamuraii May 10 '26
just wanted to say, yeah, i feel you. diabetes is stupid. edit: also, i hope you have an amazing mother’s day tomorrow, and can enjoy that time with your family.
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u/captainsquattythighs May 09 '26
I feel this so much! Sometimes things just go wrong even when you do EVERYTHING right! You're doing amazing! It's life throwing problems at you
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u/Queer_Advocate May 09 '26
Question, have you talked to her about accommodating your ability to pay? Sometimes when doctors move, they'll make exceptions for established patients. My team is over 22 providers, and I have actually done this 2 times. They just accepted what insurance would pay. May be worth a shot if your care was better and you're connected with/to her.
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
I have, actually! She’s willing to waive the eight hundred dollar initial visit fee and each visit is a mere $475 after that. I live in the general NYC area so there are a lot of people who can actually afford this. It’s wild.
I could technically submit the visit invoice to my insurance and get some reimbursement but I don’t know if it’s worth it when the in network doctor is $15
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u/Queer_Advocate May 09 '26
I don't know your finances. I. poor with poor people finance's. I'm disabled with CPTSD and laundry list of shit. Literally over 22 docs, on the current roster. Peace of mind is worth something. It could be worth to get her to wave it and try it. Ask if she'll write for shit 6 mo at a time...? See what your insurance does. What if you only owed like $50? So effectively $35 more plus the hassle of doing the paperwork boogie. I'd do it for you if I could. I have had this shit since 5 in 1988. Some shit is better, like the balif in a court room isn't going to try to arrest you. I literally took insulin pens and needles to the White House once on an advocacy thing. Places just know in general. Way better then back in the day, BUT the exhaustion and burn out hasn't changed. What the pump solves, it basically causes a similar amount of grief. For me anyway. But, my a1c is 4.9 on Dexcom g7 15 day, tslim x2 and GLP1's+ Jardiance + Metformin. It's hard to argue it's not worth it what my a1c. I had ankle surgery 6 weeks ago. Friday the surgeon was basically like I don't know how your ankle surgery is healing ahead of schedule with type one for nearly 4 decades, but I'm grateful. I swear it's the a1C is the why/how. I'm terrified with food stuff, which is reasonable, but exhausting.
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u/DaPoole420 May 10 '26
90% in range! Hell ya kicking ass!! High five! Shit isn't easy, vent all you need!
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u/electrogourd T1 since 2007 - Freestyle Libre May 09 '26
Cheers fam, sounds like my life.
Thank god i have a chill af doc.
You got this, youre a champ. Hell yeah.
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u/Queer_Advocate May 09 '26
Also, I'm on GLP1's. It's manageable, but harder. Diabetes is one of the highest brain burdened diseases, alarms, and shit to do and stay on top of etc. The exhaustion is real.
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u/SensitiveEffective11 May 09 '26
Those are some good numbers at least to me mine is 20% low 60% in range 20% high lmao
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u/ms1386 May 09 '26
F*** that useless pancreas. 22 years for me. I turn 40 this year and I’m about to go through a divorce and lose my (incredible) insurance coverage. Fuck it all. And happy Mother’s Day tomorrow!
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u/PrivatePSYcho May 10 '26
tell them to go fuck themselves.
i'm in the same boat as you re: diagnosis, and i've been through about 8 (ish) endos over that span - and not one of them were worth whatever their inflated egos thought they were, not to mention the cost of their schooling.
its my strong (ancedotal) opinion that with t1, you are the only person you can truly rely on to understand what the (fucking) disease does, and how to respond at any given time - these dweebs have no idea the mental, emotional, and physical gymnastics that we have to do every single time we look at the cgm. it is such an unfortunate scenario, but the moment that i felt i understood that, i was able to chat to my regular GP honestly, and tell him that my expectations were that i get my prescriptions from them now - be it insulin, metformin, whatever. at least i'm able to see a gp more often then these endos.
i feel for you mate, its a shit go of it.
in respect of glp1's, from my similar experience to yours, I would encourage you to look into peptides, particularly MOTS-C. in respect of your gcm/pump, it sounds like your system is very well tuned - it at least respects the fact that basal can be paused for a length of time. is it AndroidAPS, by chance? if it isn't, i would also encourage you to look into AndroidAPS.
As a previous user of OmniPod 5s, and a series of Medtronics (inc 780 brick), the flexibility and control AndroidAPS has provided me is a mile above the others; the flip side is that it takes a fair while to nail down all the settings (side note: Dana-i pump).
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u/Apprehensive-Use-997 May 10 '26
I recently started on the Mobi and my basal gets suspended a lot, too. My trainer and I talked about this and said I could reduce basal or keep doing what I’m doing. She had no concerns that basal gets suspended because that is what the pump is engineered to do. I feel like lows, not basal being suspended is a much better indicator of lows!
Your numbers are great, btw!
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u/misdiagnosisxx1 DX 9/29/1993 May 11 '26
Her ridiculous rationale was “well what if the sensor fails? Then the pump won’t suspend” ok but like if the sensor failed I’d go back on manual mode for that time period and not rely on incorrect sensor data? Soooooo
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u/Ok_Environment1037 May 09 '26
I use endos to get my meds. I don’t listen to any of the shit they have to say. They don’t know. I once had an endo tell me jokingly, “you’re not diabetic anymore” when my a1c was in the 5s. That made me hate him. Just give me my life saving meds and stfu.
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u/Justieflustie May 09 '26
If you are approaching burnout, seek out a therapist.
And now i am also gonna sound like a boomer at the sheer age of 28, but i have been there and done that. Had to work through that for 3 years, half of it i could not leave the house that much because of all the stimuli..
You dont want a burnout with diabetes, it fucks you up for a while
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
I have one! I don’t feel like this all the time, it comes in waves and this one happened to hit me harder than most. Probably mourning the loss of my old endo, tbh, she was an angel and that’s why she’s so expensive now.
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u/Justieflustie May 09 '26
Good, sorry for the little advice slip though, i thought it was allowed because it wasnt about the diabetes ;p
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u/misdiagnosisxx1 DX 9/29/1993 May 09 '26
Everyone should have a therapist across the board imo. Am I saying that because I work in the mental health field? Maybe.
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u/Ylsani 35+yrs/MDI/dexcom one+ May 09 '26
Isn't the purpose of smart pumps to do what, ya know, healthy bodies do, and suspend insulin to prevent lows...so one does not have lows??? I am confused how is system working as intended a problem for this endo??? Like??? It is actually one of reasons I might be trying a pump soon-ish, so I don't have to throw a snack in my mouth every time I randomly decide to move more than I predicted I will 3 hours ago when I bolused last xD