I also have a pattern with endocrinologist visits. I go, hopeful, sit in the waiting room, answer the questions, fill out the forms, meet the doc, spend x amount of time discussing my ‘situation,’ and go home. This is repeated until I burnout, want nothing to do with being responsible, committed, invested, or healthier in any way, and then the meetings change to me waiting for them to figure out how to help a person in burnout. Usually, this ends the relationship with me and the endo. The endo will react with some variation of disdain or befuddlement, and I lose interest, skip a few appointments, and then just find someone new when I’m out of burnout.
My last endo situation was better. I got to burnout, and instead of the aforementioned reactions, I was met with validation, patience, and the willingness to work with me in my depressed and lackluster state. This particular relationship lasted for several years. In hindsight, I think it was hard for other doctors to see me, rather than the typical burnout. Maybe? My burnouts don’t lead me to not check my sugar, not take my insulin or meds, or not go to work. I just get tired of being meticulous all the time. So I ‘go through the motions.’ The areas that suffer are usually just that I eat less carefully (and even ‘less carefully’ still means something slight, by comparison- like, I have pizza a few nights a week. OH NOES), and I don’t work out regularly for a few months. As in, I’ll average maybe once a week instead of 6 days a week. Seriously, this is what burnout is for me. I think doctors saw my reluctance to change the pattern, and figured I wasn’t worth helping. Maybe they had a point; if I don’t know how to get out of burnout, and nothing they are telling me is getting me there, then why should they bother?
Let’s clarify a bit more. For the last five years, my labs (bloodwork) have been PRISTINE. As in, fucking beautiful. My A1C topped out about a year ago at 6.7, but generally stayed between 6.1 and 6.4. I’d love to get a 5 in there, but I’m not stressed about it. Thyroid levels are fine, cholesterols were mostly ok (I’ll get to that arena in a bit) but generally well under control, and liver and kidneys bidness is fine. The docs like to tweak. They like to constantly make things ‘better.’ Which is a fantastic way to do your job. What most of them don’t understand is that ‘better’ for a chronic illness that is well controlled does not mean ‘let’s give you more shit to do on a daily basis,’ or even ‘let’s show you all the teeny tiny little things that should be better and see how you feel about it,’ it means: ‘let’s give you better ways to do the shit you already have to do so you feel more functional and less burdened.’
My last endo was fantastic about that bit. The issue arose when we got to cholesterol. I used to be totally fine with keeping my cholesterol down: heart disease runs in my family on both sides, and I have the ‘beetus. So yeah, I’m fucking scared. I get that the risks/odds for me are ridiculous. So when they wanted to put me on an assload of simvastatin, I was all, ‘yeah, fuck yeah, put me on it.’ And so for awhile, my cholesterol numbers were fine. Then I started reading a lot about how cholesterol works, and what statins are, and basically, I don’t want to be on them. I tried to do it naturally – I took all the supplements, I did the cardio and strength training, I did the eating crazy well, I recorded everything (have I mentioned that when I’m not in burnout, I’m a scalding ball of obsessive compulsive, hyper researched, crazy?), and managed to get everything perfect except the LDLs, which were within 10 points of fine for a non-diabetic.
I’m not sure the statin issue can ever be well resolved with an endo. Granted, I wasn’t honest with mine: I went off the statins on my own, without consulting him or even telling him I was going to do it, which was disrespectful. But I also knew he was very into drug benefits, and I wanted to avoid making things uncomfortable. Whatever, I know that’s a lame excuse. Ok, I fucked up. Moving on; most doctors are All For the statins. And there aren’t any drugs that are just anti-inflammatory for heart/circulation issues. Or, at least, this is what I’m told. Either way, this led me to not wanting to have the same awkward, unresolved, discussion every time, accompanied by my ongoing weight issues, and so basically, it’s time for another change.
Does anyone not have a weight issue? I’m asking this authentically. I mean, what the fuck. Most people fluctuate, right? Hubs fluctuates by a pound or so every week. I fluctuate by the tens of pounds. Not kidding. If I skip working out for a week, my total daily dose (TDD) of insulin nearly doubles, and I gain close to ten pounds. I’ve mentioned to doctors that I think I have both Type 1 and Type 2, and that’s why I’m so exercise sensitive, but they all dismissed it because I’m generally on so little insulin (compared to T2s, who require hundreds of units per day – seriously these are the comparisons they make). Which is fair, I guess. ??
For some perspective, I have been in the same size range for the last five years. As in, I lost a bunch of weight, and despite fluctuations, have managed to balance out in sum total. And I never asked for help with the weight stuff. Not a single time, even before the weight loss. I firmly believe that hard work gets it done. If I am not at a happy weight place, I just need to work harder, try different things, be more consistent, keep pushing. The docs hear weight issues, and want to put me on synthroid (even though my thyroid levels are fine), they want me to take antidepressants so my mood is better and I have more energy (energy is not an issue for me. I don’t know what to tell these people anymore. I go in there to talk about my disease, and it bums me out. I can’t tell them that I get tired of dealing with it, because then I need antidepressants. I’m out of different words and phrasings), they want me to rehaul my diet (these people, thus far, know less about food than I do, all of them. This is not ego or an exaggeration; it’s fact. When I tell them I have eaten badly, I know exactly what was bad and why, as well as how much and exactly how to fix it-like don’t have so many pizza binges, while they are still trying to figure out if I need more whole grains or if I can continue to do smoothies made with raw milk and organic fruits), they want me to do all sorts of things.
The issue with the endo is the general approach, I think. It’s not an issue of what I do or don’t do. It’s that the issue is always there. My problems aren’t that I don’t know what’s wrong; it’s that it’s always wrong. No matter how motivated I am, I can’t keep everything perfectly controlled all the time. Something is always wrong. Even the perfectly positive endo appointments end after awhile; this disease does not enable perpetually good results. You can get ‘mostly good,’ ‘largely successful,’ or even ‘rarely off,’ but you will never get ‘healthy.’ And that’s the problem. Doctors want you to be healthy. And having a disease contradicts that before you’ve even shown them anything about yourself. It’s a tough relationship. And after twenty odd years of this, it’s hard to keep going back to (eventually) hear the same thing.
But (aaaand we’re back to hopeful) my next one is a young dude with T1. It will be my first time working with someone who also has the disease – should be fun and interesting, at the least. He’s also thirty. Which means I’m officially older than my specialists. This is not a milestone that pleases me. If I get through it, there will be new shoes on the other side. Repeat as needed.