I don't feel human

Mental and Emotional Wellness
1

So, I need a place to vent.

I’ve been T1D for almost four years now (diagnosed two days before I turned 21 – 12.21.2011), and I’ve adjusted and coped with a lot. I have good and bad days. I’m having one of those bad days.

My endo persists that I have good control, and that I might still be honeymooning because I have good numbers, but I still beat myself up from going from 5.7% A1C to 6.5% (I have an appointment in two weeks, we’ll see what it’ll be like then). My glucose averages aren’t as steady or good as they used to be, and I’ve gone up 5-6 units in the last six months. Granted, I work as a freelance designer, so I’m stressed all the time about finding work, and then working crazy hours.

My regimen is literally 17 units of basal insulin per day (formerly Lantus, switched to Toujeo). I correct with 1/2 unit of Humolog if it hits 200. That’s it. No mealtime insulin. I exercise when I can.

What has that wrought me? I don’t eat that many carbs, which isn’t necessarily a bad thing, but I don’t eat nearly as much as I want to because I’m terrified to eat anything more than 10-15g carbs per meal. I was a fruit fiend before I was diagnosed, now I’ll quietly panic after eating a sliver of an apple in my salad, or decline all sides with my omelette platter at IHOP.

Why do I not take multiple injections? I’m sensitive to short-acting, and had a few scary instances using it. Maybe I haven’t been properly trained to use SAI either. I tried experimenting at Thanksgiving and I couldn’t understand it, and I ended up feeling sick and depressed.

I’ve talked to my doctors about pumps or affrezza or what have you, but they insist I don’t need it for how ‘good’ my numbers are.

I feel sick off and on, because I don’t think I’m eating right/enough. Paired with my hypothyroid, it’s hard for me to keep up with my active fiancé, and that breaks my heart.

As you can imagine, being this strict is exhausting not only for my body, but socially. Since moving to the big city to pursue my career, I began talking to my coworkers about my condition, feeling it was necessary to explain why I don’t want to eat a cupcake or partake in yogurt parfait Fridays. Most friends understood, other people would still crack diabetes jokes when I’m in earshot; or a friend would try to understand, but then alienate me from food socials because “they know I can’t eat [x]”.

Another example, my soon-to-be in-laws only ever ask me, “How’s your diabetes?”, as if that’s ever going to change, or that it’s the primary part of my identity. I know they mean well, but they’ve disrespected my wishes not to ask about my health on more than one occasion. It’s as if ‘diabetes’ is written on my forehead and they can’t see past that…

Hell, I hate the words ‘diabetes’ and ‘sugar’ IMMENSELY. I grind my teeth when I hear them.

Basically, the combination of eating terribly and being treated like a fragile lamb has inhibited me. I thought divulging information about my illnesses would help me cope with my diagnosis, but I find myself more and more wishing I never said anything to anyone at all. My fiancé is also away on a contract job for several months (possibly more than we anticipated), and he’s my most trusted lifeline. I feel alone in this well of anger, insulin, and needles.

I don’t really need advice as I need someone to understand where I’m coming from. I haven’t truly felt like myself since I first heard from my doctor, “You have diabetes,” right before Christmas those few years ago. ):

TL;DR I feel like shxt and people are shxt.

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You’ve come to the right place for support, sweetie. I’m T2, but when I was first dx in 2007, I lived in a perpetual state of rage and despair and disgust with those who didn’t “get it”. The regimen is ceaseless. Vigilance, never-ending. That’s the biggie they didn’t get…

Isolation does make it worse. I’m sorry your fiancée is not accessible. Do try to talk regularly and keep educating him—our loved ones also need to engage with a steep learning curve.

Moderating carb intake to some degree is something we all need to do and there are lots of ways to make that tolerable. It’s late for me now, but I’ll check in tomorrow to be sure you have found more support—and from T1s like yourself…You are N OT alone, my dear!!!..

Blessings…Judith in Portland

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You came to the right place
We are all here to help each other
I think you need a new doctor
A pump would help you live a almost normal life
With only humalog
Then you can eat a healthy diet per blood sugar
T 1D since 1936
Good luck
Shoshana

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There is a great deal to unpack in your statements. First, I am glad you found this place we certainly do get it. ,I have been type 1 for 41 years.

Here is the thing about diabetes, it is a grind… We do not magically get better, there is no drug to take this all away. And that means every day is a series of little decisions that add up to something larger. There is nothing I like about that.

I wish I could say it will get better, it will not. If you are fortunate you can keep this run going as long as possible. But the truth is it likely will get worse not better.

So what should we do about it? I have three suggestions:

  1. Relax a little. your future in laws are concerned, and they lack information so help everyone and talk with them about diabetes. I am almost certain they care about you

2 imbalance happens. Obviously, no one likes it, but after many years my blood sugar swings between the mid 200’s to 50. I hate those swings, but I treat each one and live until life gets interrupted. A little high or low is part of the this thing.

  1. Get used to telling not asking your docs. My doc knows if I ask about something I have already out researcher him and I know what I want. yes he is the prescriber and no i cannot .just get things, but me does at least listen to me and makes a decision base down hat i want and his medical judgement. That reduces our time and speed up our conversation.

I wish you the best of luck. But you can do this, what other choice do we have?

rick

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It sounds like your emotions are a very human reaction to having diabetes which, in general, sucks and is a huge pain in the butt. Balancing things is very challenging and, even if you’re able to avoid taking short-term insulin with dietary strategies, can lead to a pretty high degree of stress, dealing with all of the things that have to be done. On top of having jobs which, most of the time, can also be pretty stressful too, particularly in your situation, hunting down and then producing projects for clients.

I would think that your plan would still be MDI as, if you hit 200, you have a shot, less shots than folks pregaming for a buffet or whatever but shots nonetheless?

I wonder if maybe you need to get a second opinion on the pump, from another doctor who’s not an endork? It’s not always advertised as a “benefit” of pumping but I found that with a pump, I was much less stressed out about diabetes than I had been. Some of that may be that my regimen was “home brewed” MDI that, at times was really messy and, in retrospect, perhaps dangerous, but the pump 1) keeps track of things much better than I was able to do, so you have a log you can look back at. One test at a time is sort of random but the patterns than came out of pump reports allowed me to fine tune things 2) microdosing is much easier and more precise on a pump. I was always thinking “hmm, should the meniscus of the shot be over or under the line…” to add some “fine” to my MDI efforts but I was not really organized about it. With a pump, if you’re having an omelette and figure maybe 20G of protein, you can take enough insulin (probably not too much?) to cover the glucogenesis and spread the dose out to match it up nicely with the food. And if it doesn’t quite work, file it and see what happens with 21 or 19G of carbs the next time? That sort of fine tuning isn’t necessary but it becomes much more possible with a pump. 3) you can “untake” basal by turning your basal down. If there’s highs, you just correct them but if you have a large project, are pulling an all-nighter and running low, a small snack can be paired with turning your basal down.

The things that jump out of your story are 1) that you don’t feel well and 2) that the doctor you’re seeing a) looks only at numbers and b) flat out rejected your request for a pump. My doctors have always been very supportive of pumps. Another thing I’ve noticed is how many positive comments I’ve gotten from specialists. Being older, and having adventures, I’ve had some non-D things but, whenever I’ve discussed diabetes with non-endo medical folks, they always seem very happy to hear that I have a pump.

Sorry to be a total pump fanboy but I don’t like doctors who don’t support patients who want them.

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Well and truly ranted, Errie, one that I’m sure we all can relate to!

You’re up against two things that are really common and hard to get a grip on. One is, like you say,

It’s a condition I have, not a thing that I AM. We’re with you in that struggle, because we al experience it. I don’t know why people feel entitled to probe people with T1 like this but they do. Probably not helpful to come back with “Oh it’s fine and by the way how’s that urinary tract infection?” or the equivalent, but imagining it may help to get the whole thing down to where you can just roll your eyes at it.

The other one is something that really pisses me off, though, and it’s really just a variant on the first:

Right. Because I don’t HAVE a condition, I AM that condition, right?

“Your numbers are fine, let’s leave well enough alone!” is, I believe, one of the most damaging and infuriating reactions from the medicos. It’s not universal but my god is it widespread, particularly among non-specialist PCPs, though it hasn’t been rooted out of endocrinologist culture either. It raises my hackles because I endured at least 10 years too long on the primitive and life-constricting regime of R/NPH (“Eat Now or DIE!”), despite repeatedly asking my (non-specialist) PCP about the MDI alternative I knew some people were on. The point, dear doctors, is not just whether my numbers are ok, but whether I, ME, the effing PATIENT am ok. Is this treatment working for you as a human being, or are there ways we could get the same numbers and still allow you to function like a person who HAS a condition, as opposed to treating you as if your entire being were that 6.5 they see on their blood work result sheet. You don’t have to accept that, and most doctors, harried and harassed as they are, will respond positively if you’re clear enough about it. Because those numbers are not going to STAY ok if the regime that’s getting you there is also making a mess of your life in ways that it doesn’t have to.

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Dang… thank you so much everyone. :cry:
I woke up feeling depressed still, but I didn’t expect to have any replies in my inbox this morning, and it brought me to tears with all your kind words and insight.

Maybe I’ll push for Afrezza the next time I go to my endo, or actually learn how to use my Humolog besides correcting high BGs. I’m overdue for new cartridges anyway.
I’ve debated on getting a pump for a while, but I don’t know which is the best one or if it’ll be worth it for me (the latter statement might be the doctor talking). I request pamphlets and get calls from pump reps, but I’ve never gone through with getting one because I’m afraid of how it will feel on me, and how expensive it might be…

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You and I were diagnosed around the same time. I can relate. The ways you describe feeling are what it means to be human, not the opposite. It sounds like you may be someone who would benefit a lot from a pump or a more active MDI program because of your high bolus sensitivity… A finer tuned way to manage like that might help you eat a little more balanced diet and still stay in control. I use MDI and Afrezza. I had good control with MDI, the addition of Afrezza has helped me a lot with the psychological burdens… You can PM me any time.

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First off I’m really sorry to hear that you feel that way. It’s a horrible place to be in for anybody. I can’t even begin to think what it feels like but I know where you’re coming from and I know that sometimes it seems that nobody gets it. What I think is best in this situation is to talk to someone about it. If your endocrinologist is not getting it or not taking it seriously then maybe it’s time for a new one. You might also find it helpful to talk to a counselor, get you through this hard time.

Personally, knowing something to be true is very reassuring to me. If he says you’re honeymooning, get a c-peptide. Maybe you’re just very sensitive to insulin, maybe not.

Fast acting insulin truly is a miracle, if you know how to work it. Go to your endocrinologist prepared, it’ll support your cause. I know there are a lot of different options out there, with very small increments. Hell, even push for a pump if you want one. I’m with AcidRock on this one. I kept getting rejected for two years before my doctors finally caved in. Maybe it’s for you, maybe it’s not. The point is, you’ll never know if you never try.

Hope you feel better.

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I feel you. Myself and soooo many others understand completely what you are going through. I promise I am always available to talk/vent to, it’s important to have someone to talk to who fully understands what you are going through.

You’ve come to the right place for understanding and support…and even education if you ever need it. :slight_smile:

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I agree that there is nothing quite so scary as a low low…

What really helped me was to get a constant glucose monitor so that I could access my bg trends…catching lows before they got too deep, if you know what I mean :wink:

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Supposed Type 1 four years after diagnosis still relying only on basal insulin (and the occasional tiny post-meal bolus) yet maintaining a mid-6s A1c? Sounds like a candidate for one of the monogenetic diabetes variants, perhaps MODY-2.

If you don’t mind our playing doctor, what’s your morning fasting glucose and how do your oral glucose tolerance results look? Or if you haven’t had the latter, how high do your numbers spike when you eat a moderate amount of carbs? Have you had your antibodies checked? Did basal insulin improve your numbers much?

It’s of course possible you’re simply a late, slow-onset immune-mediated Type 1, but if I had to guess, I’ll bet if you went completely off insulin after a few days your numbers wouldn’t look very different, and your next A1c wouldn’t budge much, either. Maybe I’m totally off-base, but having just gone through the experience of reversing a misdiagnosis thirteen years ago, just glancing at your description made my (figurative) ears perk up.

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I had my antibodies checked at diagnosis ensuring that I was type 1, but I had doctors speculate that my condition behaves like Type 1.5. My first endo even put me on Prandin alongside Lantus, but I stopped using Prandin because it was too much for how little I was eating. I sometimes think how it’d work for me now.

As for numbers, the highest I’ve ever seen my BG go up was to 364 after a spoonful of Nutella (starving art student in her first couple months of diagnosis… I learned from it quickly). Nowadays, I’ll maybe hit 200 every couple weeks after indulging in one too snacks. I do rely on Toujeo/basal to keep me even… I’ve had the same two 3ml Humalog vials since January, if that’s any indication how often I use short-acting.

This is what the last 12 hours has been for me:

11903526_10152965000256962_458464272_n.jpg960×540 34.3 KB

Even if I might have MODY-2, how does treatment change?

EDIT My A1C at diagnosis was 8%.

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My hunch was wrong, at least with regard to MODY-2. The diagnosis A1c of 8, improving to 5.7, suggests more typical diabetes mechanisms. Sounds like you also tested positive for antibodies (interesting that in the subsequent four years you seem to have retained a lot of endogenous insulin production capability). I guess by Type 1.5 you mean you also present with some insulin resistance. Hitting 364 after only one spoonful of Nutella! Yet you somehow keep your BGs pretty in check without any mealtime bolus insulin. Sounds like the key for you is learning to integrate bolus insulin, ideally with a pump because of the microdosing capability, and then integrating some more carbs into your diet.