Burned Out

I didn’t put months into learning how to get maximum benefit from CIQ. I spent hours over two months. I wasted a lot of time worrying over whether I knew what I was doing and trying to figure out how to get better control over my diabetes while I still had the ability to do so.

Most people don’t need to know how a car works to drive one. Because I think like an engineer I’m reluctant to do things without understanding what I’m doing, but also feel compelled to fix things that aren’t working right. I’m not satisfied to just use something without knowing how it works. So I become overeducated in every technology I use. “Burned out” doesn’t need to, but should learn the few things that are needed to use a pump most effectively. .

It would have taken me less time had I known what to do instead of “rediscovering the pump” with practically no help or guidance. I found the books that would have helped - after I’d already done the work. They might have either cut my effort in half or confused me, because they have different methodologies and nomenclature.

It took me two weeks to adjust my diet after starting to wear CGMs. It isn’t rocket science to see a spike after a breakfast I eat almost every day and figure out what in the meal made it. I spent a few hours one day going over every meal menu I ate, and recording the amounts, carbs and fat. I’m still using the meal menus I created then as a basis. (I ate #2 breakfast this morning, 42 g of carbs.)

At this point I knew my CF, but my ICR was based on Novolin and depleted injection sites. I was 84% TIR using “lent” equipment. My EAG dropped from 6.7 to 6.4.

I spent a weekend doing research to convince myself that a pump added to a CGM would be worth the extra effort, and that the Tandem pump and Dexcom CGM were the best currently available. It took more effort to get a fasting BG and c-peptide test result that my endo was willing to submit than all the effort since.

Before I got my pump my lab tested A1C had dropped from 6.7 to 5.9.

From the day I started with a Tandem pump and Basal IQ until I got Control IQ was 6 weeks, but I spent NO additional time adjusting my diet.

I just looked at each past day’s graph to estimate whether my basal rate for the meal interval I was measuring wa OK, high or low and adjusting it no more than 10%. That took 5 minutes a day for 3 days when that meal was typical. That totaled an hour spread over 2 weeks. Then I spent the same amount of time adjusting my ICRs for each meal interval. These are the numbers needed to manually control an insulin pump effectively. I haven’t had a below-70 low since I started using a pump and Basal IQ wasn’t responsible.

I spent much more time learning where my good sites are and how to troubleshoot whether the CGM site and infusion sites were good than I did figuring out the numbers to use to control a pump well.

When the Tandem repo loaded CIQ on my pump my TIR for the previous two weeks was 94% with no lows., That included 4 days of unusually hot weather with me doing heavy labor, and days of site problems.

I’ve had CIQ now for a week and TIR jumped to 98%. That’s a 15% improvement for less than a day of total time spent to systematically tweak my settings.

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Good job! Happy you’ve had so much success.

Take care,

Maurie

@Erbsnspices

I hear you and I understand where you are coming from. Being diagnosed in your 20s is so hard. I really think it’s one of the hardest times because you’re not a kid who has your parents to still help train you by providing your meal prep at home and giving you healthier alternative snacks so you learn it’s not horrible and how to navigate. You’re also still in the age group where you’re socially active with friends/peers and man the pressure is high there too. When everyone goes out and people are carb loading and there you are wanting to order just as freely as they are - and you feel like nothing at all is “diabetic friendly!”

I was diagnosed when I was right around your age (I will turn 46 in 2 weeks). I can tell you that it is a mindset change you need to go through - just like everything it’s a process.

One of the things it made me do is take a really hard look at how much processed crap I was just mindlessly eating before. I can still have a treat, but it’s done much more mindfully now. If I want a serving of ice cream, it’s just that, a serving. No more loading up a bowl with ice cream or dropping a scoop or two in a big glass of Coke. (I never was a big soda drinker and all of my tea has always been unsweetened, but my mom does both of these and she is diabetic too and these are hard lines she will not give up. - Everyone is different. You have to find what you can and can’t do for yourself and what trades you can make.)

I also often pick lower-sugar options (like banana “mock ice cream”) or, now, an “ice cream” that is low carb/keto (so often times has more protein too)/etc.

I make my own treats so I am acutely aware of what is in them and make choices in how I want to lower the carbs and increase the protein. (Protein shakes and protein powder are my super powers. Lol - I swear by my protein powder/shake - it has 2-3g carb and is really high in protein, keeps me feeling full and keeps my BG nice and stabilized until my next meal.)

In the beginning (& still now) I also used MyFitnessPal and logged every single thing I ate in a day to see how much I was eating in a day (including how much carbs and sugars) and if I’m cooking something I enter the recipe in and have it saved and let it calculate the nutritional values. It really helped me to not just see what I was eating - but the amounts. It’s hard to lie to yourself when it’s right there. That’s when I started measuring and weighing everything. The whole “deck of cards” “dice” etc method for eyeballing portions is great for some people - it didn’t work for me. I needed to not be able to game the system and lie, even if just to myself, about how much I was eating - especially when it came to carbs and comfort foods. Pasta? Mashed potatoes? Things like shepherds pie and casseroles that used stuffing/dressing in it? Yeah… those were my comfort foods and I’d lie to myself about how much I’d eat. So a good set of measuring utensils and a kitchen scale and that was no longer a coping mechanism for me.

I knew in order to get healthy and have some treats sometimes, I was going to have to take control over the diabetes and my eating habits. I could still buy that box of muffins on the shelf and eat them mindlessly in front of the TV or open that bag of chips with dip and eat through it while I’m reading - and maybe start that second bag. No one was going to jump out from the shadows and wrestle them away from me. But, was feeling miserable, achy, tired, and yes, even having bouts of depression and suicidal thoughts, worth it? For me the answer was no.

It was hard. It was hard to come to the decision. It was hard to shift the focus from drive throughs on the long days when my other medical issues were kicking my butt and I just wanted something super easy - to learning to do weekend meal preps and freezer stocking in pre-portioned containers so I have homemade “healthy frozen dinners” I made myself in a variety of dishes I can rotate through (including healthy desserts). It. Was. Hard. It was often overwhelming. It was unfair.

And then… it sort of wasn’t. I had a regular frozen dinner one night because I hadn’t prepped, I’d had to go to a wedding, I was over tired and just needed something quick. And it was awful. It was too salty and too… processed. I ate it - and promptly made a plan to make time to cook the next day and get at least a couple of meals stocked up.

I enjoyed hosting dinners and having friends over instead of going out. We saved money, didn’t have loud crowds of people all around, and even if I made a couple of dishes for everyone to share, there was always leftovers to put in the freezer in portions and I was eating healthy.

I would still have a meal out with friends - but if I could, I’d pick a healthy option on the menu. If I really wanted something special (dear goodness I still succumb to Mexican!) I pre-plan and eat lighter and lower carb for the other meals that day. I do the same if I know there’s a party and I’m going to want a piece of cake or something similar. I don’t just kick the insulin up, I also pre-plan the rest of my day/body to help combat it.

Diabetes doesn’t have to be the death of all things fun and tasty. It doesn’t have to be the end of all the fun times out with friends. If you enjoy cooking, it certainly doesn’t have to be the end of all things that taste good.

I promise, it gets more manageable. With time and experience, it gets more manageable. When I started they never gave me an option of being on a pump - and I have a severe phobia of needles. So on top of all of the other things I would have a mini breakdown every time I had to even test my blood. When they had to put me on shots was one of the worst conversations of my life.

A few months ago I had a very frank conversation with my endo nurse practitioner and said I was at a breaking point. My physical and mental health were suffering from the number of times I needed to test and all of the injections they had me on throughout the day. I just couldn’t do it. I was on a once-daily, a twice-daily long-acting and then short-acting before meals - and my blood sugar was still rollercoastering - highs shooting up into the high 200s- low/mid 300s and lows dropping at times all the way down into the 50s. My last A1c had shot up from a previous of 7.3% to 12.2%. I was in tears and told her honestly I (like you) had stopped taking meals so I could stop taking insulin because I couldn’t stand the shots anymore. Having been anorexic in high school and college, this is a very slippery and dangerous slope for me to be on psychologically.

It was the best conversation I had.

We made a game plan. We immediately eliminated the once daily shot and changed to the pill form of it. We discussed moving me to a pump - our theory being even if I had to change it daily, it would still only be one stick and by going with the Omnipod, I didn’t have to see or deploy the cannula myself - it’s all automated.

We changed me from sliding scale to a carb ratio form of therapy - and in the following weeks she and I stayed in close contact via email to fine tune it based on my Dexcom settings, which I share with her through the Clarity app so she can see on her end where I’m trending.

Two of the biggest things:

  • She set me up with amazing specialists - a CDE and a diabetic nutritional specialist. Both were worth their wait in information. The CDE went over the pump options with me - but also gave me fabulous information on all things diabetes. From medication side effects to be cautious of to some other possible options she suggested to my nurse practitioner directly - the CDE has been amazing and has stayed in touch with me, following up with me after I got started with my pump to make sure things are going smoothly and my settings are correct for me on an ongoing basis. The nutrionalist went over the carb ratios again with me and the importance of eating meals and counting all carbs accurately, no fudging (with numbers as high as mine were there was a concern that I could be fudging - instead, it was just me not injecting because of the needle issue.) we also discussed the way the liver factors into the diabetic/glucose picture and why it is important to get the insulin in and not let the liver take over bringing the blood sugar down.

  • The other thing I walked out of the nurse practitioner’s office with was a plan for the pump (in my case the Omnipod 5). For me, it was a game changer. But, as my NP, CDE, and nutritionalist all reminded me - it only works/helps if I do my part. It’s not magic. I’m betting the Tslim is the same way.

The reason I share this crazy story with you is to say, even after all these years, after the adjustment, having a good grip on it, I hit a wall and a breaking point and had to reach out to my team (and we are a team!) and tell them “this isn’t ok, something has got to give - I’m in a bad place - I need help.” It’s a hard, scary, humbling call to make - but it’s also freeing - and if it works the way it should, you come away with the resources, help and support you truly need. If not, then you need to start looking for a new team. If they’re not listening to your needs, concerns, and fears - you need to start looking for people to put on your team who will hear you and respect you because this won’t be the only time in your diabetic life this happens (hopefully the incidents will be few and far between!)

In 20 years you’re going to look back on this and it’s all going to be part of your journey to where you are then. The struggle is real, but you are stronger than your numbers. Be patient and kind with yourself as you go through this adjustment. Remember, of the last several years since your diagnosis, 2+ have been socially distant due to the pandemic, which I am sure has impacted your adjustment period tremendously. So give yourself the grace of a great big breath in & out, a big hug, and then think about just asking your endocrinologist for a mulligan and starting over - clean slate. See if they will let you see the CDE again and review the pump training again, this time maybe see if they’ll let you record it so you can refer back to it. See if there are any support groups, especially if there are any group cooking classes for diabetics. Try to look at the things you’re seeing negatively right now and ask “what could make this a more positive experience” and then take it to your endocrinologist and talk about it.

Good luck. :four_leaf_clover:

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I’m also an engineer, and I think we have a fatal flaw. It’s the idea that we can figure out everything. Then we can adjust it to suit us. It works well for some things.
It took me 3 months to get my tandem going right. I was constantly second guessing it. I still correct more than I should.

I started a new job and we did this escape room experience. 4 teams of 5. I had all the engineers on my team and thought we had it made. However none of us would ask for help, which was available to us.
We also insisted on figuring everything out in detail, the why the how and it’s relationship to the rest of the room.
My team didn’t finish but all the rest of the teams did. It was schedulers and stock people who won the day.
We can get in the way of simple things, and we have an overwhelming desire to understand and in some instances this holds us back.

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Amen!

I have been doing this darn diabetes job for over 50 years. Been through most of the “newest” treatment plan at the time. Urine testing with test tube and eye dropper, urine test strips and tape, blood test strips that took 2 minutes and you wiped with a cotton ball, one shot, then 2 shots and finally up to 5. Made the switch to a pump after about 20 years and haven’t looked back. But my point here is just because the Tandem is the newest and everyone is using it, doesn’t mean it’s for you.
There is no reason you have to keep using it but I would definitely get in the see a CDE or pump trainer to work through settings. The pump can only do so much. I was told months before Tandem came out with their newer pumps to get my settings in line first. So if your basal rates, corrections and carb factors are good, the pump has a much better starting point to make its adjustments.
On the just exhausted state of this disease, is the whole key. If your mental outlook isn’t in a good place, this disease can reek havoc! I loved the one day conferences TCOYD has done but they are all online now. I highly recommend going to their website and go through their video vault. There is also the Behavioral Diabetes Institute(BDI). They no longer do workshops but they also have a website with info. You might also try contacting them to see if they do video consults or can recommend someone in your area. I have tried seeing someone who doesn’t know diabetes and they just don’t get it. The folks at BDI get it!
And please don’t try and fix everything. Just pick the one thing that is driving you crazy and do what you can to help it get in a better place.
Good luck and if there is no support group in your area, please use us as much as you need!

Hi @Erbsnspices … I was on a pump for seven years, and then decided to go back onto MDI. And, I feel better than ever. For me, using a pump had run its course and was no longer providing me the “freedom” a pump can provide. I am not bashing pumps, because they are a very useful tool in managing T1D. But just like anything else, there are pros and cons. I’ve been a T1D for 32 years now, and what worked for me 10 years ago, doesn’t necessarily work for me today. After seven years of pumping I had developed lots of scarring and the insulin was no longer absorbing properly. So, back to Lantus and Humalog for now.

Here is the TL;DR - Go back on MDI for a month and see how you feel. If you like how you feel, and you have more energy, etc., then stay on it until you decide to go back on a pump. In the end, its manual versus automatic (kind of). They are both good and have their pros + cons.

I wish you well! DM if you have any more questions!

R,
Gluke Skywalker

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