What is the most challenging part of your diabetes management?


#21

Since I have to take immunosuppressive drugs to control another autoimmune disease I have along with diabetes, any indwelling connections such as are required for the variety of new diabetic blood sugar control devices will simply cause infections in me, so I have to carry on as best I can with MDI. Since even with maximally controlling all the external factors that can be controlled the blood sugar levels still jump around insanely, that problem is going to remain whatever responses I make to the sudden and dramatic blood sugar shifts.

A recent study has suggested that a low-carbohydrate diet is not healthy, so perhaps that is not a sensible diet for diabetics. Statistics show that the rate of endstage renal disease around the world is directly correlated with the local rate of protein consumption, so if diabetics don’t eat carbohydrates, they will have to increase the other components of their diet, and trying to get more calories from protein may carry risks. That leaves fats, which also have a bad reputation. So perhaps the traditional balanced diet is best.


#22

How do you know it would simply cause infections? Have you tried it? Have you talked to others who take the same types of medications and use pumps/CGMs? If this is just based on comments from one doctor, then doctors are not always right. I had an endocrinologist refrain from recommending a pump to me for years because he assumed I wouldn’t be able to use one safely as someone who is legally blind. It wasn’t until I did my own research, found out there were other blind and visually impaired pump users, learned about adaptive tools and techniques I could use, and insisted that I wanted to use a pump to better my control and would find a way to make it work that my endo prescribed one. I’ve been using one for over eleven years since and it, along with CGM (which has similar challenges), changed my life. I also have additional issues with my pump caused by severe allergies, which I’ve learned to deal with through connecting with doctors and others with similar experiences who can help, trial and error and persistence, and putting a lot more work into infusion set changes than most people. I have managed to keep pumping where many may have given up.

If you are basing your information on what one doctor has said, I would encourage you to explore the issue further through second opinions, others in similar situations, diabetes educators, and so on. I’m fairly sure there are users of this forum who take immunosuppressive medication for other autoimmune conditions and use pumps and/or CGMs. Why not start a new thread to connect with them and see what their experiences have been like?

I get, as much as anybody, how draining it is to deal with multiple other autoimmune and chronic health issues or disabilities on top of diabetes. Not easy for sure. And I also strongly believe (based on my own experience) that having multiple chronic conditions makes blood sugar much more unstable than just having diabetes alone, likely because there are so many more inernal, uncontrollable factors that impact blood sugar. But unless you’re dead, you can always do something to positively impact your own situation.

You cannot make any conclusions or sweeping generalizations from a single study. You especially can’t make sweeping generalizations about people with diabetes based on a single study that was not focused specifically on diabetes. There are other longitudinal studies showing a lower mortality rate from a low-carb diet. So which one is right? Science has not sorted all this out yet. You have to base your treatment decisions on what works best for you, not what studies conclude, which may or may not turn out or be true.


#23

Lol. Well said.


#24

Social interactions are the most challenging part of my diabetes management. I’ve accepted that most people, including good friends and close relatives, have trouble understanding how much diabetes influences my moment to moment life. I try to educate them with simple basic tenets of diabetes but it rarely sticks in their memory.

Trying to convey the inverse relationship between insulin and blood glucose almost always confuses. Throwing in other basic variables like food or exercise comes across as way too complicated for polite conversation.

I do better when I am alone than when I’m trying to manage as part of a group. Most people think changing the time, location, or restaurant when going out to eat as a group is a simple thing and a decision that anyone should be able to adjust to if they just keep a flexible outlook on life.

It’s hard for people to understand that I don’t have much flexibility once I take my pre-bolus. And I don’t want to eat a handful of glucose tabs to satisfy an insulin dose delivered in anticipation of an earlier agreed upon mealtime that has now morphed into an hour later.

Things have improved in recent years with the availability of Afrezza. I’m thinking I should always use Afrezza when the social wildcard is in play.

Now I know that people who love us want to understand what we’re up against but my success is limited with fully educating people about what makes me tick metabolically and how that affects my social preferences. Many people want to understand but it just seems to take more time and repetition than people are up for.

I’ve accepted these realities but I find it hard to communicate just the right amount of detail to represent my needs well without creating undue burdens on my listeners.


#25

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#26

It’s funny how much we care about what other people think. I used to be really, really bothered that people didn’t understand my situation, why I did and didn’t do certain things… Over the years I have given up trying to make people understand, because they will never understand until they experience it themselves. It’s important that people are respectful of my needs, but beyond that, I don’t try to explain unless they ask. I just do what I need to do, and if anyone asks, I’m happy to answer questions.

Yet, it’s funny how even with that mindset, I’m still so self-conscious sometimes. For the past week or so I’ve been wearing an N99 mask outside because the air caused me such bad allergic/asthmatic reactions, and even though I know others are probably using masks and I’m doing it so I don’t end up in emergency, I’m SO self-conscious wearing that thing around the city…


#27

i agree with you in terms of the CGM’s making us less stressed. its been very easy to control my blood sugars with it along with my pump. I’m about 5 months in to the pump and CGM world and I would say its been great for my health. on the other hand its a different kind of stress. When my pump levels are full and green, meaning everything was just changed, battery life is full, insulin is full, cgm was just connected, auto mode is doing its job life is great. then comes day 2 or 3 when insulin is getting lower, battery is losing its life, cgm is asking to callibrate and then i start feeling the stress. i sometimes forget how life was before my pump and cgm. I panic whenever something goes wrong and then i stop and think, hey I used to have diabetes prior to this pump for years and I managed, I can manage until i figure things out with my tech.


#28

YES !!!

Great way to sum it up for me too.


#29

i agree with your perspective on social interactions being challenging. Both in terms of what people think and trying to explain. you’re right they wont understand fully everything we have to deal with on a daily basis and trying to explain one sliver of that at any point in time will just take too long or like you said they are likely to forget so we are stuck explaining over and over. I was diagnosed in middle school and being a teenager was tough socially as it is so having diabetes and having to take care of myself eat the right thing check blood sugars and take insulin shots while im at school was a big challenge for me. now 10 years later I’m having to do all of that at my job and it has gotten easier for me. my coworkers understand that i have to do things a little bit differently sometimes and they don’t judge.


#30

I’m very strongly immunosuppressed from the effort to stop Wegener’s Vasculitis from destroying my life. The infections coming from inserting connective tubing into the body are overwhelming after a day or two and require their removal, so this effect has been empirically confirmed.


#31

It is hard living in a big city where everyone always wants to try new trendy restaurants! I get a bit of anxiety sometimes when colleagues want to go for lunch at some Asian fusion type of restaurant or something like that, and I’d rather just go to Subway or a shawarma place because, while not the best options, at least I know how to bolus. It’s always interesting to see how terrible people eat when they eat out. I was a bit chunky in high school (no one ever believes me now) and that experience taught me to always think about what I’m eating to this day and eat healthier, along with being type 1.


#32

Ha, I live in an area with a ton of restaurants and people are always asking me what I recommend. I have literally never eaten at any of the restaurants near me. I definitely get stressed around social eating, the worst being when someone invites me over to dinner. But these are more food-allergy problems than a diabetes problem (I’m sure the celiac folks get what I’m talking about, too).


#33

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#34

I eat subway around once a week. I just dose for it. It’s fine. I think the rotisserie chicken is yummy. I load on lots of veggies and order wheat bread. I’m not saying it’s healthier than a salad loaded with veggies and quinoa, but I wouldn’t call it unhealthy.


#35

I must confess that last night I put my yummy charcoaled burger (seasoned with Montreal Steak seasoning, granulated garlic and onion, salt) on a bun–something I’ve been avoiding, in order to keep weight down, and carbs at bay. Sometimes, we just have to indulge a bit! :slight_smile:


#36

Glad you enjoyed it!!!


#37

I love cooking steaks, burgers, etc over charcoal. And my wife loves that I love doing that, as it’s a bit less cooking for her. :slight_smile: I also smoke pork butts in a full-on smoker, which takes all day. Yum!


#38

For me as a pensioner
its having to pay for dexcom cgm as totally hypo unaware now after 52 years as type 1 and having to pay for decent meters and testing strips. It should be made available to everyone so we can manage our diabetes and keep ourselves healthy.


#39

Drug formulary changes to the prescription plan.

No, all insulins are not created equal and not suitable for every body.


#40

My challenge is affordability of my insulin pump, CGM, and glucose testing supplies every month. When I was working it wasn’t and issue. Now that I have reached retirement age, every dollar is counted. I find that Medicare changes the amount that they pay frequently, so trying to budget in a problem. In this age of groupons, discounts, beaters, etc., there is nothing for medical supplies.