29 Comments
On a scale of 1-5, how satisfied are you with your current overall T1D care routine? (1 = the least satisfied, 5 = the most satisfied)
You must be logged in to post a comment.
© 2023 T1D Exchange. All Rights Reserved.
I meant to say other. When I am in charge (using my pu,p settings, my target etc) I am very pleased – I give myself a 5. But when I use the recommendations from the Endo practice I have to use (Thanks HMO plan) I would rate the routine a 2. For some reason, the Endo practice I have to use has a very low opinion of patients with D (any type of D). I aim for non-diabetic lbas etc and bascially – on my settings – manage to “flatline within my narrow range. Yeah, I do have the occasional low and rogue high, but that’s life with T1D. Using the Endo settings, I can’t get under a bg of 140. I do change per their directions for a week, so they can see I did it viewing my pump upload. But then I go back to my settings. I have to go through this tango in order to keep my Rx’s filled. Why am I told to aim for an A1C of 7 – 7.5, when I can safely arrive at 5.4-5.8? I don’t get it.
5. As Albert Einstein said, “There are only two ways to live your life. One is as if nothing is a miracle. The other is as though everything is a miracle.” 🤸♂️🤸♀️🤸♂️
I am with you that everything is a miracle … even with the hassles … and for that I am grateful everyday.
I went through a brief feeling of being overwhelmed with my T1D just a few days ago. Occasionally, the feeling hits me. I just have to work through it. Funny, I’m retired. But, my life is so busy, that sometimes keeping up with my T1D routine throws me off balance. I’m not sure how to explain it. With my busy schedule, there is just so much details with T1D care, that it just gets in the way, at the worst times. Running out of insulin, refilling insulin cartridges, stopping to eat for a low blood glucose and waiting for gastroparesis to catch up, answering pump alarms, ordering pump supplies and insulin, dealing with insurance companies and DME suppliers, etc. etc. etc. Sometimes, it’s just too much. But, we keep moving on. I answered a “4” for this question.
Exactly! Those are the challenges I have to deal with as a working professional. You could not have put it any better than above. Thanks!
I have those days too! And I am retired too!
I chose 5. Having lived with T1D in my body for 62 years, overall I am quite pleased about my self care routine(s): pump and cgm (Tandem CIQ and Dexcom G6); healthy eating food choices; living an active, interesting and vibrant life the way I wish and choose to; the blessing of being in partnership care with several terrific endocrinologists to co-manage my diabetes care routines throughout the years; keeping an open mind and spirit; and acceptance and recognition of my own knowledge, experience and understanding of navigating a life journey with T1D. I admit, I am an optimist about living a long life with T1D, As a long time “thriving survivor” I am of the belief the best is yet to come!
Great post Connie!!
I am taking a break from Dexcom (and continuing therapy with my pump). I just needed a break from seeing the numbers all the time and the alerts. I also feel that I am tired of tubing, so I am looking at different insulin therapy options.
With libre, you can turn off the alerts.
I checked 4 but progressing to 5. Part of my care routine is what I do. I think it it wrong to put all the responsibility on doctors and other medical professionals. My goal is to make better life style choices and to continually learn.
I answered 4 only because I’m stuck with the decision to keep my Basal IQ Tandem pump (which I love) and stay with Dexcom G6 vs. update to Control IQ (which I used and didn’t love) in order to use a Dexcom G7. I wish we didn’t have to make such choices (although I am grateful to have the means and the choice to make!)
I just called Tandem last week to order new pump as my 5 year warranty is will expire in February. I was by Tandem that I could not have Basal IQ anymore and had to update to Control IQ. I’m in a dilemma about this and trying to convince myself that this will be a positive change.
Patty – I was able to get a new Tandem pump with Basal IQ back in December 2022 (although they double-checked with me twice to make sure that was what I wanted…apparently you and I are in the minority as far as preferring Basal IQ!) I am really sorry (but not surprised) to hear it is no longer an option..
I hear you. I don’t want C!Q – the target is too high (110 bg, my personal target is 80) and you don’t have the op[tion to set your own target. BIQ still has the temp basal function, CIQ does not. The AI infusion of insulin when the pump predicts you will need it is useless to me. I don’t allow myself to go above 145 or so bg, and CIQ waits until you are at 160 and predicted to get to 180. This isn’t to say I don’t screw up and get a high bg, but using correction (titrated based on how high I am e.g. above 150 I correct at 110% ISF and combine with a couple hows of tempt basal increase). I will probably not use any IQ program if I can’t have BIQ and must use CIQ in order to switch to the G7 (which I will only do once the G6 is no longer available. If the system allows for setting your own target and access to temp basal then I’ll be happier to switch.
As an aside (I always have one or two) I’m not really happy about the disposable transmitter with every sensor. That means more bad waste. At least with G6 I am only having to dispose of bad waste once every 90 days.
Been on Tandem CIQ 24/7 SleepMode, just switched from G6 to G7 and it just keeps getting Better. Think I need to let it take over now and work it’s kinks out but having A1c in Low 6’s and even a 5.4 says a lot
Now hav 780G dialed up. No thought re hi or lo during nites!
TIR also tracks 90 %
My routine is fine. It’s me that is the problem. Don’t pay enough attention to carb counting and I could eat a few less sweets. 😫
I don’t eat any sweets just never could get it right, so I just avoid it. I have trouble with regular food never get that right either. It’s always a guessing game.
You and me both!!😂
4 – There’s always room for improvement.
I was one of the first Tandem x2 users in the Phoenix area. Started early 2018 and it worked well for me. At 5 years of use and warranty expired, I received a new Tandem x2 pump in 2023. I started getting lots of occlusion alerts, many of which were not justified. The supplies that accompanied the new pump seemed different. I had issues with the infusion sets causing redness, itch and lumps. I felt Unomedical possibly made some changes in their Mexico made products. I tried TruSteel and still got occlusion alerts. Rarely did I discover a true occlusion. Many times I could clear the alert and continue with no problem. Only once or twice was there a clear indication of the exact issue. I was very disappointed that there was nothing new to my new Tandem t:slim x2 pump. They’ve moved onto the Mobi. I recently spoke with my Endo about some ideas I have about trying a different therapy method. He was hesitant and stated some concerns. I reminded him that I’ve been the first of his patients in trying new products or therapies on 2 occasions and as a team, we may want to consider my idea. Time will tell.
Equipment and providers I am satified with. Now if Medicare would catch up with everything, I would be satified and given a 5.
Well, I just started using a CGM (not going to name a brand) and it is “nice” to see the arrows. Helps understand where my blood sugar is going. HOWEVER, the accuracy is completely lacking, especially during exercise and tennis (which is my love). So! Little mad at myself for spending money and time on a device just to give me some “added” reassurance of what my blood glucose is/gonna be when I am relaxing and hanging around the house.
I’ve learned a few things on the CGM, and I’ve made some adjustments for the better.
For example, the CGM has given me solid proof of the foods that agree with my system and those that are really, really bad. Fructose and Whole wheat bread are evil. Protein and fat are really good unless it is mixed with high carbs, like pizza. Interestingly, sucrose is fairly benign unless it is mixed with high fat then all hell breaks loose.
High potassium diet (3000mgs) boosts my insulin sensitivity. I can’t get too mad at myself for paying to learn. But, I won’t stick with it. It is too slow to catch lows (caught all before the stupid sensor) and accuracy is lacking to rely on when I need most.
I would have said 5 but went with a 4 because I’m spoiled. All jokes a side yes there could always be improvements and there are a couple I can think of off the bat. The adhesives being used on the Dexcom suck due to allergic reaction, I would love the tandem to be available untethered as well being able to set my highs and lows on the pump to allow for earlier responses for corrections being made by the pump. I could name a f few more yet they aren’t as important to me as what I’ve mentioned. Cheers…..
Currently, I rarely if ever go more than 3 months w/o seeing a doctor or specialist NP for my T1D. This schedule coupled with other specialists: eye, kidney and neuro has allowed me to stabilize and improve an increasingly challenging health condition.
50 years duration as of July 2024.
I’m satisfied that my care routine, pump, cgm etc. is best practices. I’m tired of both doing the routine and the fluctuations of BS.
“Satisfaction” comes from being (at minimum) both content with the outcome AND able to tolerate it as well. Satisfied, I am not remotely satisfied…. The “care” which I receive is solely a BUSINESS. It possesses zero interest in any positive outcome on any, even remote level. If a severely negative number was possible I would freely choose that, instead of a mere low rating of 1.
I hate being on a pump and counting carbs! I want to go back on MDI, but my endo doesn’t agree.