36 Comments
On a scale of 1-5, how satisfied are you with your current overall T1D care routine? (5 = the most satisfied, 1 = the least satisfied)
You must be logged in to post a comment.
© 2023 T1D Exchange. All Rights Reserved.
• I was going to answer 5, but I got to thinking of the expense of my time doing administrative and payment matters. Same goes for the expense of my time wasted pursuing diabetic gewgaws and fandangle. Great stuff, but is it worth the effort when priced out fully? 🧰
Most- only because of current 780g and ability to self correct during night : > )
Was first going to put a low number, because of all the recent problems I’ve had while dealing with greatly fluctuating needs with a CIQ that uses timing that doesn’t quite match mine, particularly when gastroparesis is acting up. But, thinking of how those needs would have been met with my 2 shots of Regular and NPH insulin, not any home blood glucose monitoring of any kind, and that regimented diet of 1955, I moved the number way up.
1953 for me.. I do not have any so called T1D problems..{lucky ?? ]… The bigest pain was having to boil the syring and needle every day..
On the CGM less than 2 years now and lately do not trust it!!
I’m tired of better more expensive technology. We should have better options.
thats why I reject most of it !!
When the tech works the way it’s supposed to do and BG control is fairly smooth, I’d say 5. But when the CGM goes wonky or there are issues with the Pod, I’d say 2 (or maybe 3 ‘cos it’s still better than a zillion fingersticks and injections).
Lately my G6 has gone BIZERK !!
It’s a lot easier than I thought it would be. Am only a year in, but have a good pump that understands me (and I understand it), and I am getting the hang of bolusing properly for meals and coffee, etc. It could be so much worse, so I choose to say it’s really fine!!
Day-to-Day I am very satisfied. I know what to do and it is not burdensome. I wish I didn’t have to watch what I eat and how much. Other than that, I really can’t complain. My A1C is perfect and my blood sugar is very well controlled.
Kaiser Permanente of Washington does a pretty good job taking care of me. Anything u need to talk with someone they are but a phone call away.
I don’t stress about it too much. I probably should be more concerned. After 37 years I mostly know my routine. My Endo doesn’t seem to pay much attention to me.
It would be nice if there were better refresher courses for us long-timers. I see others on Reddit who are stressed out about their BG and A1C. There should be a way to be more balanced and still achieve a good life.
I answered 4 – and it is because I manage my T1D – not the Endo practice I have to use. My standards are higher than theirs (meaning tighter control – not higher bg’s) I aim for non-D labs and won’t settle for “an A1C of 7 is acceptable”. I actually take pride in my T1D mgt.
It’s difficult to separate the very frustrating time spent / wasted with administrated tasks from the improvement in the quality of my life that new technology has brought. When all the components work well together I’m definitely satisfied.
CIQ I rate a 5 since A1c is 5.4, Best since 1964
Currently I’m caring for my father, hours from my home, and getting him moved into a facility. The distractions and limited opportunities to live my own lifestyle that keeps me healthy is limited. At home I am able to exercise and eat my normal meal plan. Normally I would cruising at a 5-4 satisfaction for my T1D care and not have to constantly adjust treatment regimen. Looking forward to getting back on track.
I sympathize with your situation. Years ago, I went through something similar with my father in the hospital and long term care. I was totally exhausted stopping in to see my dad almost every day, on top of working and commuting long hours. It affected all facets of my life. I hope you get through it okay, and I wish you well.
Overall, I am satisfied with my T1D care routine. The insulin pump and CGM are wonderful tools. However, the healthcare industry dictating what type of insulin, when you can reorder and quantity issues, T1D care routine is sometimes a challenge.
I see a general practitioner who listens and so far is agreeable (will see when I ask for some more testing?). Much of my diabetic education was from non-professionals (not doctors or educators). My a1C is dropping with nothing but adjustments in “dose and timing” and confidence in my CGM. I’m comfortable and confident in what’s going on, and things will get better.
As others have commented, the day to day is generally fine thanks to pump and CGM. That said, the background struggle to get insurance to cover those is a constant struggle. I am again, for the 5th year in a row, still trying to get the proper paperwork from endo and third party supplier to the insurance so they’ll okay my Dexcom as necessary. This year has been the worst yet, and I’m currently looking at an 8000 dollar charge that I cannot cover without resorting to going into credit card debt. Mentally, I’m exhausted, having trouble focusing in general and sinking back into depression as I wonder how much longer I’ll be able to actually have a CGM that works in real time. (Health insurance VERY unhelpfully suggested I get a free meter from them for finger sticks. Great, as if I don’t already have a few of them thanks to same health insurance being weird about which test strips they’d cover in past years.) Allied Benefits – avoid at all costs.
I hear you. Insurance companies in general are the worst when it comes to covering anything that has to do with TD1.
Most satisfied would be a cure.
I love my Omnipod 5 that works on my phone and with my CGM. I was 84% in range last week without my usual check my CGM every few minutes. It is awesome at preventing lows. Not so good at preventing highs. They could improve that technology. The only reason I didn’t give it 5 is because it is so expensive. I mean really too expensive for the average person.
I answered 4, but thought about 3. Overall, things are a 10 compared to back in 1977. But, there are still many frustrations with the day-to-day regulation. I’m amazed that my A1C is 5.8, because my control still has more high BG ‘s than I would prefer.
There are many other frustrations. I don’t want to go to the Endocrinologist office 4 times a year, but am required to by Medicare.
I don’t care to make phone calls to my DME supplier, Edgepark every time I need supplies. I don’t like to make a special phone call every time I want overpatches for my sensor. I don’t like the many hours I spend on the phone with insurance companies and hospitals regarding coverage for office visits and specialists.
It’s all time consuming and exhausting. Sometimes I just feel drained by it all. There has to be an easier way.
Having said all that. I know that I have it far better than a lot of other people. At least, I have Medicare and a secondary insurance.
So, as I said, I’m a “4”.
Lawrence, you articulated my feelings exactly. I don’t like to complain, and I get the need for labs every 4 months – I in fact like that if something is wrong with me, it will be caught. But if nothing much has changed, why don’t need to see my Endo? I guess so he can bill the insurance? Why do I have to have new scripts when this disease is not going away? I know things change, though, so the insurance company doesn’t want to give me a huge script for test strips only to have me go on a CGM and not need them. So I struggle between being grateful and being annoyed. More grateful I guess.
Time consuming and exhausting is spot on. We pay for Drs and insurance and pharmacies to coordinate, yet here I am frequently doing their jobs for them! I gotta know the ins and outs of 30day vs 90day, all the special discount cards, how to help resubmit claims with the proper codes to get the most coverage… All that in addition to keeping myself healthy and alive. It’s so broken.
I wish that there was a faster-acting insulin that was pump approved and paid for by Medicare.
If Congress would enact some sort of cap on profits so that DME, pump supplies, and CGM suppliers weren’t raking in the billions from our misfortune, and insurance companies didn’t charge more for insurance because of those outrageous costs, I would say I am greatly satisfied.
On a worldwide scale, I should say a 5. I said 4 because while I get great care, it’s so damn expensive to keep me alive, in addition to all the 24/7 work it requires. I am so tired of explaining to insurance “that’s for a T2D, I have T1D and that does not apply to my care.” Our disease needs a new name altogether. Other diseases have been successful, let’s start a movement. Anyone with me? 🤣
I’m satisfied with the overall care routine. My bg is within healthy range 90% of the time and a1c has been under 6% for the past 10 years. The only thing that could be better is the access to latest technology a bit quicker in Australia.
Satisfaction not in the least. Foundational , fundamental pieces are and always have been summarily missing! Lacking vast pieces/core aspects satisfaction is impossible.
Though I routinely have great A1Cs and typically run 80-90% time in range, I don’t think I’ll ever stop trying to do better.
I get my care from Joslin Clinic in Boston,Ma and have received a bronze medal for having survived 50 years of T1D (that was 18yrs ago). Yes, I am very satisfied with the care I receive.
I went to the Deaconess Hospital back in 1985 and took a one week course with the Joslin Clinic while I was there. That’s were I started using blood test kits. For years, I went to the Joslin Clinic in Syracuse. I like the idea of getting a medal for living 50 years with T1D. Although, I think you deserve a gold medal. Congratulations!
#4. Fairly satisfied. I have good doctors, the best equipment, but I would like someone to come to my house and make delicious keto meals with my favorite recipes. It’s the little things. Diet and portions are a challenge. Food is hard due to large numbers of non-diabetic visitors.
After years of mismanagement I’m getting back on track so its a bit crazy getting everything dialed back in.