10 things I hate about diabetes


#21

I can see how healthier (non diabetics) can view our “pre-occupation(s)” as obsessive, especially when compared to many diabetics who choose to live without any concerns about their control.

There was a time 40 some-odd years ago when I didn’t think twice about running sky-high BG’s (at that point there weren’t meters or even A1C’s, so you really had no idea if you were 300 or 500+).

I consider controlling my BG as job #1 now, however it takes very little effort with a pump + CGM. In addition, I no longer feel as if I’m a slave to 1 or 2 daily sub-Q injections of god-knows what we used to inject ourselves with.


#22

Well there is a plus

These types of posts make those who have spouses with it better understand what they go thru and to be super tolerant of anything that happens - high, low, etc


#23

The endo I had for 25 years told me that patients who successfully control their diabetes often know more than their doctor about how to manage their challenges. He told me he learns as much from his patients as they do from him, and uses that knowledge to help other patients facing similar challenges. He passed away 10 years ago. I miss his “partnership” approach. He knew I had ‘in the trenches’ experience he didn’t.


#24

I had an endo like that 30 years ago. I wish I could find one now (or a T1D endo who wears a pump) :unamused:


#25

I wish I was able to collaborate with a doctor like that! I admire his willingness to acknowledge what he doesn’t know as well as his recognition that patients possess a deep knowledge of diabetes that can only arrive living with diabetes 24/7 for decades. Your doctor was a wise man! I’m sorry you lost him.

Diabetes patients are the most under-appreciated and underutilized resource. Our knowledge and willingness to help clinicians learn more should never be marginalized and ignored,


#26

I think a large number of medical practitioners get hung up on textbook approaches to treatment and forget that the patient is the #1 member of the health care team and that learning goes both ways.

I am so fortunate to have a primary care physician that truly treats our doctor-patient relationship as a partnership. She offered to make a referral to an endo if I wanted to see, I declined and told her that we were both equally capable of treating and managing my diabetes and that specialists often aren’t interested in the whole lifestyle management that comes with diabetes. My overall health improvements and lab results speak for themselves.


#27

I agree that back in the day, I use to get the talk every visit about my lows being to often and to low. And back then, they were very correct. I didn’t have the knowledge I have now. And that being a CGM. That one piece of equipment has put all those talks about being to low to rest. When I can show what my time in range is and how little time I spend urgent low, there is no discussion.
But this discussion is probably necessary for those who do run low and don’t use a CGM. Doctors can be liable if anything happens and they knew the patient was having lows.
But thankfully we are moving more and more to the technology that is available. I just feel everyone using insulin should have a CGM. Knowledge is power and while testing 15 times a day, getting a number every 5 minutes can be enlightening.


#28

Agreed @Sally7, the CGM is the best single management tool for T1D’s I’ve seen in 55 years :+1:t3:


#29

My GP has always said that I know more about how to handle my diabetes than he does. He says I am the boss and that is certainly the way I see it. Really after being a type 1 for 60 yrs what is he going to tell me that I don’t already know? I am more than willing to take his advice about other medical problems, although I want a say in those too. This has remained true with my husband’s bouts with cancer and my son’s devastating illnesses. I have spent years doing research about all of our illnesses.

I convinced a cancer surgeon not to remove my husband’s esophagus but to treat his cancer in a way I had read about on a forum. After researching it I was very much against having his esophagus removed. The surgeon is a world renowned expert in esophageal cancer at a large hospital in Seattle. When I told him of my research and explained why I thought the other method was better he agreed to let us try. 10 yrs later my husband is fine and the method I chose is used more often now.

Never be afraid to do the research and then to speak up.


#30

One more thing I hate about diabetes: having my dexcom alarm awaken me from a deep sleep in the middle of the night because my blood sugar has dropped too low, or worse yet, because it is too high due to problems with an infusion set! (My non-diabetic wife doesn’t like it either, though she doesn’t complain. It’s way better than it used to be before I had a dexcom and I would occasionally convulse violently with seizures from low blood sugars in the middle of the night).


#31

I agree with most of these. I have fortunately not experienced much of #5. But I could easily replace that with fear of hypoglycemia. I would broaden #6 to include every meal, not just when eating out. With #7, I don’t mind too much, because I don’t often have to explain things other than briefly if people ask questions (in which case I usually appreciate the interest they’re showing). I find dealing with the public’s unsolicited comments, inappropriate questions, and unexpected physical contact as someone with a visible disability to be far more irritating at times. And #8 used to really bother me, not just about diabetes but about all my medical conditions and disability. It bothers me less these days, because none of us can ever truly understand what someone else is going through unless we’ve gone through the same things ourselves.

I think my #10 would be that diabetes is constantly changing. Every time you think you’ve found the dose that works, something changes and you’re back to chasing highs and lows. Over and over ad nauseam. That drives me crazy at times.


#32

Hear, hear!


#33

What is the rationale doctors give you? Is it just the fear of a hypoglycemic episode or something else?


#34

I convinced a cancer surgeon not to remove my husband’s esophagus but to treat his cancer in a way I had read about on a forum.

I am working with someone now in a somewhat similar position, coincidentally. Could you share the forum?


#35

There should be a topic or post listing things providers have learned from their patients.


#36

The 2008 ACCORD study showed that more older type 2 diabetics with low A1c levels had fatal heart attacks than folks with higher A1c levels. Actually those with lower A1c numbers had fewer heart attacks than those with higher A1c numbers but more of them were fatal.

After seeing the results of this study, doctors were worried about their patients with low A1c’s. You can imagine how doctors felt when I came into their offices with an A1c of 4.9.

It didn’t matter that I was a type 1 and the study used people with type 2 nor did it matter that the diabetics with non diabetic level a1c’s actually had fewer heart attacks.

I imagine that these doctors were also worried about being sued if I died while under their care.

In 2019 doctors just seem impressed with my non diabetic levels.


#37

Because of my many years of diabetes, both my husband and I are quite sensitive to changes in our bodies. Because of this, my husband realized something was wrong and got himself to a doctor. We were stunned to find out that my preciously extremely healthy 59 yr old husband had esophageal cancer. He has no history of smoking. Since it was caught at stage 1, I felt that having his esophagus removed was extreme. Esophageal cancer surgery is an extremely complicated surgery and one we wanted to avoid if possible.

He had an ablation procedure in Jan 2011. We went back to Seattle 4 times in 2011 for more treatment. Now he has an endoscopy once a yr which has always been clear.

I am sure many advancements have been made since 2011.


#38

I see - the ratio of fatal to non-fatal heart attacks was apparently higher in the low A1C group than the higher group. Thanks. I do wonder how they explained that finding, what the mechanism was.


#39

Thank you.


#40

But fewer of those in tight control had a heart attack.