During that first week of instruction we had at the Joslin Clinic I remember a nurse writing on the blackboard in giant letters, ‘DIE,’ and saying, “Always remember that if you don’t follow the regimen of Diet, Insulin, and Exercise, this is what is going to happen to you.”
With many things, I choose to retain the more prevalent better experiences and not dwell on the infrequent less pleasant experiences.
I also remember a triangle drawing connecting diet, exercise, and insulin when I received diabetes education back in the R and NPH days. It’s interesting to me that nowadays the diet and exercise parts have been dropped in favour of focusing on insulin alone. In my opinion, as crappy as the older insulins were, there are some merits to looking at all three of these aspects as important and as crucial parts of diabetes management, rather than just focusing on one and ignoring the other two.
That is a great point. In fact, we are seeing moderate exercise is having significantly greater impact as compared to dietary variability.
We were clearly always aware that exercise had an impact but the degree of the impact is surprising.
I’ve been type 1 for 37 years. Over many hospital visits in which my non-internal medicines doctors literally destroyed the control I know the most about, and I had to get it back under control Un-beknowst to them, I finally concluded that I would never allow another doctor to take control of my BG away from me. One nurse who understood the average diabetic, read my blood sugar at 230, an hour later fed me breakfast, an hour after that came in to test my blood sugar before giving me a dose of insulin & did not understand why my BG was 450… doesn’t happen to my other diabetic patients. Not her fault, except that I know what needs done & when it needs done, & the doctors should never have wrested control from me. At about the same time I said never more, the hospital policy became, insulin pump users would maintain their own control.
My hospital experience was a hospitalist who took me off of my lantus and hospital staff did not pay attention to my readings. Woke up in CCU three days later due to DKA.
Will NEVER let someone else but me or my spouse to control my insulin
Im every profession you will find a few assholes that dont deserve to do whatever it is they do but my God some of you act as if a physician telling you the truth about your disease and how to handle it is just MEAN! If you think you can handle it on your own then why even go, why even take insulin. They are just shaming you and being so mean. THAT IS THEIR JOB…TO TELL YOU WHAT YOU DONT WANT TO HEAR BUT NEED TO. They arent your best friend tbey are your specialist. By the way they didnt spend all that time and money to learn how to take care of you, no they didnt, they took sensitivity classes as not to hurt your delicate feelings. It’s just outrageous to believe all you need is insulin and the rest of the medical field, if they tell you how it really is, are uneducated jerks just trying to ruin your day. I have a little secret…its called life, deal with it. No one has it easy, have you seen patients after chemo or transplants that dont take? Please quit bitching about food and exercise ots an insult to those who truly hurt every day!
How can you take such a strong position, is it because you don’t actually have diabetes yourself and only see it second handed.
Diabetes is a tough disease, a tough disease that is a lifetime. The difficulty that is diabetes makes the treatment of this disease at times appear to be mean, this is understandable because it is a sadistic disease that only gives pain because what must be done is in no way easy.
The blame for this disease may be wrongly directed at medical professionals but have no doubt there is meanness in diabetes. Everyone of us should take pride when we thrive despite the meanness.
The whole topic got off to a pretty tendentious start. “Mean” implies intentional cruelty, and I think that’s actually very rare. Like @Stemwinder_Gary says, the disease itself is cruel, and that means it feels like someone ought to be to blame for that, but of course no one is. I tried to draw the distinction between what I experienced as cruelty vs what was actually going on, and I think it’s an important distinction. Like you said in your other post,
I’m sorry I didn’t respond to this post sooner–it’s really not my area (I’m the PhD kind of doctor). But it really sounds like the problem is more a relationship and psychological problem than a medical one as such. The frustration you feel standing by and watching this happen is heart-rending. I know a bit about it both as a parent of a step-daughter with severe health problems (though not T1) that I can’t fix, and also because I have a young second cousin who is the only other T1 in my huge extended family, just into her twenties now, who is also non-compliant and a drug abuser, which makes it worse. Being unable to help or change the behavior of a person you love, who is essentially destroying him or herself is enormously disheartening. Just providing information rarely does it, there has to be some other kind of connection, and based on my own experience I can only say that you just have to try to be ever alert to when those fleeting moments arise.
In any case there are a number of parents of T1s on this site and various topics devoted to that most difficult aspect of the disease, so I urge you to try posting your own separate topic there.
Thank you, really, its very hard. Im in the medical field so I see and hear so much. I really appreciate your response.
@Summer5, I hope I did not sound like I was disparaging you because you are a parent of a T1. Persons that care for diabetic loved ones suffer from this disease in a similar yet different way.
The point I wanted to make is that there are just some things about T1 that we (myself included) cannot fully understand. I am long term type 2, my diabetes treatment looks just like T1, I use an insulin pump and can suffer from almost all the complications that can arise. I understand the practice of treating T1 because I use the same practices with my T2 but I do not feel qualified to say I understand what its like to be T1.
Because of my familiarity with the T1 lifestyle I sometimes feel that I can almost understand but it is always “almost understand” and never understood, I feel you must be T1 to truly understand it. I will always have the utmost respect for my T1 brethren
My years here on this site has taught me this, everyday is life or death for a type 1, everyday there are decisions that must be made wisely for the consequences are great. This is the meanness in diabetes T1. It is not in the ones that treat the disease.
Thank you for your response, that makes alot of since and Im sorry that anyone goes through it!
I understand that feeling well – my diagnosis is currently T1; however, there are aspects of my diabetes that don’t quite follow the patterns of “typical T1” (whatever that is!). As a result, the fluctuations in my BG are usually less severe than most people with T1 experience. On the other hand, I have to worry about many of the risks that are more typical to T2’s (like cholesterol and BP issues). My diagnosis path was not a straight one, so I’m always questioning the validity of my diagnosis – perhaps that’s because the onset for me was much later in life than for others, or perhaps it’s something else entirely? (Can we say T4? )
So yeah, I’m like you, @Stemwinder_Gary, in that I understand the T1 lifestyle, since I live it - and, in my case, carry the designation too - yet, my challenges are quite different that many/most T1’s, and I’ve had the advantage of some good insurance and good doctors to give me a step up on management – so I don’t quite understand fully was folks diagnosed as kids have and do go through every day.
For the sake of all of us, as human beings, I wish there was some way for us to walk in someone else’s shoes before judging their walk. Even well-intentioned advice coming from trained medical professionals can be (and is usually) delivered in a condescending way because of the lack of empathy. Don’t know…maybe that’s just something that can’t be avoided.