I was reading Stuart’s thread about Dia-cide (“suicide” by diabetes) and thought about the argument I have had many many times with one of my favorite people at BDI. And that is choice. Dr Guzmen at BDI and I have this disagreement often about choice. I am on the side of, I have no choice in what I have to do day in and day out. I have to test. I have to take my insulin. I have to walk everyday. I have to wear all this equipment. I have to see my doctors every quarter. I have to log all my info and review all reports and send to my doctors. I have to. She on the other hand says I can chose not to,so all that stuff. And she says many people in the room we are in made that choice at one time to not do all those things. They are that choice to not test, not take their insulin, not exercise, not see a doctor. They made that choice. And than of course my answer back is, I have no choice because I don’t want all this bad things to happen to me. I want to live a long and healthy life. I want to see my children grow up, graduate college, get married, have children. I want to enjoy my retirement not be a burden to my children. And if I want all of that, I don’t have a choice. I must do all those things and I must do them everyday for the rest of my life.
Yes I guess it is a choice but what kind of choice is that. Who wants to be a burden to their family. I want to enjoy my family.and because I want that, I chose to test 8+ times a day, to wear a pump and a CGM, walk everyday, log my numbers and review reports, see my doctors regularly, get lab work done etc. is it a choice or is it life? Yes I guess it is a choice but for me it was the hand I was dealt and while I hate it, it’s my life and my choice. Could I take the easy way out and not do all this “crap”? Sure but as much as this is a pain right now and I hate how my life revolves around my diabetes, I would hate the the future of suffering all those complications that might happen. Choice, is it really a choice?
So I will continue to argue the point that I have no choice. I will continue to do whatever I need to do to keep this beast at bay. And I will continue to enjoy my life and what it holds. That is my choice, what is yours and why?
Technically, it is a choice but personally I agree with you that it is no choice at all because neglecting blood glucose as a diabetic is self-destructive. It’s basically choosing to live because our lives are worth the efforts diabetes exacts from us. I choose to chase my blood sugar every day as long as I am blessed to afford it…
I live in a retirement village where most T2s do not test and eat more or less as normal. This is what they are told to do and what they choose to do. There is one old chap who chose this way and has recently had a foot removed, he is in a nursing home now. IMHO not a good choice.
I’m in the choice camp. I think we all live in the tension between fate and free will. Fate dealt us the diabetes card and it’s our choice that will determine, to some extent, the downstream cumulative effect of all the choices we make each day with respect to our diabetes. I prefer to play the hand well that fate dealt me. That will spare me the self-recriminations that I know I’ll dish out when fate delivers the consequence of poor choices made.
At least I’ll be able to honestly say that I did all I could do and further setbacks that fate deals out will not carry a sense of responsibility. We don’t control what fate will do to our lives. In that sense we are powerless and vulnerable. I accept that. What else can a person do?
I agree with @Terry4. We didn’t choose to have diabetes, but we do choose how we deal with it every day. It may not be a choice we want to make or like making, but we make it nonetheless.
I’ll take this one up with you…
Resignation is not the same thing as enjoyment.
“Control” is a mistaken belief, a tragic illusion.
Diabetes does not care about our alacrity, our zeal or vigilance.
No matter how careful, how hyper-vigilant, it laughs at us with dangerous malevolence.
What does it mean when in spite of the serious vigil, we get complications anyway? What then?
What of the severe anxiety caused exclusively because of our technology(ies) [sic. And they are not very good. FDA Meeting, March 2010, Gaithersburg MD ] ?
bump
I sure don’t get your communication style!
I was not speaking of you personally -shrug- it was not intended as some personal attack. Can you see the point I was attempting but apparently phrased so poorly Terry4? Apologies for my inability I will try again.
I offer there is a serious danger of our vigilance.
The anxiety that vigilance causes many/most people definitely in my view exceeds whatever good benefit…
OK. Your direct response to me, instead of to the general thread made me feel like the target. Can you see that?
Apology accepted.
Diabetes requires vigilance. The amount each person decides to allocate is a personal decision. If I am more vigilant than you, that is no reflection on you or me. We’re different people.
I feel no serious danger from the vigilance I devote to my diabetes care. I’m also very aware that the sum total of my reward for this vigilance may add up to nothing. There’s no guarantees. What it will give me is the clear conscience that I did all I could to play well the hand I’ve been dealt.
I’m not anxious or paranoid about my diabetes care. In fact, for the time being, I am quite pleased with it. I enjoy a quality of life I didn’t feel before I devoted an extra level of care to these diabetes issues. I also know that I am atypical, but not alone, when compared to the larger diabetes cohort. I happen to like following my diabetes data and it does give me concrete suggestions as to helping me maintain a good quality of life.
In the end, we’re all dead. I get that. I keep no false sense that my vigilance will continue to reward me. But in the meantime, I like my chances with keeping my blood glucose more often in the normal range.
Let’s try this… hopefully it will help
Yes or No, is there some number in your head, which would be a pretty clear example of excessive testing. I’m not talking about a one time thing, to tweak some specific dosage, I’m talking about a habit of testing some X number of times every day… that would be WHOA… what the heck is that about, why test that much?
This is definitely one component of what I perceive as the choice issue I think Sally was intending. The absolute mandatory necessity to use the current technology, in theory to improve the quality of our lives. I believe, it is a mistaken idea in that, the data we get causes many (most?) problems. eg constant fear, avoidable worry, meaningful self doubt, or worse risks teaching many and is causal of outright despair (ie dia-cide).
I perceive a meaningfully different perspective I am trying to hone, and articulate. Appreciate your patience
This recommendation was published as part a 2014 position paper entitled, Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association
Recommendations
- Patients with type 1 diabetes should perform SMBG [self monitoring of blood glucose] prior to meals and snacks, at a minimum, and at other times, including postprandially to assess insulin-to-carbohydrate ratios; at bedtime; midsleep; prior to, during, and/or after exercise; when they suspect low blood glucose; after treating low blood glucose until they have restored normoglycemia; when correcting a high blood glucose level; prior to critical tasks such as driving; and at more frequent intervals during illness or stress. (B)
- Individuals with type 1 diabetes need to have unimpeded access to glucose test strips for blood glucose testing. Regardless of age, individuals may require 10 or more strips daily to monitor for hypoglycemia, assess insulin needs prior to eating, and determine if their blood glucose level is safe enough for overnight sleeping. (B)
- CGM is a useful tool to reduce A1C levels in adults without increasing hy- poglycemia and can reduce glycemic excursions in children. Glycemic im- provements are correlated with fre- quency of CGM use across all ages. (A)
I think this position is a reasonable starting point. These experts recognize that testing 10 or more times a day is clinically reasonable. I also think that during occasional periods of illness or stress that testing 20 times per day is not unreasonable. I don’t think it’s worthwhile to affix some number of testing frequency to equate with over doing it. If you’re testing four times per every waking hour, that would be too much in my book, but I’ll bet there is some limited circumstance that may even justify that, I don’t know.
If anything, testing more often and having access to tools like a CGM and pump has made me less afraid and anxious about diabetes, not more. It does require more work, but the payoff is less fear of severe lows and complications.
Beautifully written. My sentiments exactly.
Sigh. I will say that for the first few months after dx, I researched methods of suicide because the idiotic directions I was handed by my Doc (ADA effing guidelines) never worked…I found TuD and Bernstein…
I also concluded that I was so inept that I would bungle most methods and cause worse consequences for my loved ones…I seriously thought not eating might work until I read about what a horrible, painful death fasting is…Sigh again…
Hello Jen:
Having difficulty articulating cleanly. Thank you for exploring this one with me.
If I am relaxed, truly comfortable with something, either more or extra to me seems quite the opposite. Content by definition means comfortable as-is, not a bunch of extra.
I offer our tech deflects the fear of “bad stuff” but, does not ever eliminate it. And until the fear is totally gone… that fear is a tumor our fundamental approach does not effectively address. Maintenance is never cure.
To Sally7’s original question we don’t have to use any of it. Until all the readings it provides are serum blood draw accurate I have decent ground to stand on. Meters, CGM’s readings are just not good enough. http://www.diabetesnet.com/diabetes-technology/meters-monitors/blood-glucose-meters/glucose-meter-accuracy-problems and that is not ok.
An acknowledged, and well-documented nightmare. A piece of my fundamental objection I can pin down a little anyway.
First off I love that we all have such different and varied opinions and experiences which make life some much fun! I love hearing everyone’s thoughts on diabetes.
My take here and why I put this out there is Diabetes is mostly Mental. Is it a choice? It’s mental. Do you want or need to test right now, mental. (Yes some will say it’s physical and necessary but while I agree the choice comes into play here. I can chose not to test and treat or not treat. Choice, mental)
Do you take some insulin right now? Choice, mental? Do I want to go through the mental gymnastics to eat that wonderful hamburger or do I just want to eat it. Choice, mental.
Do I test often, yes. I am so afraid of complications as it was beat into me it was going to happen, not if might but it was going to happen. Talk about mental.
My mental makeup is one of failure and. Not being good enough. And my diabetes feeds those thoughts on a daily basis. Every number, every test, every “choice” feeds those thoughts. I again say is all this work a choice or a must do, should do or have to do? My diabetes has caused so much self doubt over the years and such a negative outlook.
And I agree with Stuart that we can get lost in the numbers. How many of us have been to groups of people with diabetes and everyone throws out their A1c numbers. Some so proud and pumped and those looking like their world has just caved in. It’s a number that gives you an idea of what’s going on. It’s not the end all to ones diabetes. I hate numbers, I hate math and I hate the fact that whenever I see a new doctor the first question is what was your latest A1C? I wonder if I didn’t have it done every 3 months if my treatment plan would change? Probably not. It’s more for the doctors to be happy and the insurance companies to control what we can or can’t have for out treatment plan.
Yes, going off on a tangent but I just wish we would realize how mental this is and how much I hate the technical nightmare my diabetes has become. And while I enjoy great health, it is a huge technical night,are for someone like me who likes low key. Choice, mental?
Hello Sally:
8 D
Outstanding… well said dear lady! Thank you…
Thanks for sharing your story, as it shows how we deal with things in different ways. I have never felt that diabetes is mental or considered my care as ‘choices’. I’ve always thought of it physically as a ‘broken pancreas’, similar to someone who may have a hearing loss, blindness, physical disability, etc. That’s how it was explained to me when I was young. Although back then there were no pumps, CGMS, BG meters. Just injections 1x/day and urine testing.
So the transition to doing multiple injections, then pumping, doing BGs 3x/day, then 6x then 8x was gradual over time. Then came CGMS. I was able to deal with them gradually. I can’t imagine someone that has to take that all on within days/months of diagnosis, so my feelings might be more like yours if I had.
I don’t consider my diabetes care to be mental or a daily struggle of “choices”. I think of them as healthy/personal care activities. Just like brushing my teeth, showering, tending to injuries etc. I’m just taking care of myself so I can enjoy to do the things I want to do. Many people have less things on their ‘care’ lists, and some have more. The key difference being insulin, as it is a life/death situation without it.
As for A1Cs, I think they are less important now for people that have CGMS. For me, my dexcom is accurate enough, that I test less frequently. My A1C is helpful to my doctor because he doesn’t review my CGMS data, and I don’t keep logs. Occasionally they will download my BG meter, but usually just to check for lows.
However, for those that struggle with trying to get the right balance of insulin / carbs / basal / bolus / exercise etc, or have frequent adjustments (as I did in earlier years), then logging and reviewing with doctor can be very helpful. But if logging is just going through the motions, then why do it ?
Have you tried setting gradual goals, rather than feeling every ‘choice’ should be perfect every time ? Can you consider it ok if sometimes you only test 5x instead of 8x, or log only exceptions/unusual situations and know that in the long run, it probably won’t make a big difference ?
Would you mind sharing how old you were when diagnosed, and how long it’s been ?
If somewhat recent, I’d encourage you to believe/be hopeful that it WILL get easier.
I was diagnosed at age 5, and it’s been over 50 years.
I have some complications, but still live normal and active life.
Fortunately, for someone diagnosed recently, I think the risk of complications is much lower than the published statistics, because the stats represent many who had situations similar to mine (very high BG/A1c) in the early years of (archaic) treatment.
Wishing you the best.
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