Brittle Diabetics: How many of us are here in tudiabetes.com? Let me know to support each other. Thanks and looking forward to know about you!!!

HI,
I and a type 1 brittle diabetic of 25 years I have insulin pump and a cgm both from Medtronic but the cgm those not work for me due the rapid changes in Bg. I would love to know how many brittle diabetics are in this website to talk about experiences, situations, suggestions for those of us who can not be put in a box to explain the unexplainable regarding our everyday bg fluctuations. Looking forward to hear from you guys.

Have a Great day!
-Ann

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Ann I have a different perception, not quite philosophy, though an evolving view which in time I hope will change for the better, and improve… I can hope anyway. Regardless, I offer a skeptical idea in response your question. Forgive me it is not entirely/well evolved as yet. I ask your.patience, I hope I will hone it better (and far more briefly)....


I propose that the "Brittle" idea only works fundamentally on a series of wrong ideas

Fundamental among them that "control" is in truth "real"

That control is not a comfortable, if unfortunate "illusion"


Now before you break out the hot tar and the feathers.... consider if we are labeled whether "brittle" or "non-compliant" or some other negative labeling concerning our self-care, our diabetes management. Once labeled in that way, burned with the giant proverbial red hot branding iron... nobody has to look any further than "...oh.... she doesn't try.... or he's not doing what he must to make "X" happen...". I ask how does one distinguish between either or those options and the possibility the given approach being used is actually garbage, and in fact simply does not work? [Gasp “they” could at times actually be wrong????]

There are basic concepts which do work in the generic picture, but when it becomes you or I personally, the generic gets tweaked awfully hard at times. The pretty dose formula has to be mutated beyond recognition.

If control were an absolute certainty "guaranteed" then why do any of us have lows?
If control were "real" (a solid unchanging thing) then why do complications develop?

For "control" to have any real meaning it must therefore be perfect control. ATI (Absolute Textbook Ideal) diabetes self management. Anything short of that literal ideal allows occasional lows, highs, some minor background problems of all kinds to evolve.

When they happen, even if randomly-rarely how do we then pretend that “real control” exists.? We are vigilant, doing the very best that each of us knows how.

I reject the label “brittle” and say come up with better explanations,-approaches that will work.
Labels that do not brand me, and call me a failure. Doctor you too share my blame…
Hi guys! I appreciate your time and responding to my post!

I respect both your opinions, thank you for that. I does noot bother me to be labeled as brittle which to me it means: I follow tight control and even with that tight control I can not explain the bg changes that I experience everyday. I have read a lot and DO TRY TO CONTROL MY BG's VERY WELL. MY RECENT A1c WAS 6.1 In my page I explained that I have and insulin pump, the CGM from Medtronic does not work for me cause it can not keep up with the bg changes hr by hr. I DO TEST 10 TIMES A DAY faithfully due to those sudden changes, that is why my prescription for test strips is 300 strips per month. As a diabetic of 25 yrs I am PROUD TO SAY THAT IN OPTIMAL HEALTH THANKS TO MY TIGHT CONTROL.
.
An example of my "Brittleness" of as you put it Not Good Control in a controlled environment: A couple of years ago when I was younger I was hospitalized due to keto-acidosis, 1 week in ICU and 2 months in the hospital. By the end of my 2 months I decided to signed myself out of the hospital for the following reason: been a control environment, control diet, control medication times etc.. the hospital required 3 continuous BG to be within a "normal" range" to discharge me. Well, with all that monitored and control treatment 5 days passed all around the clock monitoring and they were not able to get those 3 readings. That is when I decide to get out of the hospital, go back to the real world and start a path to have even better control. Another example was 5 years ago when I got pregnant with our only son, having a insulin pump I was testing 14 to 18 times a day keep a 6.0 A1c but was never able to keep bgs controlled. And let me tell you that was TIGHT CONTROL and even when I was bed resting in the hospital due to complications with preeclampsia nothing changed the Bg's fluctuated a lot too.
I am not trying to convince people about what brittlenes is (not good control as you put it) or not, or even the question as diabetics: can we achieve "normal ranges"? All I am seeking here is what we are doing now; bringing people together to talk about it. Not to condemn anybody or pass judgment; just exchange thought, opinions, experiences, ideas, advice or ways where people have found successful ways to deal with it and achieved better results. That is all!
Again, thanks for your input and your time!

Take care,
-Ann =D
Hi guys! I appreciate your time and responding to my post!

I respect both your opinions, thank you for that. I does noot bother me to be labeled as brittle which to me it means: I follow tight control and even with that tight control I can not explain the bg changes that I experience everyday. I have read a lot and DO TRY TO CONTROL MY BG's VERY WELL. MY RECENT A1c WAS 6.1 In my page I explained that I have and insulin pump, the CGM from Medtronic does not work for me cause it can not keep up with the bg changes hr by hr. I DO TEST 10 TIMES A DAY faithfully due to those sudden changes, that is why my prescription for test strips is 300 strips per month. As a diabetic of 25 yrs I am PROUD TO SAY THAT IN OPTIMAL HEALTH THANKS TO MY TIGHT CONTROL.
.
An example of my "Brittleness" of as you put it Not Good Control in a controlled environment: A couple of years ago when I was younger I was hospitalized due to keto-acidosis, 1 week in ICU and 2 months in the hospital. By the end of my 2 months I decided to signed myself out of the hospital for the following reason: been a control environment, control diet, control medication times etc.. the hospital required 3 continuous BG to be within a "normal" range" to discharge me. Well, with all that monitored and control treatment 5 days passed all around the clock monitoring and they were not able to get those 3 readings. That is when I decide to get out of the hospital, go back to the real world and start a path to have even better control. Another example was 5 years ago when I got pregnant with our only son, having a insulin pump I was testing 14 to 18 times a day keep a 6.0 A1c but was never able to keep bgs controlled. And let me tell you that was TIGHT CONTROL and even when I was bed resting in the hospital due to complications with preeclampsia nothing changed the Bg's fluctuated a lot too.
I am not trying to convince people about what brittlenes is (not good control as you put it) or not, or even the question as diabetics: can we achieve "normal ranges"? All I am seeking here is what we are doing now; bringing people together to talk about it. Not to condemn anybody or pass judgment; just exchange thought, opinions, experiences, ideas, advice or ways where people have found successful ways to deal with it and achieved better results. That is all!
Again, thanks for your input and your time!

Take care,
-Ann =D
I think a reasonable expectation/goal is readings that reflect time spent : 5% low but aware of it, 75% normal, and 25% high. I think never passing out due to lowness is good control given an A1c less than 7.

I do not think that a type 1 w/ an A1c less than 6, who passes out at least once monthly, who checks and injects 12 times per day, and is underweight has good control. I think that person has an eating disorder, that is OUT of control.

The "moderation in all things" is tricky--and realistic expectations. Having this thing is like having a 4 year old--your really need to keep track of them, feed them often, and do alot of well-child checkups. Having a pump is like having an infant---it takes even more time and trouble!
diabetes is ever changing, i've figured out that there is no good or bad just the balance you find in yourself to try and try again. The reality of it is that nobody is perfect, and as a diabetic we can only strive to be perfect but at the same time you can't beat yourself up about it. Sometimes the control is purposely out of control, and sometimes the control is intentional but still out of control. And certain methods of control can only work for so long before the equation changes on us again, sometimes due to the factors of life. In other words... diabetes sucks, just start each day brand new (why don't i ever listen to my advice. geez)
Ann-
You're diabetic. Plain and simple. You are under good control, obviously with an A1C of 6.1, no complications and a healthy birth. There is NO such thing as brittle.

T-1 37 years. 2 healthy births (6 lbs for one child and 6.8 lbs. for the second child). No complications. A1C 7.2
BG "swings...." This past month would make me the "Brittlest" if there were such a thing. Thursday 8/27 I was 22 at 5am and 485 at 5pm.... I had pneumonia and was on prednisone.

Drop the brittle - trust me!
Ann, I think that you're wrong about this-- even though, almost always, you're ABSOLUTELY RIGHT with regard to persons making this claim. :))

There is such a thing. But, I agree that somewhere between 98% and 99.9% of PWD's who claim "I'm Brittle!" are only using it as an excuse for inattentiveness, lack of knowledge, lack of working CGMS equipment, or (most common) failure to execute and follow through on the things they DO know about controlling bG.

All PWD's are unlucky, no one deserves this disease. But PWD's who are even less "lucky" than you (such as I), sometimes develop un-fixable counter-regulation problems. Of various kinds. For example, my liver will sometimes start blasting glucose levels for no reason at all. (Not illness, Not with any Hypos during preceding days, no changes in living situation or feelings.)

Here's another example: Although many Hypo-unaware people do recover their sensitivity by avoiding Hypos for a while (typically, in just a few weeks or months), a few people with lost awareness can't bring it back to any significant degree.

"Brittle", properly used, is short-hand for complications which make bG levels fly around, independent of well-known reasons (food, insulin, stress, rebound, illness, steroids, other drugs, and etc.) Most of the people who claim "brittleness" are not truly brittle, but it does exist. And, as mentioned by others in the Thread you mention below, such conditions appear to become more likely to Present with increasing age.

I am a lot older than you.
Aside from the philosophical discussion as to if someone should be labeled as "brittle" or "not brittle", I have accepted the term because I frequently see myself varying throughout the day with no explanation at all. The first respondent indicated that he is only brittle when he eats wrong. I wish my life were so simple. The last respondent said that she had one "brittle" episode on 8/27 when she had pneumonia. Being sick is another understandable reason for "brittleness".

I feel as if I am being condemned for accepting a term that describes the majority of my diabetic experience, whether it describes me or not. I am not excusing modern medicine by stating that variation is my norm and that I desperately would like to be able to look back at my day and say, "oh yeah, that makes sense. my bad." As it is, even though I have a top notch Endo, who is well recognized in the field, he has taken the years of data that I have provided and said that I am in the top 25% of his patients as far as risk of complications, but there is no formula that can relate carb intake, insulin intake, and bg in my history. What I get is, 'well, your A1C is good, so be happy'. However, on most days, I am correcting throughout the day and varying widely and don't know why. I have been told not to chase the bgs by nurses, but that has ended me in the hospital for dka or unconscience, and being revived by a relative or friend with glucogon injections or paramedics with a glucose push.

If this site has already placed a taboo on the word 'brittle' and probably run off anyone who disagreed, perhaps I could use the term 'frequently variant' and seek some support and advice from others that are still struggling to understand their diabetic experience. In my life, I can't remember a day where I varied by 5 points across 6 checks. Is there anyone else that has no idea or explanation for why their bg readings fluctuate constantly to the point of personal endangerment?

I can't take solace in my A1C because that is an average. That doesn't express standard deviation. If every day I have 2 hours of hypo and 2 hours of hyper, then my average is perfect. However, that does nothing to express the feeling of frustration at being out of energy and unable to function every other day, regardless of what I eat or how healthy I am. Can anyone say they experience the same, or am I alone in this?

I think I am going to start an appropriate discussion that really helps me to find some people with similar experiences. The discussion is going to read as follows:Is there anyone else that has no idea or explanation for why their bg readings fluctuate constantly to the point of personal endangerment?

Looking forward to hear from you guys!

Take care,
-Ann
Ann, I was also tee'd off by the presumption "A1C of 6.1 == great control". (A bunch of time below 50 mg/dL, killing millions of brain cells, combined with a bunch of time above 150, creating plaque and grunge in your arteries and body organs IS NOT GOOD CONTROL. Even though the resulting A1C test value would non-diabetic, in the 4's.) Rather than a starting new discussion, let's just emphasize this:

This discussion is for those members NOW LIVING WITH with 'Brittle' cases. What tactics do you use to get through the day? Others: Please DO NOT enter posts declaring that "brittle diabetes does not exist", or "I don't believe in it", we've heard that before.

"brittle" == wild bG changes without explanation from food, insulin dosing, the menstrual cycle, illness, drugs, unusual activity, or unusual stress.
Rick -
I do believe I said "GOOD" control with an A1c of 6.1
Highs and lows happen. that is part of being a diabetic.
Running 400+ for days on end or having swings from 22 to 500 on a daily basis is NOT good control, but that is not what Ann is describing. She is describing life as a person with diabetes. I see the brittle adjective as a cop out or a sign of weakness.
Erin,
As I said here I am new to this web page which allows a community of people like us to reach out to one another which I think is fantastic and through this discussion I have got one or two good advices or ideas that I definitely will try and see if it helps me

Having said that and with respect because I respect others; AFTER ALL THIS YOU AMAZED ME PEOPLE; WHAT WAS MY CRIME? CAN ANYBODY TELL ME? I just used a forbidden term in this blog. I DO NOT CONDEMN you; I AM AWARE AND UNDERSTAND WHERE YOU ARE COMING FROM. You are trying to share your thoughts and opinions with me and others and that is fine but coming after me, i do not understand.THE MOST BIZARRE FACT IS; THAT IT FEELS AS YOU WERE THE CRUSADERS AND I'M THE PERSECUTED ONE! GOSH, I did not even know it was a sensitive term and much less that it was going to rubbed the wrong way some people here for x or why reasons. I did not started this blog to annoyed you or anybody else who does not seem to see things your way. IT IS SUCH A SHAME BECAUSE YOU ARE ACTING WORSE THAN SOMEBODY WHO DOES NOT KNOW OR UNDERSTAND ANYTHING ABOUT DIABETES.

LAST BUT NOT LEAST; I WILL QUOTE FROM YOUR REPLY;"I SEE THE BRITTLE ADJECTIVE AS A COP OUT OR SIGN OF WEAKNESS" I UNDERSTAND THAT IS YOUR PERCEPTION BUT JUST TO BE CLEAR:
I WILL NOT ALLOW YOU OR ANYBODY TO IMPLY THAT BY USING THE TERM BRITTLE IS A COP OUT OR WEAKNESS! YOU DO NOT KNOW ME, MY CHARACTER, MY PERSONAL OR PROFESSIONAL ONES TO EVEN DARE TO GO THERE!

AS I MENTIONED BEFORE, I AM VERY RESPECTFUL AND EMPATHETIC PERSON TOWARDS OTHERS BUT IS NOT ACCEPTABLE TO EVEN INDIRECTLY ATTACK SOMEBODY IN THIS CASE ME WITH YOUR IMPLICATION. IT SHOWS POOR TASTE.

UNTIL THIS POST, I HAVE NOT TAKEN ANYTHING PERSONAL; I JUST BEEN TRYING TO EXPLAIN WHAT IS HAPPENING TO ME. I LOVE BLOGS, I STILL THINK THEY ARE USEFUL, HELPFUL, INSTRUCTIVE AND FUN BUT AT NO POINT NOBODY SHOULD USE ILL MANNERED REMARKS EVEN WHEN YOU FEEL REALLY STRONGLY ABOUT A TOPIC OR DISCUSSION. WE CAN AGREE TO DISAGREE BUT BEYOND THAT NO MATTER WHAT HAPPENS; WE ARE ALL HERE IN THIS COMMUNITY FOR A REASON AND ONE REASON ONLY: TO BE THERE FOR EACH OTHER SO LETS KEEP THAT IN MIND!

TO THE OTHERS THAT HAVE SHOWED SUPPORT, UNDERSTANDING,EMPATHY AND HAVE GIVEN ME SO GOOD POINTERS TOWARDS MY CGMP THANK YOU SOOOOO MUCH!!! IT COULD MAKE A GREAT DIFFERENCE IN MY TREATMENT.

I DO NOT HOLD GRUDGES SO I HOPE WE CAN KEEP DISCUSSIONS AND SUPPORT EACH OTHER!

HAVE A WONDERFUL AND HEALTHY WEEKEND!

BEST REGARDS,
-ANN =D
Ann,

Please accept everyone's apologies and try to understand that we come from a supportive place. If you prefer a blog-style format, you have that option on your page and can start a blog and moderate comments - meaning you don't have to allow people to post unless you approve of what they write. This topic was started, however, in the discussion threads forum, and our members often take that as a sign for open discussion, which includes healthy debate.

Secondly, please don't type in all caps. It's considered yelling on the internet. Obviously, you're very upset. I understand and I'm positive that no one in this thread (I know most of these people from my time here at TuD) meant to offend in the way we've managed to offend you.

You will find equally vigorous debate on topics such as "is the word juvenile diabetes outdated and inappropriate?" and "are we diabetics or people with diabetes?" - topics I never would have thought would be contentious. No one is suggesting that your experience is other than what it is. We're debating terminology here. Your description of your diabetes sounds typical - normal - not atypical, which is why I think Erin and others here are suggesting that the term brittle is over-applied.

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