Yes, we are all familiar with this annoying, frustrating, roller coaster ride. I found this book that has explained to me the why, and the how to try to control this roller coaster beast. I have my copy in my Kindle. It is cheaper and more accessible that way. I keep my diabetes books in my Kindle for obvious reasons.
Sugar surfing by Stephen Ponder is also a good read, to learn how to tame the T1D beast. He started with a website, and then wrote much of the same content in the book.
Sugar surfing is an excellent book. The author emphasized the importance of DYNAMIC CONTROL vs. static control (old school). Amazing how some doctors still uses the static control system. Iâm holding back hard on my emotional reaction to this static system.
Classic books are THINK LIKE A PANCREAS, PUMPING INSULIN, ETC. Keep discovering good books. The technology is growing and improving and so are the authors. Itâs good to keep abreast with the latest CONTROL techniques. Iâm happy to say that a lot of the members here are up to date. We are lucky to be members of this community. I take this opportunity to thank all the active participants of this community. God bless.
Since the bodyâs response to insulin and calories varies with hormones, stress, and other factors intrinsic to the natural variability of physiological processes patients can neither measure nor anticipate, blood sugar levels are naturally a rollercoaster. And yet still, some people are governed by a regimen that requires a doctor, far away from the scene and responding after considerable delay, to authorize changes in the insulin dose. Also, you still hear people saying that they âfinally got their blood sugar levels under control,â as though there were some sort of permanent solution to its variability.
One Canadian Senator justified not being present in the Senate to do his job but being in Florida on vacation instead because his doctor advised him that he âhad to go to Florida to get his blood sugar under control,â because, as we all know, once under control itâs all fixed. Part of the problem is that doctors are used to titrating the dose of hormone supplements in output deficiency diseases like hypothyroidism to get just the right dose and then breath a sigh of relief, and so that type of thinking carries over, inappropriately, to diabetes management.
Is there hope that the time will come when most doctors will realize that our diabetes is really never fixed. That it is a daily battle. If you can put a number to doctors who are practicing dynamic diabetes control (daily battle), how many in percentage are these doctors. Wild guess allowed.
Are you feeling burned-out controlling the diabetes roller coaster? This book might help.
It is more than astonishing that endocrinologists and other doctors who deal with diabetics never read diabetes patient message boards, where they would discover more in a day than they will otherwise ever know about the disease.
Also amazing are most nurse CDEâs are not interested in diabetes communities on the internet. I ask them about it and they are not aware or not interested. This just tells us that we are on our own when it comes to BS control. I realized that right from the start when I asked my doctor to start me on insulin and he told me that 7.9 A1C is borderline and ok.
This is one symptom of the disconnect between diabetes patient and doctor. As long as they view us a the subject of their professional interest, they fail to understand the fuller context of our existence in our everyday world.
Our diabetes exists within our family, student, work, hobby, spiritual, and emotional lives. Some docs are more naturally empathic than others and they do get us. Most however are simply ignorant about what we face in the world each day as we occupy many roles and try to pay attention to our diabetes.
I donât use "ignorantâ in a bad way here; we are all ignorant to some extent. Unfortunately, I donât think our diabetes docs understand the nature and depth of their diabetes ignorance.
I know youâve suggested that our doctors would be well served shadowing a diabetic through even one weekend. I agree that that would help. I also think that the professional doctor associations should make some room for patients at their professional meetings.
Iâve had a personal fantasy of a robust computer diabetes simulator that would allow for insulin dose timing and size, meals broken down by their macronutrient constituents, and exercise. This simulator would allow plenty of time for the user to select inputs but then would play out in accelerated time to show the BG trace of their expert decisions. Iâd love to see the output of this simulator in a giant screen visible to their professional peers.
Our docs give us all kinds of treatment guidance and advice but rarely get the real feedback about what their recommendations mean in the real world. I would love to see other diabetes professionals use this simulator, like dietitians, nurses, and diabetes educators.
The âgameâ we play with diabetes is much more complicated than most doctors appreciate. I think a simulator like I describe would not only elicit some appropriate humility but also provide valuable lessons.
I admired the wisdom embedded in this concise slogan I read recently in a diabetes advocate context:
Nothing about us, without us!
I have noticed some increasing humility about managing blood sugar levels in the medical profession in response to the failed efforts so far to develop a closed-loop insulin delivery system, since this taught them how impossible the sugar responses of the body are to anticipate or control. The first step came when they realized that they would have to design new, faster acting types of insulin if such a machine were to work, and then, that they would have to supplement insulin by glucagon to add some âbrakesâ to the insulin âgas pedal.â
I wonder if any of them thought at that moment of how wrong they had been to have scolded their patients for not being able to control their blood sugars perfectly with the old Clear and NPH insulin regimen? I remember my first week of training as a new diabetes patient at the Joslin Clinic in 1966 and one professor from Harvard Medical school shouting at us that he didnât see how on earth it was possible ever to have a blood sugar in the 200 mg/% range, since that :was more than twice what a single human requires to function!" But that was in the days before home glucometers. The real question is, why shout, blame, and scold if you donât know what youâre talking about?
Exactly Seydlitz, shouting, scolding, etc. when theyâve NEVER tried to walk in our shoes doesnât work! I love the book that Adam Brown, a diabetic wrote, Bright Spots and Landmines. In it he explains how the current tools to manage diabetes make perfection nearly impossible. I love the example he gives about controlling the roller coaster of BG control. âImagine a car with a 60-90 minute lag between steering the wheel and the car meaningfully changing direction, and a full 3 hours or more before the car stops turning. It would be ridiculously difficult to drive safely. But that is the same delay we have with current injected rapid-acting insulins: a 60-90 minute delay before they peak, and a duration of action that lasts three hours or more. Keeping the car on the road-my BG in-range-is tough with that kind of steering wheel!â
We have to keep a healthy perspective. Perfect non-diabetic blood sugars are challenging to navigate or even achieve. Learn to appreciate the strength youâve had to survive even a single day with diabetes. We are all stronger than we think!
Another book arpida_seru that I just love is Bright Spots and Landmines by Adam Brown. Heâs a diabetic and has years of lessons and tips for how to make this journey with diabetes!
Another bad experience I had immediately after I was diagnosed and was being trained in the management of the disease at the Joslin Clinic in Boston was of a nurse screaming at all of us in the class that âthe problem with âyou peopleâ was that 'you just donât have the guts to inject yourself at a 90 degree angle to the skin, straight in, to get full effect!â Sentence after sentence began with the phrase, âyou peopleâ as though we were all obviously social pariahs.
I have seen so much of this sort of irrational emotional abuse of diabetics over the years that I suspect we are threatening the medical professionâs sense of power and prestige, since we are incurable, so they respond with a compensatory aggression to us, to forestall our shaming and blaming of them for not finding a cure, now almost a century after the discovery of insulin. In fact, doctors should bow and apologize when they approach a diabetic patient, given their failure to come up with anything really significant in all this time.
I was diagnosed in the Spring of 1950 at age 12. I have always felt that it would be impossible for medical personnel to fully understand how I feel and the problems I am experiencing without actually being in my body and thats how I approach them. Even endos who have Type 1 themselves donât live in MY body nor do they live MY life. Most of them try to help as best they can and as best we try to explain ourselves . Its still the âpractice of medicineâ and our job to interpret and apply whatever information they impart however imperfect that is. We can learn much from each other but lets not beat âthemâ up too badly.
Weâre not beating them up too badly.
We are just calling it the way we experience it.
We live in an imperfect world.
Itâs up to each and one of us to make it as âperfectâ as we can.
This forum is good for us.
It is like GROUP THERAPY.
So whoâs next?
.
My name is Arpida_Seru
I Have been an insulin addict since 1991âŚ
And so the story goesâŚ
I appreciate your comment/position. I agree with you that the forum is good for us and to me is a wellspring of information much of which I can use to improve both my processes and perspective.
Thank you for pointing out that my wording was a bit of a stretch.