FUDiabetes

For the parents

The "Parent Project"

Hi everyone.
I apologize I have not been here in a while. There was something I was working on, kind of a project. It took a lot of time and effort and I had to disconnect for a while to get it done.

To myself, I began referring to this as the “Parent Project”. It was something that came up for me, a tremendous and unique opportunity, which was absolutely perfect. I could not have designed a better opportunity. And it fit perfectly for what I wanted to do.

This thread is about 3 words I want to give the parents. Only 3 words that I want to give, that I hope can provide you with comfort and motivation.

I know you have two burdens. The first is the one that comes with the daily worry of what is happening and constantly having to fix problems. The day-to-day non-stop worry about what is happening.

And the other burden is the worry about the future. About what life looks like in the years to come.

I can’t do much to help you with the daily burden. I know that is something that everyone here is joining together to work on and help.

But I hope I can give you something for tomorrow. For the next 30 or 40 or 50 years. That is what this thread is about. It’s all about 3 words. But it will take me hundreds or thousands of words to set the stage and be able to give them to you.

It will take me a bit of time to get this all out. Bear with me. Hear my words and I will give you the 3 that matter most.

This has been an all-consuming effort for me. And now the only thing left is for me to share it.

A quick shout-out and thanks to Coach Cliff, who helps me channel my insanity, who never tries to talk me down off the ledge, but just makes sure I stick the landing.

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The Study

I found out about a unique opportunity to participate in a research study. It was perfect for me and I was very excited about it. It was a heart study for men my age who were considered “well-conditioned endurance athletes”. The study would include a treadmill stress test where you run-to-exhaustion. With oxygen consumption analysis, an electrocardiogram, blood pressure checks, oxygen saturation, blood analysis, the whole thing.

There was only 1 problem. For a run-to-exhaustion research study of well-conditioned athletes, obviously you can’t have diabetics in such a study. They might have issues, or blood sugar troubles, or who knows what other kinds of medical problems! I was very sad to know that a diabetic would not be able to do such a study.

So I did the only reasonable and logical thing, which was to participate in the study anyway. :man_shrugging:

To me it was a perfect test. I loved the opportunity to compare myself with people my age who were in good shape, had no medical problems, and were well-conditioned endurance athletes!

I think that’s ultimately where we really want to be in a comparison. Rather than doing a comparison of 1,000 diabetics with different A1C’s, or all sorts of diabetes studies like high-carb versus low-carb, or CGM versus BG meter, or who knows what else… Or comparing myself to people my age who don’t exercise.

No, this was the standard I really wanted. How do I compare to non-diabetics my age, with no diseases, who are in good shape? Comparing myself with the best and most healthy. Isn’t that a standard that is ideal for us all to strive for? Isn’t that what we would all want for our kids, 30 or 40 or 50 years from now?

And the part about “run-to-exhaustion”. OMG, I lit up at that! :smiley: It’s not like a race, to see who is fastest. This is about how to keep going, even when it hurts. This was a test of being stubborn. About the ability to suffer and ignore it and just keep going.

I may not be the fastest. I know I was not the best athlete in that study. But I sure as hell knew I was the most stubborn.

One of the things people sometimes lose sight of with endurance running - they think that endurance racing or training is just about being able to run a long time.

But the root word of endurance is “endure”.


en·dure
/inˈd(y)o͝or,enˈd(y)o͝or/
verb
1.
suffer (something painful or difficult) patiently.


Wow, how does that sound? Can I suffer and keep going? Can I suffer through something better than all the NDR’s (Non-Diabetic Runners) in the test?!? How does my heart look compared to all those perfectly healthy men my age when we are all pushing ourselves to our personal limits?

This opportunity lit a fire under me that you cannot even begin to imagine.

Now, I just had to get into that research study…

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It’s like a FUD version of “Grey’s Anatomy”…where Meredith purposefully puts Richard’s wife with dementia in the study group of participants who received the experimental drug and not the placebo!

I have SO many theories on how you got into the study…all of which I will not share bc I’m sure most of them are offensive. :smiley:

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Please feel free to offend me. I have not been here in a while, so my ego is much bigger than it should be right now. Bring me back down to earth as you see fit. :wink:

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Obviously the first guess is of the “Escape at Dannemora” variety…

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My hero!! :smile_cat:

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Of course not. :thinking:

Very dangerous. Too risky. :grimacing:

Of course, you did that. :rofl::rofl:

:heart::heart:

You might be in your own category on that one… :thinking:

I hope you haven’t gone off for a nap… I’d love to hear your three words…

And how it went??

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The Phone Screening

The first thing I did was email and apply for the study. I was in the right demographic they were looking for, males my age. So that part was easy. They contacted me and scheduled the next thing, which was the phone screening.

I really liked the phone screen. The questions were pretty in-depth and it felt intense as far as what they were looking for. They asked me things like average miles per week, current miles per week, miles per year, how long I have been running, total races, total mileage in the past several years, total marathons, how many races I had run the current year, how many marathons I had run in the current year, etc. It made me feel pretty good that I was able to give them straight answers, and that I could actually be considered a legitimate candidate based on my answers.

The next part of the phone screening was medical history. So…just the only thing I couldn’t be truthful about was diabetes. And when they asked me what medications I was currently taking. :shushing_face:

“Any history of diabetes?”

“Nope!”

:man_shrugging:

Really, everything else was legit. Non-smoker, no heart disease, no cholesterol meds, no other illnesses, no other medications apart from the diabetes stuff.

But I did feel really good about all the running answers I gave them, because it felt pretty significant to be in that group of people they were looking for.

So afterwards, the researcher said they would pass the information along to the doctor in charge of the study and let me know if I qualified.

A few days later I heard back, and I had passed the phone screen!

But the next part was that I needed to go in for a physical, with blood work (fasting) and a resting ECG. So that would be my next thing…

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@Eric This is just awesome! I’m waiting with bated breath for how the physical went.

When I graduated dental school I tried to enlist in the Navy. In the long application I “forgot” to answer the diabetes question, so they did schedule a physical.

There were no Bg meters, analog insulin or anything like that back then. I felt a bit high at the physical, so I ended up fessing up to it. The examiner thanked me and dismissed me.

You have more cajones than any diabetic around.

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I tried making it through an appointment with an orthopedist without telling them I was diabetic. I made it… but not without them drawing their own unfavorable conclusions to why I was bone white, shaking, pouring sweat, and rambling on in one long over-explanation. I knew my plan was not to tell them, and, as I sat in the waiting room, I realized I was covered in monitors and “Type 1 Diabetic” patches and all this other nonsense. I covered stuff, downed skittles in front of the nurse, and sweated through the appointment while my sugar came back up—all the while letting them think whatever they wanted about why I was behaving like that. I walked out of the door realizing just how loudly everything I did screamed diabetic and with a newfound respect for all the down-low diabetics out there.

Cajones and a few skills.

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The Physical

It’s pretty easy to pretend to be a non-diabetic on the phone. But doing it in person takes a little more planning and preparation.

They were doing fasting blood tests, looking at lipids/cholesterol, blood glucose, blood pressure, pulse, height/weight, BMI, heart activity with a resting EKG, etc, etc.

Seemed like the glucose test was trying to weed out any pre-diabetics, so they were definitely focused on that. I say “pre-diabetics” because certainly if there were any actual full-on diabetics they would not have gotten as far as the physical, they would have just told them on the phone and that would have been the end of it.

Since they were filtering out diabetics (among many other things!) I wanted to make sure my A1C would be okay. The physical was quite a while ago, but at the time I wanted to check and I did a home A1C test, and it was fine. They wouldn’t see anything there.

I scheduled my appointment for the afternoon. It’s a bit easier to have a few hours to get settled and flat instead of rushing there in the morning and trying to have your BG flat.

I had to remove my pump and Dexcom. Those might have raised some red flags for them! As it turns out, I would have to remove my pump and Dex a total of 7 times from the beginning to the end of this grand adventure. That is something I got extremely used to!

Not being able to have a pump, I used Levemir that morning.

Also, since it was a fasting test, I couldn’t show up popping jelly beans in my mouth if I was low! So I bought some bottles of water. Not the re-usable kind, but the throw-away plastic kind with a label on them that makes it obvious that this is nothing but water. And the night before I made some sugar-water and put that in the bottle. Taking a few sips from a plastic water bottle that looks like water would be perfectly reasonable to do at a fasting blood test.

I liked the water trick, and I would continue to use it in the months that followed. Point made, sugar-water looks like water! :wink:



I was flat and stable all morning, 80-90. But then driving down to the physical, the excitement and cloak-and-dagger nature of it all got my adrenaline going. I spiked up to 135, and I corrected and kept checking it. 30 minutes before I was 120 but dropping. Kept checking…

A few minutes before I was scheduled to go in, I was at 100. It’s now within “range”, but there is no way I should show up for a fasting test and be at 100. I didn’t want to be a “pre-diabetic”, screw that. I have been doing this too long to only be pre-diabetic. I did a small IM shot in the car and then headed in.

I did a lot of talking and time-wasting to allow the IM shot to work. It would have helped if I knew the exact schedule for everything, but they had forms for me to review and sign. And the EKG and BMI and blood pressure tests and all the rest of the tests, and the discussion of the treadmill testing that was going to be performed. So I wasn’t clear on when they would draw the blood.

I excused myself to use the restroom, but that was really just to test my BG. I was 86 and it was dropping down slowly…but you know what? If this thing is going to blow up, I didn’t want a small little firecracker, I wanted it to blow up as a huge explosion in my face. Screw that 86, this is an 18 hour fasting test, there is no way I should be 86! I wanted to be at the bottom of the acceptable range.

So I went back in and made a little more chit-chat. Small talk, lots of questions. Kept dragging out some time until I felt like my BG would have dropped enough to be ready.

Then I went for it and said, “Can we just get the blood tests done first and get that out of the way? Since that’s the worst part of all of this?” :roll_eyes: So I controlled the timing a bit more instead of letting them dictate it all.

Blood test done, then we went through all the other tests. Like I mentioned above, a bunch of things for them to test. When they were hooking electrodes on my chest, my stomach made a loud rumbling sound, almost like it was on cue. “I haven’t eaten for 18 hours!!”, I said. Just to emphasize why my BG would be right on the lower end of the range. (I really had not eaten in that long!)

After it was over, I just had to wait for the results.



A week later, my results came back and I got an email. Everything was perfect - cholesterol, EKG, BMI, blood pressure - check, check, check.

And my blood glucose number? It was 69, which she said was perfectly normal for an 18 hour fast. I had freakin’ nailed it!

In the email I was informed that I had passed the physical and had been accepted into the study.



Then my blood ran cold and I got chills…

What had I done? This was not a good mix. They were going to run me on a treadmill test that was designed to break me, where I was supposed to hit the stop button or wave my hand at them to signal I couldn’t go any longer.

And I knew I would never quit. This whole thing was a very bad idea. No good could come from it.

So of course I started training.

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I think any T1D who says they have NOT done this at least once in their life is NOT begin truthful! Lol

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Eric,

this is so awesome and couragious and totally insane. and i expect nothing less from you when it comes to exercise and food :rofl:!!!

thank you for sharing this with our community, and i am waiting with baited breath to hear the rest of this story as it unfolds. you are a truly UNLIMITED human being.

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@Trying Yeah, I can relate. But how many diabetics can actually prove it with a blood test?

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Me, too!!

And as for this thread’s heading, I think we can assume this means that despite being diagnosed w/ T1D at a young age, T1Ds can be UNLIMITED and live to tell their stories to THEIR kids, grand, great-grand, …, kids!! :slight_smile: A bit of bright news to the parents out there of T1Ds to lessen their worries.

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I have to tell you, there is only one reason I wanted to do this…

It’s just that I had to give some of the background and unfold the whole story, but I swear there is something important for the parents in all of this, and I will get to it. I hope they will hang with me.

There is a reason I did not post this under the exercise category. It really goes beyond that, but exercise was just my vehicle to get to it.

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I have no doubt they will, as will the rest of us!!! I also have no doubt we’re all in store for signicant results! After all exercise itself is only a means to an end, and used by many of us to achieve good health, mentally and physically :slight_smile: Of course, some (you) are more successful at this than others, but we all try! :slight_smile:

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Designed for Failure - the Mule vs. the Thoroughbreds

One thing about these kinds of tests is that in general they are designed for failure. They want to see an endpoint on both sides. If you can’t get to one minute, the test does not give them any data. And if you can get to the end, they didn’t find your breaking point.

They want a nice bell curve, with nothing on either end, so the intensity is gradually increased. At some point, they want you to have to stop. It’s either from exhaustion or muscle fatigue. That’s the way they do these protocols.

I might have been the least athletic person they had. A lot of the people they had are really good natural runners. They are thoroughbreds, built for running. And I am just a carthorse. A mule. I don’t have the bloodlines for it, I just work hard.

But there was something I had that none of the thoroughbreds had. The whole nature of the study and the physical they did, and the idea that diabetics could not be in this…

In my mind it setup as a war, a single T1 against all those genetically perfect NDR’s. It was not going to be a test of running, it was going to be a test of wills.

I could not control what any of them did, but I would not let any of them outlast me. They could try to match me, but they would not outlast me. And the only way I could guarantee they did not outlast me was to get to the end without hitting stop.

On every child’s name here on FUD I vowed that none of them would outlast me.

They could bring their legs and their pancreases and all they had, but I was willing to die on that treadmill. That’s what I was bringing.

This was deeply personal.

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That is hands down the best sentence I’ve ever read on FUD.

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This is the takeaway. This is the burden that every diabetic here must carry. But if we carry it well, there is no stopping us.

@Eric understands this to the bottom of his heart. It is not easy to truly understand, but it is essential.

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