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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Friday, June 30, 2006

20/20 Hindsight

20/20 hindsight is a saying often used to express the idea that if I would have had then the information I have now, I may have taken a different course or made a different decision.

I think that most everyone, to a degree, lives their life like that - using past experiences to help color their opinions or influence their decisions for situations at hand.

For a person living with type 1 diabetes, this phrase can take on a whole new meaning. The basic idea is the same, but it is magnified a million-fold. Not so much the concept of it, but rather the number of times through the day the concept is used.

How many times during the course of an average day, are we presented with a scenario where we don't know exactly what to do? Some mix of recently passed events (food, insulin or exercise), current state of things (stress, etc) and anticipated events.

Our recently passed events and anticipated events may also be strongly influenced by unproven theories. Ideas like "I've been high a lot today - is my infusion set working right?" or "my blood sugar is being 'stubborn' today".

Now, if we are being attentive, we can make our best guess (that's really all it is sometimes, right?) and see how things turn out. Storing that scenario with all it's variables, and looking to draw upon it and it's outcome the next time we run into something similar.

In one aspect, that is how life in general is - it's not much different for us, except that we have, quite literally, tens of thousands more "things" to store and remember each and every day.

I don't know about you, but I just don't have the synaptic connections for all of that. Sometimes I just simply don't have the capacity to remember how a particular situation worked out - even if it's one I've been in time and time again.

I feel a bit dim-witted when I am in a "spot" like that. Recognizing (again) that I've been here (in this scenario) before (again). Not having the slightest clue on exactly what to do, and feeling uncomfortably familiar with that feeling. Why don't I remember what I did last time? How come I can't remember if what I did last time turned out good or not so good? I know it was not a disaster - because that I would remember for sure (right?).

Then, however the situation works out this time, I have that "20/20 Hindsight" thing going on. "Well, maybe I shouldn't have had that last juice" or "I really should have eaten more for lunch" or "back off/ramp up on the insulin next time".

If I had the information then that I do now, I might have made a different decision or taken a different action.

But we manage to do pretty good most of the time. I don't know how. Maybe because we are constantly and continuously put into these scenarios all the time.

What if we tried to document all of the factors in those scenarios, the actions we took (or didn't take) and the outcome?

And what good is documentation if you don't reference it to help you as you encounter similar situations through the course of the day.

Let's literally imagine such a system. What would it look like? How would we record that information? How would we reference it? Do you have different "time points"? One hour post scenario, two hours post scenario, three hours post scenario, etc.

Where would we store it all?! There's no building big enough - and that's just me! And think about the growth rate!!

And what kind of cross reference system would have to be in place? How in the world would you find anything? Do you "red flag" those that didn't work well - or worked very well?

Let's see - I've got three components from scenario S-47563.876567, with a sprinkling of things from scenario S-27364.776453. I need an outcome at the two hour post scenario mark similar to O-47532.774987 because I'll then be doing something like S-11234.982245. At the end of the day I need to end up with an outcome of O-ALL.GOOD with no occurrences of O-OH.SHIT outcomes. Ok, got all that? So, what exactly should I do now?

It is, honestly, pretty impressive that we are able to do as well as we do.

Sure we get burned out and frustrated sometimes, but is it any wonder when you think about everything that's constantly swimming around our mind?

And on top of all that, we somehow find the capacity to live mostly successful lives too.

We are simply amazing.

21 Comments:

Blogger George said...

I really needed a post like this. I am constantly beating myself up for mistakes but you made me realize that It's a lot of crap for one BAD dude to remember!
I need to be pleased with all I have to remember and handle each day.
I must be doing something right, I am still here!

thanks Scott.

9:44 AM  
Blogger Kevin said...

I think you drove that nail in with one swing of the hammer.

Taking manual responsibility for a process that normally occurs at the cellular level is a ridiculous endeavor. Yet somehow we pull it off (to some degree) -- the phrase "horse shoes and hand grenades" comes to mind.

And your run down of the situations really makes me skeptical that a "closed-loop" external solution is really even a possiblility. I have a hard time believing that there is a SINGLE algorithm that can be used universally (for all diabetics, that is). Kinda frustrates me that JDRF is throwing so much money to this kind of research when it seems that cellular operations NEED to occur at the cellular level.

I'm trying to think of a good analogy for our contraints in "managing" our blood sugar levels: typing with boxing gloves on? I don't know, perhaps we could post a request for good analogies?

10:34 AM  
Blogger Scott K. Johnson said...

"Horse shoes and hand grenades"! So very true!!

Couple of things - take a look at Scott Hanselman's "Airplane Analogy". It's brilliant. Captures the challenges in a very clear and distinct way. A quick and entertaining read too.

I think as far as the closed loop stuff it has everything to do with delivery method. If we're delivering into subq tissue we'll always be dealing with absorption time and delays and insulin duration.

Now imagine some type of delivery system where the insulin is delivered right into the bloodstream. The action is almost immediate, and the duration is something measured in minutes (around 9 or 10) rather than hours.

It still wouldn't be perfect - but it would be a lot closer than you could get injecting into subq.

I love the idea of typing with boxing gloves on! I think a post looking for other examples would be a lot of fun. Have you seen my e-mail signature?

"Diabetes is like being expected to play the piano with one hand while juggling items with another hand, all while balancing with deftness and dexterity on a tightrope" - Marlene Less, 1983.

11:04 AM  
Anonymous Carol said...

Wow, Scott, you got this soooo right! Like you, I suffer from lack-o-logging. Much of that is because I always feel that whatever tool I'm using to log is inadequate to capture everything. So of course, I could design my own, but I feel inadequate to determine what the "everything" to capture is. Funny thing is, I have started logging my workouts, and have no problem with that. Seems less complicated somehow...miles, time, heart rate...check. I also suffer from bolus amnesia - not being able to remember how much I bolused last time in the same situation. Are two situations ever really the same? Great post, thanks for sharing your insights. Are you sure you are not inside my brain taking notes?

3:26 PM  
Blogger Lyrehca said...

I once said that trying to maintain tight blood sugar control is like being on roller skates on a wide road and that the skates keep veering you from the left side of the road to the right, while instead, the whole time you're trying to walk down the center of the road on the double yellow line. On tiptoe. Without skates.

5:15 PM  
Anonymous Anonymous said...

thanks scott, for your words, I'm having a very difficult time at the moment dealing with the whole diabetes things. I feel that just when I'm starting to be positive about things I get a right hook from out of the blue. I feel soooo frustrated, confused, out of control and I literally think my head is going to spin off. I really needed to feel like I'm not the only one out there.
Natalie

8:14 PM  
Blogger Angie said...

Scott, you are totally right about all that stuff, my daughter (14), has an awful time trying to keep up with how she did this or that from one day to the next. At school sugars are bad at home they are good. While visitng family out of town sugars are good she comes home and they go bad. What is right? what is wrong? We may never know. And bolus amnesia is common in my beautiful 14 year old. She can't remember if she did bolus. A neverending battle to say the least.

9:46 PM  
Anonymous Chrissie in Belgium said...

Hi Scott,

I always read you blog! It is great.

You say, "We manage to do pretty good most of the time. I don't know how."

I think this statement is very important. Most often I don't know how I manages something well - I have a hunch that a certain amount of insulin will work. Why? because a bit higher seems just all wrong and lower - no that will not work either. There is often no clear math involved, just ingrained experience after experience, after experience, over and over again. You feel it in your finger tips. Yes, but of course sometimes you get it all wrong. We then think we did something wrong - well maybe our body did in fact do something different this time. Yes, logging helps hammer patterns into our head. They go in automatically with the hammering. They are NOT consciously analyzed. I really am often amazed at how my intuition, which might go against logical thinking, can often proove correct! The body is amazing. Maybe one day we will understand it better, but until then it is important to "trust you hunches" and not always assume you did do something wrong.It is not always our fault, things happen differently. I have had diabetes for soon 45 years, so a lot of hammering has been inflicted on my body.

In your post "What else do they do" (which is about ketones)Heidi wrote some very interesting "scientific stuff". I posed several questions to her. I cannot send a comment or an email to her, requesting that she answer these questions since her blog only accepts other people who have blogs. I have real ketone problems. Could you do me a big, big favor and ask her to maybe answer these question - either as an additional comment in your thread or as a new thread in her blog, but I cannot communicate with her in her blog. I have tried several times, but it never works. :( I wish I could get some help. No doctors understand what happens to me - why I have very bad hypos after the ketones disappear.

2:34 AM  
Blogger Heidi said...

Reading this post made me think about the amount of information and variables that we have to try to take into account when making diabetes related decisions every day! You are absolutely right, Scott, we are amazing :-)

Chrissie, I am sorry that you haven't been able to make comments on my blog. I am fairly new at blogging so I still have a lot to learn about customizing my blog - so far I have just been running it with its default settings, but I tried changing that since I saw your comment here, so that now you too should be able to make comments. So far I haven't really got any idea about the cause(s) of your ketone problem, but I would like to look into it. Please, make a comment on my blog or drop me an e-mail at hrosenqvist @ gmail.com (remove the spacing on each side of the @ to get the right address).

5:49 AM  
Anonymous Chrissie in Belgium said...

THANK YOU SCOTT AND HEIDI!!!!!

I will send you an email Heidi. It really sucks that no doctor has ANY advice. Let me put it this way, I am not that happy with my "medical feed-back", but since my mediacal team has achieved very good results for many diabetics, they really have no desire to in any way change their "administrative methods" just b/c the rules don't seem to fit one wird patient....... I was so upset this morning when I looked at dlife info and heard about all the US progress. I tried to discuss the CGMS with my doctor told me that this was nothing b/c you have to control check the results anyhow...... What about the fact that I must wake up at least 2 times every night to check my bg, wouldn't the alarm functions be great. They tell me I monitor my bg values too much. I counter that I must check to see what the trend of the bg value is. Their total lack of encouragement sucks and sometimes I get the feeling that they are annoyed b/c I achieve a HbA1c of 5.5 without or contrary to their advice. Sometimes I really feel all is hopeless. I am so sick of fighting everyone...... I am Swedish, but currently live in Belgium.

9:28 AM  
Blogger Scott K. Johnson said...

Chrissie - I am glad that you and Heidi are able to communicate now. That's the thing about comments - you never know if the original poster will check back on them! You are doing a very good job with some unusual circumstances. You should be very proud of yourself with an A1C like that! I hope that you and Heidi are able to come up with some useful ideas.

Heidi - thank you for allowing Chrissie to e-mail you.

11:12 AM  
Blogger Sandra Miller said...

Scott,

This is a wonderful post.

You really highlight the fact that we're all just people here, doing the best we can with the information available.

There's just too damn many variables (both known and unknown) for any of us to achieve the glucose control of a fully functioning pancreas.

And that has to be okay.

Now yes, we do still log Joseph's bgs, food, boluses. And despite doing this, find ourselves way off at times.

While I like being able to refer to Joseph's log for historical info on carbs and food boluses, we tend to rely quite a bit on in-the-moment information: current bg, activity, and yes -- as Chrissie mentions above -- hunches.

We're not perfect-- by any stretch -- but Joseph is a happy, healthy, active kid with a fairly reasonable A1c and some mighty fluctuating bgs.

And you know, in my book (which has been revised over the last two years), he's doing fantastic.

1:12 PM  
Blogger Nic said...

Damn straight! This is beautifully said. Thank you.

Pretty amazing post.

8:08 PM  
Blogger Johnboy said...

Scott, sometimes I think the synapses make those connections in ways we don't even fully comprehend.

We have been faced these same recurring scenarios multiple times and the educated guesses are not that bad many times.

Like you, I go in and out of waves of devoted, semi-devoted and slack logging. Right now, I am punching it all into a meter and looking at the meters graphs and averages.

Even in a meter, a person can suffer from analysis paralysis on occasion.

Nice post, Scott. You have captured feelings that we all have.

6:46 AM  
Anonymous Anonymous said...

Thank you Scott for helping me contact Heidi! I REALly do like your blog. Each thread is pertinent. Each thread expresses what it is really like living with D. It is really nice to know that others are dealing with the same problems. Up to a month or two ago I had never read a blog. About a year ago I discovered ADA's discussion boards. Before that, through all my years of diabetes I never knew another diabetic. It is truly nice being able to share the thoughts, frustrations and moments of happiness related to diabetes.

11:26 AM  
Anonymous Chrissie in Belgium said...

Oh, i forgot to read mention that I read the "Airplane Analogy" which was great. You are like me - in your last paragraph you say that it is just not worth the time and effort to change food, you choose the 3subway". Me too, I eat the same breakfast and lunch almost every day. I like what I eat, it is healthy. I just cannot be bothered to calculate what insulin I should take for this meal. I do not consider this a hardship. This was my choice. At dinner I have about 10 different "meal" which I vary between. They all consist of a big salad or lots of vegetables and a protein source, such as fish, chicken, sometimes beef. For my husband I add a normal starch such as potatoes, rice, noodles,etc. In an excell arc I compare the insulin I have taken for each dinner meal type. It is nice to know that there is someone else out there as weird as me and just cannpot be bothered to count, count, count...... Every time I have been in a hospital I brought my food. Then they say - but you know you have to pay for it anyhow. They really don't get it, not even in a hospital!

11:44 AM  
Blogger J said...

Wow we are amazing I have always thought that but you have found the words to what I always try to say :-) love this post .. your amazing too

7:42 AM  
Blogger Scott K. Johnson said...

Thanks J!

8:50 AM  
Blogger KJ said...

AMEN!

This is an absolutely awesome posting! I love how you put it in words like that! You're awesome Scott!! You have no idea how enlightening this is, thank you very much!!!

10:42 PM  
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