Public Knowledge

This is my first-ever contribution to the DMSA Blog Carnival.

Does your employer/school/friends know you have diabetes? Why or why not?

Most people I actually know are aware I'm diabetic. Details vary based on closeness, interest, etc, but for the most part, everyone is aware. While I certainly don't introduce myself as "My name's Brian, and I'm diabetic," there are inevitably occasions where my pocket is beeping, or I can't join in lunch, or have to check out of a meeting, or, or, or, and it's easiest to say "Diabetes" than to make up a filmsy excuse.

Even in the earliest days of my diagnosis, I would admit Diabetes. But while I was on shots, I was nervous about doing that in public. Even checking sugar, I would try to do in private. I have no problem using my pump in public, and I'm now comfortable checking sugar in front of others, but I tend to think if I ever had to go back on shots, I'd still be private about that. It's probably because you're more exposed with shots: it may not be clear what you're doing, but it's clear you're doing something serious.

But in just knowing, it's easier to put the knowledge out there. I've been fortunate in not having many run-ins with food police and even then, the convenience of not having to remember who knows what and who can know and that sort of drama far outweighs the annoyance of know-it-alls. There's also the benefit that, should anything ever happen, people would be better equipped to respond, if only to pass additional context on to first-responders.

So I put it out there because I'm lazy and it's self-serving.

Pauses

When first diagnosed, I was given three hard, numeric references for insulin. Not fluffy relative terms but absolute. rules. I like those. There's no room for interpretation. They just are what they are.

The first was a carb ratio. I would take 1U for every carb exchange. And one carb exchange = 15 carbs. That ratio quickly proved to be a little off, but it was a hard number I could work with.

The second was correcting. I would take 1U for every 50 points above 100 I was. That number, too, was fairly quickly changed in the real world but there it was.

The third I still struggle with. It was an explanation of how long after correcting I should wait to eat. From memory, it was something like:

BGnow	Dose	Delay
100	0 + Meal	Now
120	0 + Meal	5 minutes
150	1 + Meal	10 Minutes
200	2 + Meal	15 Minutes
250	3 + Meal	20 Minutes
And so on

The source of confusion, especially now, is my blood sugar doesn't change that fast. 20 Minutes after correcting with a blood sugar of 250 isn't going to put me anywhere near normal territory!

Logically, I can reckon that:

1. The extra insulin from the meal will lead to a quicker fall than the correction dose by itself.
2. A meal with fewer carbs will have less of a rebound than a meal with more, so you may be able to fudge and eat a little sooner that way.
3. And last, you don't want to be #bgnow 100 with 12U active (and active without lag)

But Novalog, for me, tends to take 15-20 minutes before anything appreciable happens to my blood sugar. And with a hypothetical 250, an hour is unlikely to put me anywhere near 100.

So instead of dealing with a reasonable 10 minute pause, I tend to follow one of three (including lows) algorithms.

For a blood sugar < 140ish

I dose whatever fractional correction the pump spits out at me and eat.

For higher blood sugars

I rage bolus the high, check sugar every 20 minutes or so and once it's fallen by about half eat bolus the difference between active and what I'm meant to take for the food.

And for low blood sugars

I tend to take a 30 or 60 minute square wave depending how complex the carbs are and eat now - because remembering to bolus at some indeterminate point in the future is not one of my strengths.

Over the years, I've been able to adapt the first two rules from the initial diagnosis rather easily but just haven't ever figured out how to incorporate the delays/lags/etc defined in the third into my regiment. I may have a system but it too often leads to a low or high a couple hours in the future. I'd love to one day figure out a math function to give me an optimal time differential for correcting & eating.

Approaching 24 hours with the Dexcom

The Dexcom was waiting outside the door when I got home last night, a day early. So I opened it up, reviewed the getting start process, plugged the receiver in to charge, and went about dinner and #DSMA. After #DSMA, it was time.

I'd worn a Dexcom for about 10 days a month earlier, in a trial through my CDE. (Note, sometimes I call her an Endo, sometimes a doctor, sometimes CDE. I don't really know. I don't really care. She does everything I need and is generally awesome.) I read the process of sensor insertion about half a dozen times and started. It must have taken 15 or 20 minutes to get it in OK. Getting the needle in went ok. Removing the insertion mechanism took some work. Getting that collar up as high as can be HURT. The entire sensor lifted up towards the middle and there was some blood clearly visible. But I did manage to remove the mechanism, and settle the sensor down closer to my skin. The pain was much more severe than when my doctor did it. I suspect that's just the learning curve, because she also did it much faster than I was able.

It was nearly time for bed once calibration was complete. But around 4AM, my wife woke me up because the Dexcom woke her up. (It had been going off for pushing an hour by then.) It was a 48. Confirmed and it really was low, so grabbed some sugar from the nightstand and went back to sleep. When I woke up for real three hours later, the screen looked like ____/----/`````. It said 140-something, but my meter said 104. But over the course of the morning, I had a stubborn but mild high that just didn't want to go away. In retrospect, I wonder if it really was closer to 140.

And now we're at lunch. I had a slice of pizza and salad. Started a square wave 10 minutes or so before eating, so had a slow descent and was in the high 90s while eating. But an hour later, I was still creaping up, past 150. Small correction and kept climbing. Repeat. Repeat. I managed the arrest it by 175 a half hour agp, so the Dexcom adverted a high. I'm flat or slowly descending at 166.

I can't know how I'll feel in 6 months, but for now, I love seeing this kind of information. Probably check the silly thing every 10 minutes. My immediate goal with the Dexcom is just to tighten the ranges. My A1c is pretty good (Labwork likes to warn me that with an A1c around 5.8, I'm at risk of developing Diabetes: HAH!) but it's only that good because I have far too many lows. If I can go from 60 being an every day occurrence to, say, once a week, and make the corresponding cuts on the high end, I ought to be able to hold an A1c in the high fives or low sixes, but hold that much more safely. It'll be the Dexcom's credit if that happens.

Feeling discouraged

It was early 2007 when I got a pump, the Medtronic Paradigm 522. The first month or two could have gone smoother but that was learning and growing pains. Stuff like dealing with the tubing. Or unlearning to pinch my belly before putting the injection in. Since then, I've dealt with a water-damaged pump, two other mysterious incidents where the pump would consume batteries in a matter of hours (for days at a time) but in general, it's all gone smoothly.

But these last few months have been harder. I've started to notice small scars or marks from the infusion sites that last weeks instead of days. As I've been more active this summer than I typically am, it's been a struggle to find fatty parts of my belly to use. And so, four years after starting pumping, I've been exploring alternative sites.

First was hardly exotic at all. I just went all the way to the edges. The infusion site was at my 3 and 9 o'clocks. The first time was on my left and it worked fine. But then on my right side, it could have gone better. Then I followed around to my back. There's little fat there, just two small spots above my hips. And again, left side worked, but on the right side, I struggled with high blood sugars and the infusion site came out with a bent tip.

Next, I tried using glutes. Pattern continued, left worked OK, right didn't work.

I've never been brave enough to try thighs. It's hard to imagine them working any better plus I'd need to shave. And I've heard of people using their arms but that makes me even more squeamish than trying legs.

So last night, being out of viable sites on my stomach, I tried the left side of my butt again. It went it, it didn't hurt, and I was relieved. My last 2 stomach sites have felt like beatings, so for it to go in relatively peacefully was a relief. Couple hours later, I went to bed with a blood sugar of 90.

I've slept better, waking up around 3AM but getting back to sleep. But at 6AM I felt like death. Checked blood sugar and was up to 414. Can't remember the last time I was that high. 350, but 400? Not in a while. I didn't even try correcting, went right to replacing the infusion site. And found the cannula sitting atop my skin. No wonder it didn't hurt!

The Dexcom should be coming in the next week or so, and hopefully that'll keep me from getting into that bad a place again. But I'm so discouraged about pumping right now. It's convenient and has worked well, but it's been so hard these last couple months to find usable sites and the rash of skewed cannulas isn't helping either.

Gadget Names

This probably puts me in the minority of the DOC: I don't name my gadgets.

I've got a Medtronic pump, a FreeStyle meter and soon, a Dexcom 7 CGMS. And I call them "the pump," "my meter," and "the dexcom." Some people seem to give them funny names, people names, etc, but mine are just descriptors of what they are.

That's all.

The Search for Fat

It was time to put in a new infusion site this morning. I searched, groggily, for fresh torso that I could sink it into but found I was somewhat lacking in usable fat. Every really juicy part of my stomach still has those red marks from sites past. I couldn't find a spot on my back that was assuredly cushioned enough. My butt has been too unpredictable and I've never explored thigh sites or other parts of my body.

So I did find a clean spot on my stomach, and it had a bit of fat, so I went ahead to use that. Did all I could to loosen up before releasing the needle, pushed the button, and POW: It hit me like a metallic fist of fury. It was one of those insertions that makes you want to puke in response. Luckily, it passed quickly and settled into something closer to the typical dull pain that the first few hours of a new site means. But, OW!

Luckily, it seems to be working. Been in for about two hours now and my blood sugar's 82.

People often look at me like I'm crazy when wishing to be fatter. I don't want a beer belly or anything like that, but it's incidents like today's that makes me wish I had a little bit.

Unsolicited Help

This afternoon, after work, I stopped to play golf on the way home. I've been playing for several years and have fun with it, but am not by any stretch good. That said, that late in the day the course is pretty slow and I started playing alone.

On the third hole, another solo player waved me forward and we finished the hole together. But as we started hole 4. he could help but offer advice on how to improve my game. A big part of what I like in playing alone is that not happening. But things being what they were, I tried to be friendly and try his advice. And truth be told, his advice wasn't bad.

A few more holes transpire, and another individual joins our little group (a large group ahead was causing us to stack up behind them). Luckily, he too wanted to impart his conflicting advice on me.

On the last hole, my swing went to hell. That's a good indicator my blood sugar has gone south. But the guys I was playing with didn't know that, so they just wanted to further help my swing. Yes, I'm swinging too hard, or moving my back, or any number of other defects you can so helpfully point out, but they're a symptom, not something correctable! Yet I said nothing.

As I saw it, the options were

1. Explain I'm diabetic and have low blood sugar and I'm off to the cafe to treat.
2. Keep diabetes to myself, stop playing, but carry on the last couple hundred yards with them
3. Keep playing, poorly, and then politely lose them

I choose #3. I don't want to advocate while low, and I don't want to spend 15 minutes insisting everything's OK while they finish. I resented having to choose at all.

And yes, I had reduced basals hours earlier, and had sugar for the game, but I'd run out a couple holes earlier. Just need to remember to bring more.

I like the support system the DOC offers. It's a support system I've opted-into. But this well-intention-ed unsolicited help? I can do without it. Not for diabetes, and not anywhere else in life. One day, I'll have to learn to more forcefully reject people's good intentions. I don't really want to be an island, but how about a really long peninsula?

Today the Dexcom adverted a high

Today was Applebee's Wednesday, that fabled day the developer group goes to Applebee's for lunch. And I got a bacon cheeseburger; one of the about three dishes I get there. I too often spend a few hours in the early afternoon around 200 after.

Getting back from lunch, blood sugar was about 130 and slowly increasing. But 40 minutes later, or so, it was accelerating towards 150. So I corrected. That slowed, but did not stop, the assault on my blood sugar. An hour later, it was accelerating towards 170, and I threw more Insulin on the fire. That stopped it and turned it around. I'm presently falling, quicker than I'd like, but a couple glucose tabs in 20 minutes and I'll be right as rain.

170 two hours after eating is nothing wonderful. But without the Dexcom, I'd be more like 210 or 220 right now, and those numbers are much harder to correct than a 170.

Invisible Illness Week

This is weeks late, but Jess did this and is actually what inspired me to set up this blog. And even if its late I still wanted to do it.

The illness I live with is:

Type 1 Diabetes

I was diagnosed with it in the year:

2004

But I had symptoms since:

several months before

The biggest adjustment I’ve had to make is:

Not trusting my feelings. I can feel fine but know something is off, or something can be off and I just don't believe it. There's a lot of second guessing.

Most people assume:

I did this to myself by eating sugar.

The hardest part about mornings are:

Lows. I'm so unbelievably groggy in the morning and with low blood sugar I'm stumped by getting up. Highs aren't fun either, but they lead to a bad mood, or maybe even feeling miserable, but not overall general dysfunction.

My favorite medical TV show is:

House, though I don't watch it tons anymore.

A gadget I couldn’t live without is:

If I had to pick, I'd say the pump. Might be reckless but I'd rather guess at corrections than know the number and be unable to do anything about it. (And sure, there are syringes, but this is hypothetical!)

The hardest part about nights are:

Being tired but not willing to go to sleep because sugar is off in either direction. I sleep bad when it's not right. I can sleep (and appear to be unusual in that sense) but sleep and rest are not inherently linked.

Each day I take a few pills & a couple vitamins:

Insulin. Don't take pills very reliably.

Regarding alternative treatments:

Exercise helps but I'm not willing to do a zero-carb diet & maintain the physical exertion necessary to have a chance at it.

If I had to choose between an invisible illness or visible I would choose:

Invisible. I vent sometimes, but its not because I want sympathy. And I choose to vent. With a visible illness, that's not a choice to the same degree.

Regarding working and career:

I work in an office and it's never been a big conflict.

People would be surprised to know:

Diabetes sucks because it requires constant maintenance. But at the end of the day, it's not as limiting as it may appear.

The hardest thing to accept about my new reality has been:

Initially, it was the crappy selection of diet soft drinks.

Something I never thought I could do with my illness that I did was:

Grew to adore Diet Coke.

The commercials about my illness:

I haven't seen many commericals about it but the magazine covers sometimes grate at me.

Something I really miss doing since I was diagnosed is:

Being reckless. Running off to something without wondering if I can run off to do it.

It was really hard to have to give up:

High blood sugar. It must have taken months after being diagnosed to not feel terrible at "normal" levels.

A new hobby I have taken up since my diagnosis is:

Cupcakes!

If I could have one day of feeling normal again I would:

Pie. Lots and lots of pie.

My illness has taught me:

To deal with life. Things don't always go your way. Tough. It's not your fault. It's not anyone else's. But you get to clean up the mess.

Want to know a secret? One thing people say that gets under my skin is:

"How's your sugar?" If it's gonna be a problem I'd volunteer it. Note, this is different than subtly implying I need to check my sugar.

But I love it when people:

Treat me as a person without diabetes.

My favorite motto, scripture, quote that gets me through tough times is:

Can't say I have one.

When someone is diagnosed I’d like to tell them:

Don't worry about all the responsibility people are warning you about. Take as good care of yourself as you can. No reason to fret about things you haven't even encountered yet. And get a pump. Now. I'll wait.

Something that has surprised me about living with an illness is:

Learning more about nutrition.

The nicest thing someone did for me when I wasn’t feeling well was:

My wife comforting me, when things just don't go right. It's calming.

I’m involved with Invisible Illness Week because:

I saw Jess's post and though, that'd be fun.