Thursday, June 27, 2013

I'm a Lumberjack and I'm Okay

Okay, I'm not a lumberjack. Because I'm in no way, shape, or form...a logger.
As patients, we're constantly scolded for showing up to doctor's appointments without logs. We're accused of being too far removed from our data. It's assumed that we don't log because we're not paying attention. We're not thinking about our diabetes. We're not doing our part. We don't take this seriously.

Yesterday, as I was changing my pod due to an occlusion that resulted from slamming my pod arm against a door frame two hours prior, I realized why I don't log. I realized why I can't find a logging app that I like. I realized why I can't even create a form I like even with my mad spreadsheet skillz.

There is just too much to log.

Whenever I've tried to create a form with the fields I think I need, I feel fairly satisfied until the first time I find information I need to log that I can't fit into a tidy space.

Submitted for your disapproval: my yesterday

  • CGMS reads low from 3am-7:30am. Husband woke me, worriedly, at 5:23am. Checked and registered 61 mg/dL. Groggy, I told myself I should get some glucose and....zzzz...snore...was gone again before I could treat.
  • Woke again at 7:30am. Feeling really low now, but don't bother wasting a strip to confirm a value. CGM buzzing and freaking out on me saying I'm below 55. Ate 20g of glucose quick sticks. Drank some coffee without my usual makeshift coffee insulin dose.
  • Breakfast bolus 6.05 units taken 10min before I eat (do I notate that I pre-bolused beforehand and how long?). Took additional insulin for coffee.
  • Bumped arm while taking out the trash. "Ouch."
  • Two hours later, high BG of 200 mg/dL indicates that the blow to the arm probably messed up my insulin infusion. Took lunch+correction bolus (10 units) as I ate lunch rather than pre-bolusing. Occlusion alarm happens about 5 minutes into the delivery and just as I'm finishing my 48g of sandwich and chips. Crap.
  • Also, I lost count of the chips because I reached my hand into the bag rather than carefully weighing the serving on my gram scale like I normally do.
  • I change out my pod, trying to notate some of this in my MySugr logging app.
  • I forget to take the remaining 5.30 units of the 10 unit bolus that I didn't receive (because of the occlusion) and the whole reason I forgot it is that I logged it before I did it and therefore misremembered that I took it. That 5.30 units would have come on board late after the meal and peaked at the wrong time anyway, but I didn't even get it. I'm 258 mg/dL an hour later. I check and correct with 2.75 units of insulin.
  • More coffee.
  • Two hours later at 2:48pm, I am inexplicably 434 mg/dL. Prior to the occlusion, maybe I didn't receive any bolus or basal at all? Was it the post-insertion insulin absorption that inconsistently affects pumpers after I changed the pod? Was it a problem with the new pod? Was it the coffee? Is my insulin spoiled? I take 10 units via injection. My pump says I need 11. I know that I'm going to plummet if I take 11.
  • My CGM alerts that I'm 258 mg/dL and dropping with double arrows down. I have 1/2 cup of sugar free pudding with a couple sliced strawberries. Should barely give me a bump, but it might stave off the bottoming out.
  • Pre-dinner, at 7:11pm, I'm still 215 mg/dL. I bolus 7.80 units for the 3/4 cup of rice I'm eating with my broccoli and protein. My injected Apidra I took at 2:48pm should be well out of my system now because its action is about 3.5 hours for me.
  • By 9:30pm, my CGM is going crazy that I'm low again. My husband slips me a cookie as I cuddle the kids to bed.
  • At 10pm, I stumble into the kitchen. I'm only 64 mg/dL, but my legs are jello and my feet are on invisible roller skates. I eat some glucose. I drink some juice. I eat lots of other stuff. I don't remember the carnage. How do you log regret?
  • At 11:23pm, I'm 201 mg/dL. I bolus 2.70 units and call it done. I'm afraid to dose that much because I drop through the night already and ANY insulin on board seems to do me in. But if I don't, I am going to be sick all night. I go to bed around 12:30am. CGM is flat most of the night in the 130s. I'll take it.
That's a day with diabetes and it's exhausting to live, it's exhausting to recount to you...let alone journal alongside the rest of my life 24 hours a day. Some days are admittedly much easier than this. Some days I am compliant with low blood sugar treatment recommendations, most days I don't have a pump malfunction, most days I weigh my chips. But some days I am spent. SPENT. I have a toddler and a preschooler. At every point in my day, I have something that requires more of my attention than I want to give over to diabetes.

What would a logbook look like if it could tell the whole story? What app could possibly accommodate that many deviations, exceptions, explanations? What would my medical team say when they reviewed it? What do they see now?

So I feel overwhelmed by the information and I don't log it. I let my team upload my pump and CGM data and pore over the results. I watch The Evil Genius highlight numbers and ask me why I was high three weeks ago Monday after lunch. I don't know. Probably some combination of THIS DISEASE SUCKS ALL MY MENTAL ENERGY and IT'S A LONG STORY.

I do understand that logging all relevant data would help us make decisions about my dosing rates. Just as you know that you should probably exercise 30 minutes a day and put your phone down more and turn off the television.

But health care providers make it seem as easy as:
Time ____, Blood Sugar ____, Medication ____, Carbs eaten _____.

And that's a log of crap.

12 comments:

  1. Logging is a bitch! It's damn hard work and it's all consuming. It's writing a million of your diabetes moments down every, single day - And Health Care Professionals think it's so easy. They are wrong.
    Xoxo
    PS: You are more than OK, your are FANTASTICAL & MAGNIFICENT.

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  2. damn it woman, you are right. on. the. MONEY. I don't have a logging app that i like right now, either, so I'm not, AND I don't download my own data b/c I use a Mac and none of the freaking downloading apps work on it. It's a conspiracy, I swear. and all the HCPs can just go log our data (not their own, but ours) in real time using one or more of the not-useful apps. so THERE. and get some empathy along the way. it is a log of crap.

    I love you, and you rock all of our worlds and are doing the best damn job you can. which is all you have to do. xoxo

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  3. I'm going to have that Monty Python sketch in my head all day, now!

    I agree with you that the numbers never tell the whole story, and numbers are often useless without the whole story, and it would take the entire day to log the whole story because it's our life story!

    Very little is more annoying than being asked about a random number from nine weeks ago. "I don't know; do you remember what you had for breakfast March 8th? Then why should I know why I was low at 2:37pm that day?" If my meter-remote didn't log BGs and boluses (that I take with it) I wouldn't have any data at all, not that I can download it because the software isn't Mac-compatible.

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  4. I didn't even THINK to take a picture of the PDM when I do pod changes,etc!!! Awesomesauce! :)
    But yes, I don't think there is a way to completely log every little thing that can happen. And my word... we spend enough time troubleshooting through the day... do we really want to keep our noses permanently dug into a log book/app? Heck, I'd probably need a tab for "logging stress" or something.

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  5. Ok, so how can WE (as a community) create an ap that allows for that much? And after we create it, how can we get our doctors to take the time to read it!! You know they wont!! All they want to see is the numbers, doesn't matter why the numbers are like that.

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  6. I think this post is EXCELLENT to teach people with misconceptions about PWD. I can't tell you how many times I've heard, "well they just take some insulin and they're fine."

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  7. I love you! I love this! Not even MySugr can really help us. (But it's the best App I've tried.)

    We could spend a few hours logging each day, and that would be sad. I prefer to use my D-obsessed hours reading D-blogs and going OH MY GOD YES YOU ARE SO RIGHT and other intense-agreements.

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  8. This is such a fantastical post, Melissa! The same happens as parents when we are asked - so what's the 434 two weeks ago about? She had THREE LOWS last week - that's too many. And by low they mean 60-65. Shit, that happens once a week around here as G swims and dances and well, has a life.
    I always reply - 'Life. Life happened.' - I don't know if it shuts them up, but maybe, just maybe, it makes them think a minute about it all.
    GREAT post. I am sharing.
    Thanks, hon.

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  9. Great post! It makes me feel less alone!

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  10. Are we long lost soul sisters from a different mother?
    THIS post, this WHOLE damn post, EVERY word and number and frustration is why I can't log.
    You're right... where the hell would we put all the information that goes along with every single god damned BG check?
    I've tried... and failed every.single.time at logging. No number makes sense on it's own. It needs to be understood with all the surrounding information. I couldn't even read through this whole post because my frustrations and sympathy pains were overwhelming.

    and this is our life right? EVERY.MINUTE.OF.EVERY.DAY!
    you, my friend, are awesome. I FEEL your pain.

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  11. So true. Unless I record something within 24 hours, that info exits my mind to make load for a ton of new D-crap.(and I hate logging,so that only happens right before appointments which isn't much help) And there's no way to possibly record every single minutiae of what could possibly be the cause of x,y,and z.

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  12. I'm exhausted from just reading this, and can't find the energy to write anymore :) What you and everyone else said, I agree!!

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