Life in LADA land

Living Philippians 1:6 with type 1.5 diabetes

My least favorite question

I know, this is the third post this week. Don’t get used to it.  I just have a lot to say right now.

I figured out my least favorite diabetes question this morning.  It’s hard to say this because it comes from people who I know genuinely care about me and how I’m doing, but the question actually makes me feel worse, and there isn’t a good answer to it.  Here it is:  Are you getting better?

The quick and dirty answer to that is, well of course not, type 1 diabetes doesn’t get better.  Once those beta cells are gone, they are gone (reverse vaccine notwithstanding-it’s only in trial phases and is a long way from reality for most of us!).  So I’m not going to get better.  I understand that those who ask this  question probably mean to ask if I am feeling better, or doing better at keeping my blood glucose steady.  The answer to that one is decidedly difficult too, because it makes me admit that no, I am NOT getting better at controlling my blood sugar because it will never be completely controllable by anyone, even though I am doing the best I can.  My pump and CGM are amazing, and my medical team is incredibly helpful and sympathetic, but we all know that there is no way anyone can ever reproduce what my body is supposed to do on its own.  I cannot think like a pancreas perfectly.  I’ve said before here on my blog that I can do the same thing two days in a row and get opposite results.  Every Sunday is a total gamble (forgive the metaphor) since I have no idea what my blood glucose is going to do on any given Sunday morning.  I don’t think that my Sunday mornings are overly stressful (although I have no idea why this morning, for example, everyone felt that I needed to know that the building was too warm and could I fix that?) or unpredictable, but nonetheless, I never know if I’m going to end up high or low (rarely does a Sunday morning go along with lovely, steady blood glucose).

So, that’s it. My least favorite question.  What’s the right question to ask?  That’s a good question. It’s ok to ask “How do you feel?”, as long as you really want an honest answer.  Because I’m getting better at answering that question honestly.  You may see me first thing on a Sunday morning doing great, but by the end of the morning, or even an hour later, I’m beaten down by a horrendous high, or a sneaky low (that happened this morning – cruised along beautifully until about 10:15 when things turned south, FAST).  So my answer may be different every time you ask.  I may tell you I’m feeling great, or that I am low, or high, or frustrated.  My answer today will be different than my answer a week from now too.  So hang in there with me.  Diabetes doesn’t get better, or easier, or go away.  I guess that’s the lesson here – the condition of diabetes doesn’t change. Once you’ve got it, you’ve got it and it’s not going away (no, cinnamon doesn’t cure it).  I am just better some days at coping with it.  And that’s only by the grace of God.

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A day with T1D

So I’m totally poaching the idea that some other T1D’s came up with to tweet a day with diabetes.  I don’t tweet, so I just kept a written (yeah, I know, I’m way behind the times) record of all the stuff I did to manage my blood glucose over a 24 hour period.  Sort of like therapy during this really cruddy week.  I don’t think it worked to make me feel any better, but at least I have some perspective about how much attention this monster takes.  So here goes, with some explanation along the way for those who don’t know the T1D lingo:

6/28/2013

10:00 pm  Checked bg (blood glucose) – 69. Can’t go to bed that low, so ate about 10 g carb and re-brushed my teeth.  Restocked bedside stash of snacks since being this low at bedtime does not bode well for the rest of the night. Also needed to restock stash in the kitchen, so I don’t have to go searching for quick carbs when I’m low and can’t think straight.

10:04 pm  Checked Jiminy (my Dexcom continuous glucose meter) to see if it needed charging while I sleep.  Nope, so put it in it’s nighttime spot so that I can hear it when it buzzes.

10:25 pm  Jiminy still buzzing low, so ate another 5 g carbs.  No tooth brushing this time, too tired.

2:00 am  Jiminy buzzing – but now it says >200. Great.  Do a finger stick to check BG for sure (you are never supposed to dose based on the CGM alone – it’s usually pretty accurate but not always).  Yep, insulin needed and given.  As I go back to sleep, I’m trying to figure out why I went so high.  Clearly I over-treated my low.  can’t tell you how many times THAT happens. All you want to do when you are low is eat everything to make the hollow-headed feeling go away FAST.

3:30 am  Jiminy buzzes again, I knock it under the bed and have to go through major calesthenics to retrieve it.  BG still high with no sign of coming down.  Dose again.

4:30 am Jiminy still buzzing (now do you see why I named it Jiminy?).  Dose again, and working my brain trying to figure out why I am stuck so stupidly high.

6:30 am  Still reading a bit high on Jiminy, check insulin on board on my pump (That’s the amount of insulin still available and active in my system based on when and how much I dosed earlier. Nice to have a pump that figures that out for me, especially at this time of morning when my brain would NOT be up to those calculations.)  Dosed without doing a finger stick. Yeah, Betty, I know, I shouldn’t do that, but it was a LONG night and I was really sick of poking my finger.

7:40 am Awake, finger stick to dose for breakfast. Thinking through the morning’s activities (including some yard work)-is my basal rate on the right program? Yes.

8:55 am After 55 minutes of gardening, BG is 67 with a southeast facing arrow on Jiminy (which means it is still dropping slowly.  The arrows on a Dexcom are the most helpful feature of all – telling me which direction my BG is headed. That’s crucial to knowing how to deal with the number it shows.) Drink some water, rest a bit to see if BG will come up on its own (which happens most of the time after I swim).  This time, it doesn’t so I eat a snack and wait to feel normal again.  Drop to around 60 before heading up slowly.

10:00 am Check Jiminy to see how my snack worked.  BG 132. All is well.

11:15 am  Check Jiminy before heading out to lunch with a friend.  Feeling low-ish, but it says 128, so I sit tight. Lunch will be soon enough.

11:55 am  Check BG at the restaurant.  79. Yeah, I was a bit low, which makes me feel better to know that I wasn’t imagining the symptoms. Choose my lunch, estimate carbs, then try to assess if a regular bolus (insulin delivered all at once) or a combo bolus (insulin delivered over  a few hours) is better for what I’m going to eat.  I’ve ordered a salad, so go with the regular bolus (usually the combo is for higher fat foods which digest slower, so you need the insulin over a longer period of time).

1:45 pm Check Jiminy. BG ok.

2:20 pm Feeling a bit wonky.  Check Jiminy.  A bit low, so fingerstick to confirm, count carbs, dose and eat.

3:30 pm Check Jiminy. BG ok.

6:15 pm  Count dinner carbs, finger stick, dose.

8:30 pm Jiminy buzzes that I’m >200.  Reminds me that it has been buzzing since late afternoon that I’m low on insulin (<20 units left) and I need to change out the pump and infusion site. I’m probably low because when the insulin gets that low in the pump, it doesn’t deliver all that accurately.  Takes about 10 minutes to inject (sort of) a new infusion site, fill the cartridge with insulin, rewind and reload the pump and get everything set.  Dose to bring down my bg.

9:00 pm Decide to have dessert, so count the carbs and dose.  Probably not a great idea to have dessert this late, but it’s blue-black-rasp-straw-berry cobbler, so bolus-worthy and worth the number of times I’ll have to get up tonight to deal with it.

10:30 pm  To bed, check Jiminy and so far so good.  Go to bed knowing I’ll get buzzed eventually.

So, that’s 24 hours with diabetes. This list is long and I’m sorry for such a long-winded post, but that’s how diabetes is.  Very demanding, attention-sucking, and brain-draining.  I probably pulled Jiminy out of my pocket to look at it several more times during the day and made some kind of instantaneous decision about my status, but I didn’t write those down.  Believe it or not, it helps me to see all of this written out, if only because I realize I AM spending a lot of energy dealing with this, and so it’s not surprising that I’m tired.  So maybe it is good therapy after all.

 

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Confession

I’m weary.  Discouraged.  No, not discouraged exactly, it’s more like my mind and my body have had enough.  Enough of what?  Really, I’m not sure, but I think it has something to do with having to think like a pancreas all the time on top of the rest of life. So if there is a name for that, that’s how I feel.

Nothing significant triggered this. In fact, things have been going relatively well number-wise with my blood sugar, my last blood work-up and my A1C.  All those numbers are in ranges I am content with, and perhaps just as importantly, my doctor is content with. But I find myself just not wanting to do the next diabetes related task.  I’m tired of the Dexcom buzzing at me after an hour of gardening and I just want to ignore it and keep going.  I’m tired of “Fur Elise” coming from my pump reminding me that I have less than 20 units of insulin left in it and need to do something about that.  I’m REALLY tired of counting carbs and dosing before I eat anything.  But the consequences of not responding to all of these demands is far worse than dealing with them. Something about being between a rock and a hard place springs to mind….

The only part of this that has been encouraging is that apparently I am not alone in these feelings this week.  Just as I wanted to sit down and cry for no apparent reason, I came across a blogger that I respect and she had posted a video about wanting to break up with diabetes.  You should watch this, really.  And then I read another of my favorite bloggers and she too is done with diabetes.  There must be something in the air this week.  It’s nice to know (in a perverse way) that this is a common experience and that I’m not a total wimp.

Climbing out of this hole is turning out to be difficult.  People ask me how I feel – I have no idea how to answer that question. Really.  I feel………tired, defeated, consumed by the diabetes monster, distracted, and yet at the same time I know that I am doing basically a good job of managing this disease. Talk about a split personality! But if I tell anyone that when they ask how I’m doing, they’ll never ask again. If I just say “it’s complicated”, that sounds vague and stupid.  But really, it is complicated.  My feelings, and managing diabetes – both are complicated.  So I don’t have a good answer and I usually just say, ‘well, today’s not so bad’ or something really awkward like that.  The thing about diabetes is that asking someone how they feel at the moment isn’t really relevant.  I might feel great at the moment, but I’m always waiting for the next problem to crop up.  I really appreciate the people who come to me and tell me they are praying for me.  That’s huge for me. I guess it’s huge for anyone, and maybe that’s the lesson I am supposed to learn.  The thing is, I count on the fact that that person really IS praying for me.  Right now, I’m finding it hard to pray for myself, so I need those prayer warriors to be at work for me.  And I know I need to be praying for others dealing with much greater challenges than diabetes.  Maybe that’s the way out of the hole.  Praying for others and asking God to take my eyes off of myself and put them on Him.  He is the great Healer, not just of bodies but of hearts.  And my heart needs some healing.  OK, I’m signing off now. Gotta go spend some time with the Great Physician.

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