« Graduate Student Needs Our Feedback. | Main | Guest Post From Fran Carpentier. »

Diabetes Rebellion.

The first rule is ... test!When the Dexcom sensor goes kaput, I usually take a day or two off before slapping a new one on.  Sometimes I want to let the site heal a bit and reuse the same location, and other times I just want a quick break before committing to it again for another six days or so.

Most often, these "days off" fall on the weekends.  I usually put a new sensor in on Sunday nights or Monday mornings before work and wear it straight through to Saturday morning. At work, at the gym, and throughout the night, that sucker BEEEEEEEP!s when I'm high or when I'm trending low, and I react accordingly.  I don't test as often on these days - maybe five times a day versus my pre-Dexcom 11-15 times - but I feel like I have a good handle on things, for the most part.

So why is it that, on weekends, my blood sugars fall to pieces?

I can't figure it out. 

And then again, I sort of can.  Over the last month or so, I've become like a diabetes rebel on weekends.  I go to bed at two or three in the morning.  I sleep until 11 am.  I eat French Toast (with sugar-free syrup, but still - holy carbs) on Saturdays and my intake of coffee is as constant as insulin.  I skip the gym and watch tv and generally become a lazy bum.

And, of course, this all goes down when I'm sensor-free.

This particular weekend, I had a glorious 374 mg/dl and a sneaky 38 mg/dl.  We went to the movies on Sunday afternoon to see Valkyrie and I hadn't tested recently before heading into the movie.  During the course of the film, I felt extremely sleepy and felt my eyelids becoming heavy at times.  After we drove home, I tested and saw a grim 374 mg/dl staring back at me.

Fantastic.  "I felt this one, yet I still didn't test.  What the hell is wrong with me?  I'm pissed - it's like I start sliding down that slope and it all goes amuck."

"Did you bolus?"  Chris asked.

"Yeah, I just did.  I just feel stupid."

"You'll come down.  It's okay."

A few hours later, after hanging out at the house, I tested arbitrarily.  I felt completely fine - no headache, no sweaty forehead, no shakiness.  I wasn't pale, my eyes weren't heavy-lidded, and I didn't feel lightheaded at all.  Yet a 38 mg/dl was the result that greeted me this round, and I didn't feel even a glimpse of a symptom.

Tested again and confirmed:  34 mg/dl.  Definitely low.

I drank juice, I sat on the couch, and I waited patiently (or at least patiently for me, which meant I didn't throw anything).  And as I waited for my blood sugar to start coming up, the symptoms came slamming into me.  I was dizzy, to the point where I felt unable to stand up.  Chris came to talk to me and I couldn't string a sentence together, only able to communicate in short bursts.  "Low.  Yes, drank juice.  Waiting.  Love you, too."

From 374 to 38 - a drop of over 330 points.  This doesn't feel good and it isn't healthy for my body, yet it happens sometimes.  Even when I'm paying attention and "following the rules," there's still something I've missed.  I didn't test often enough.  I neglected to account for some of the food I ate.  I took the weekend off from the Dexcom.  I'm battling myself.  It's a diabetes Fight Club.  (The first rule is to not blog about fight club, but I've already blown it.)

I'm feeling frustrated these days and I'm not sure where to go from here.   But at least with this kind of rut, I can flip things towards "change" at any moment.  All ... I ... need ... to ... do ... is hit the switch.

Comments

While I have no CGMS, I feel your pain. 52 @ 3am, 440 @ 7am. Not good!

Keep up the good fight! That hypoglycemic unawareness is a scary thing. I watch my sister-in-law and mother-in-law (who also has alzheimer's!) go through this regularly.

I just want to cure this darned disease! The only way to do it is by replacing the beta cells. My lab is working on stem cells and xenotransplantation. The latter (with pig islets) has entered clinics around the world!!

But rest assured, the animal rights fanatics will try to interfere again by claiming the procedure is unsafe to the general population. That's why I am trying to make sure we have a pig we can say is totally safe.

I am trying to do this in a non-profit way, appealing to the grass-roots level. If pharma gets ahold of the pig it will make the treatment WAY too expensive, or they will kill the project.

Can you or any of your readers make a small pledge to our project at the University of Minnesota? http://www.thepoint.com/campaigns/safe-pigs-to-help-cure-diabetes

The pledges won't be collected unless we reach our goal ($150K).

Thanks for you help!
Scott

As annoying as it may be, it sounds like what you may need to do if you need the "day off from the CGMS" is to start sensors on Wednesdays or Thursdays, so you have warning of these things over the weekends, and take the "day off" during the mid-week where things stay relatively normal.

FWIW, other than a very few carbs' and calories' savings, comparatively, I completely miss the logic of putting sugar-free syrup on French toast, pancakes, or waffles. Then again, *if* I choose to syrup those treats, it's with a sparing touch of Grade B Maple Syrup (stronger taste).

Woah, Kerri, I know what you're saying! I have very frequent "vacations" from diabetes reality over the weekends that make Monday mornings harder than they need to be. I feel your pain and am with you on hitting that "change" button....in 3....2....1.....

Hi Kerri,

I have been following your blog for awhile now and have been living with diabetes for 36 yrs now. It seems your weekend was like mine a couple weeks ago. I have very good control (last A1c 5.9) but sometimes this nasty disease likes to sucker punch you when you least expect it. But you have to keep fighting.... I am an avid cyclist and believe that exercise is the key to good control. When this disease gets me down I like to watch this video about Lance Armstrong's Livestrong Foundation.
http://www.youtube.com/watch?v=1Wv76pyJt5A

While diabetes is no comparison to cancer it's his attitude that gets me going. Keep up the good fight Kerri and never give up.

Kerri,

I’m sorry to hear about you high/low experience. When this sort of thing happens to me, quite often I can trace it back to an inconsistency in my workout program. I’ll have a rally crappy day and suddenly if occurs to me-- I haven’t worked out for 4 days. There’s always a reason for stuff like this: bad carb counting, air bubbles in your infusion set line, absorption issues, and so on. One of the most important things I’ve learned over the years is to not underestimate what exercise can do for managing diabetes. I hope today is going much better for you. Take care.

-Kirk

I went to bed at 104 (box worthy even) and woke up at 235 - for no apparent reason.

Forget the pain in my toe, this is a pain in my A&%.

We tried the SF syrup for the first time this weekend with Kacey. She loved it! She also had one of those sneaky lows...48, her lowest yet. She didn't feel any symptoms either, only hunger and it was lunchtime anyway. Scary feeling! She hung out in the 200's later in the evening. We'll join the fight club with ya! LOL ;)

Ugh, Kerri. Rough weekend.

So what did you think of Valkyrie? Good? Bad? *smiles*

Have a good week.

I find the movies make my BG sky-rocket! hmmm...tough one! I'm also with you on the vacation weekends! Up late.. sleeping in.. yummy breakfasts.. yeah, you know it. The doctors are so unsympathetic, too... "try to keep your usual routine", they say... like it's soooooooo easy! haha

I wish I could offer a magical way to beat the frustration because then I could use it too. Lately I've been in exactly the same kind of funk (except for the fact that it's weekday afternoons where I'm mainly coming apart!)

I wish this could be easier for all of us, but it helps to know I'm not alone.

Hope things straighten out for you soon.

It's a drag, isn't it? I had a similar problem - Friday night immediately after eating I sky-rocketed into the 300s. Thought it was the wine I drank - but turned out to be a bad site. An hour after I changed it, the graph on my CGM did a steady fall. I woke up a 5:30 am with a blood sugar of 38 & felt like crap all day. Then, dinner Saturday night, I guess I over-estimated the carbs in my french onion soup. CGM said I was 96 but falling fast. Finger stick said 35. Two readings in the 30's in one day. It took me all day Sunday to finally feel better. *sigh*

Here's hoping next weekend goes much better for us both!

I had a cold this weekend and really wanted a steak sandwich and milkshake. I thought I would let my son Alex (type 1) have some comfort food too. Thought I calculated the carbs somewhat close. Two hours later he was 364!!!! Me and my comfort food cravings. We feel your fight!

Kerri, I'm so with you on what you're saying! I have been experiencing a lot of unexplained highs so upped my basal. It seems to be working except the first evening - Sunday night - after dinner I tested before bed - 2.5 (mmol/L), retested 2.4 - no symptoms but definitely low. Then as I sat eating my lollies the wave of dizziness rushed over me and within five minutes I was bathed in sweat. As a bonus woke up feeling very groggy with a 10.7 mmol/L. This can be very frustrating and I am so glad to hear your stories to find someone else dealing with the same thing. And your year of the log has inspired me - I just need to find a 'log' book :)

wow sorry to hear about your bad experience with all of this the high and low thing . I hope it gets better for you though . thanks again for the insightfull blog .

Well, these types of incidents which happen to all of us T1's are why I choose to call it managing, not controlling. We do the best we can! Sometimes circumstances get us unmanaged. I'm weary of the mantra CONTROL! WE all do great to manage the Big D every single day. We're only human! Hope you have a better week! Fight Club. Yep, that's sure what it feels like much of the time.

The Fight Club reference hits diabetes on the head!(no pun intended, but like it) Here's to better days!

I had a few days in Melbourne last week, it was some training for work, and even before I went I was anticipating my blood sugars getting out of control, I know I was getting ahead of myself, but past experience told me that anything I tried to do that was outside normal for me, (read abnormal for anyone else) would lead to high blood sugars.

Its one reason why over the years I seem to have let diabetes take me over, I don’t think that was intentional, but it has gnawed and gnawed away at me, to such an extent I am very hesitant to go out, go for a holiday, anything, as I can expect uncontrolled blood sugars. It can become quite an emotional drain, you really try to do the right thing, test blood sugars, count the carbs take extra boluses but it just gets away from you.

I don’t know how many times I have been frustrated, no upset that my blood sugars do not behave as expected. Last Friday I went out to dinner with work colleagues in Melbourne (I don’t do that often), I had some swordfish with chips and salad (actually that was very nice) a small chocolate moose and sorbet sweet and a coffee, I did my best to count the carbs, but obviously I was wrong again, BG up to 15mmol/L (300mg/dl) by 9 pm. I took a correction bolus, tested again in 45min, again a bit later, still no change. Out with the pump for another bolus, waited an hour or so, retested, a marginal change for the better, mmm what to do? Stay up another hour to see if blood sugars are coming down, yep dropped a few mmol but still high, so alls good then, its trending down? Off to bed, feeling very dehydrated about 4-5am, so get up test and no blood sugars gone back up again, geez are my correction boluses to small?

I tried to figure out what my sensitivities were early last year and I use those figures to calculate a correction, so I am now thinking are those figures “up the creek”, I mean may be my basal rate was to high back then, I wasn’t counting carbs correctly, or are things just different now? They seemed to be about right at the time, though they are hard to work out as there are just too many unknown variables. Because I try to avoid the hypos I reason its better to not over correct, like what happened to you Kerri, but maybe I have under corrected? I can use the same correction amounts on a weekend when I might be clearing up in the garden and I can get a hypo.

In fact I am sure I don’t always estimate carbs correctly, it’s a hard thing to look at anything and estimate the carbs, I try to visualise how much a given portion size weighs and what might be in it and compare it to something I know, so inevitably it’s inaccurate. So I understand why a pumper at the diabetic association here sarcastically said to me before I went on the pump, something along the lines of “a slice of bread” is all you can eat.

My Saturday and Sunday weren’t much better, in fact I didn’t feel to well and most of Sunday hardly had anything to eat, and mostly water, which was helping to rehydrate myself I guess. I was feeling a bit down about it all and that just seemed to reinforce to me its no good trying to go out, eat anything a “normal” person might eat, it just “doesn’t work”. So what to do, perhaps I should stick to “rabbit food”, loose some more wait (that’s another story) and stay at home…I don’t know.

I do know it can be very difficult and depressing sometimes managing diabetes, it’s with you all the time, you try your best but sometimes that isn’t good enough. Its very easy for a diabetic educator to say “so what if you blood sugar gets a bit high when you go out”, but they don’t have to experience the physical and emotional consequences of the following few days. Or maybe they are in part correct? It’s just too much to be tethered to a strict routine 24/7.

Kerri thanks for being authentic and expressing it in your blog. The more everyone can speak openly about not having perfect BG numbers and being annoyed sometimes at CGM alarms or other aspects, the more we can persevere and keep at it.

I have had diabetes 48 years. I am 56. I was ecstatic to find your blog. After reading the blog and the comments I don't feel so alone. Thanks so much Kerri!!God Bless!

*sigh* I love french toast with sugar-free syrup, carbs be d*mned.

Friday nights are for the meals I shouldn't have (tonight: memphis style barbecue) and Saturday mornings are for the breakfasts that should never follow (tomorrow morning: cinnamon rolls). The rest of the week is for a diet to make a CDE proud.

But, to be honest, I don't know how I would do the crazy meals without the CGM. I know it's going to beep at me for my choices, but I am learning so much about how to handle those more difficult foods and more lax days by being vigilant with my CGM on my "less diabetic" days. My barbecue tonight never sent me above 99 (pre-meal I was 80), though I did drop to 60 and have to treat the low at 2 hours after. Still, without the CGM, I don't know how I'd have been able to see what the fried okra, hush puppies, buttered rolls, and sweetened BBQ sauce - not to mention the FAT - were doing to me.

Post a comment

(All comments are moderated. Thanks for your patience!)