top of page

SALTY STORIES

READ MY BOOKS

ISLANDS COVER 2022 Front only for online.png
  • Writer: Erin Spineto
    Erin Spineto
  • 6 min read

As any good scientist knows, if you want to find out what effect any one part of your experiment has on the outcome, you change only one thing at a time. Diabetes is much like an experiment that I conduct on an on-going basis. Recently it has all gone haywire and after months of not being able to catch up with it, I went a little ape-shit. I decided to change nearly all of it and hope it comes out alright. Some of the changes came at my own hands and some were dealt to me.

A month ago everything was stable: relatively consistent diet, workouts getting progressively but slowly longer and higher quality, and everything else in life just humming along. And then I got sick. Sickness, I think, is the ultimate diabetes enemy.

It makes it so you can't workout, which will change insulin needs. It makes it so you sit on a couch and sleep all day, which will change insulin levels. And then your appetite gets all funky and you get hungry at weird times and nauseous at others, which of course changes insulin needs.

So, after being knocked out for a week, I slowly rebounded and began training again. And then I got hit by another cold and was back on my butt. As soon as that was over I was gearing up for my son's surgery- 3 days in a hospital room with a crying child who just wanted to go home and not be in pain-10 days with not more than 20 minutes of sleep at a time and the other 23 hours of the day constantly tending to his needs. The needs of a four-year-old with two casts up to his groin are abundant and frequent. So my overall stress level changed in an instant. Which, of course, would make it the perfect time for my doctor to change the dosing of my anti-thyroid meds. More insulin change.

Now with all this change, one might think I would naturally shy away from more self-inflicted change, but, alas, I am not that smart. I decided to do a complete overhaul on my diet to try to discover what has been going on with my blood sugars and to finally get a leg up in the two-year battle with the pounds my funky thyroid has strapped to my ass.

And, of course, there was the addiction to way too many diet sodas a day to mention. I don't know how I got so addicted to a food that isn't actually a food, but a product made in a lab somewhere. I figured I would need to go cold turkey on that stuff for a while until I got a handle on my blood sugars.

So Monday morning the changes started. Monday was rough. Tuesday was worse. By Wednesday the headaches were throbbing. Thursday the blood sugar patterns were still undiscoverable.

On Friday I decided to cruise through a website that had invited me to blog for them called asweetlife.org. And I stumbled across something that I learned in that hospital Diabetes 101 class, but had failed to recognize in my wild sugars. I had been fighting frequent, random lows for almost 2 months and then huge swings up to the 300's after. It wouldn't matter how little sugar I gave myself to correct for a low, it always jumped right to 300 after. I read a blog on the 'dead in bed' syndrome , which I have to say is a far too cutesy name for such a horrific, life-shattering event.

I have always done well with my nighttime blood sugars, which is nice because if you can consistently have good nightly blood sugars you have conquered one-third of your daily routine without having any brownie cravings, or extra time on the bike trainer or a movie marathon on the couch messing you up. It's fixed and it's easy.

Well, in the last two months, overnight has been anything but easy. I either wake up low and rush downstairs to get some sugar and then, usually, a few hundred calories to follow up, or I wake up high. There was no in between. I was afraid to turn up my basal rate for fear of getting too low and dying in my sleep, but I couldn't turn them down because then my highs would be higher.

My nighttime basals have varied between 0.45 and 0.5 for the last 13 years that I have been on the pump. It is one of the few basals that hasn't really changed at all over the years. In comparison some of my other basals have changed from 0.8 to 1.6 over time, so the nighttime consistency is nice.

That is when I was reminded of the Somogyi affect and realized I might not be going about this the right way. The Somogyi affect is this weird thing that I always struggled with when I was on shots because my nighttime insulin needs are so much lower than my daytime needs. I would take a shot, but it would be too much and drive down my sugars. I would be low and asleep and not wake up from it. My body would get pissed off after a while at being so low and pump out a series of hormones to counteract it and let my liver release some stored sugar to counteract the low.

I would then wake up high and think I needed more overnight insulin, thus worsening the cycle. The insulin pump fixed the problem back then, but now my inability to listen to my body was forcing the same affect. Even though I figured this out, I was still pretty stubborn about it and didn't want to lower my basals for fear that I might be making myself go even higher.

But hearing a phrase like 'dead in bed' for the first time shakes off the stubborn attitude real fast and finding the research they are doing on what causes 'dead in bed' was even more alarming. There are studies out there that say that overnight low blood sugar can alter the way your hearts electrical system works and although more research is needed in this area, the thought of messing with my hearts beating was enough to scare the living daylights out of me.

After reading the second study, I promptly took my hand off the mouse, lowered it to my belt and grabbed my pump. Those basals never saw what was coming to them. Low, lower, the lowest they have ever been. Later, after sitting on the edge of my bed convincing myself not to be afraid, that I would probably wake up tomorrow like I have done for decades already, and very appreciative that I get to sleep next to my husband who would probably notice if I began to convulse with a low blood sugar and be able to rescue me, I laid down to sleep.

And God smiled down on me with the first night in three weeks without a low. I woke up at 6 refreshed and alert and not feeling like crap like I had for weeks before. When I laid down to sleep the night before I was 125. My glucose moniter registered at 155 that morning.

After this great night of sleep, I realized a few things. When I sleep through my lows, or even if I wake up (typically it's after being low for an hour or more) my body is more resistant to insulin for at least 12 hours after. Which makes the whole day a battle against my body.

On top of that, I wake up feeling hung-over and hazy and grumpy and unfocused, which is not a good combination for dealing with a classroom full of fidgety, talkative, well-meaning 6th graders for 7 hours at a clip.

So with my new basals in hand I guess changing up everything all at once wasn't such a crime. Although I think I could have come to the same conclusion if I had only cruised around on the internet a little earlier and not been so afraid to try something new. Now let's see if a happier, more well-balanced body will let go of the extra padding it has developed in some sort of hibernation preparation.

  • Writer: Erin Spineto
    Erin Spineto
  • 5 min read

252 - Last blood sugar reading 684 - Highest blood sugar on record- although it may be a bit inaccurate since the new meters don't go higher than 599 28 - Lowest blood sugar on record- They say you're supposed to pass out at 30 102 - Favorite blood sugar- high enough not to worry about lows and not the "perfect 100" that everyone else strives for 15 - Pounds dropped at diagnosis 19 - pounds gained after starting insulin 8.3 - Last A1C blood test 5-6.9 - "good" A1C range 7.0 A1C I want 5.5- A1C that I would "shit bricks" over 9+ - A1C that makes me cry 36 - Number of A1C test results I have had to endure 8 - Mini boxes of candy I had last night on Halloween 10 - how much I hate Halloween on a scale of 1 to 10 because of the constant temptation of packages of candy just small enough not to register on the "to avoid" list

gu.JPG

1,460 - Number of shots I took before giving up the shots and getting an insulin pump, never to look back 42,340 - Number of times I have sliced a tiny hole in my finger to extract enough blood to give to the machine who will grade my diabetic efforts for the last few hours and give me a result that will either make me smile or make me curse, but either way will better inform me of my enemies tactics and how I can outsmart him. 2,867 - Number of curse words spilled from my mouth in reaction to diabetes 1 - Number of entire boxes of Rice Krispies almost poured over my head in a state of low blood sugar 528 - Number of crying spells brought on by my enemy 2 - Number of E.R. visits due to freakishly high blood sugars 1 - Number of official D.K.A.'s because a box of recalled pump infusion sites got out to me and happened to get used at the same time I was battling the flu (and yes I am pulling out every reason in the world that this one was NOT MY FAULT) 2 - Number of crazy docs who thought they knew more about my body than I did and set me up to do or believe down right stupid things like I would never be able to walk barefoot or that to have 7 different basal rates on a pump is "not necessary" 3- Number of amazing docs who know I live with my body and my enemy daily and who work with me to sharpen my battle plan, who give advice on new research, new tests or new technologies to fight the bastard 14 - years I've had diabetes 12 - years I spent trying to battle diabetes on my own 1,000's friends I feel like I have through Insulindependence.org who help lend support and comfort as we fight together 20ish- the actual number of friends I have made through Insulindependence, though their support makes it feel like more 764 - the Number of times I've said to myself, "Now why didn't I join Insulindependence sooner?" and replied to myself, "Oh, Yes, That's right, they've only been around since 2005!" 864,357- people I wish I could tell to become a part of Insulindependence- It will change the way you attack the enemy 62 - boxes of pump supplies, glucose monitor supplies, sensors, tapes, I.V. Prep, glucose monitor strips and other assorted supplies in my closet/pharmacy 42,120- used blood glucose monitor strips I've sent to the landfill 24 strips currently in various crevices in my car 56 strips currently in my wallet/monitor case 138 strips in the trashcan in the bathroom 2 strips in my running bag 33,476 words written in my slightly humorous (but only to the warped minds of the world) memoir on life with diabetes and sailing solo through the keys 16,534 words to write by November 30 to be a winner in the NaNoWriMo or the National Novel Writing Month 551.13 words per day to write to meet that goal 665 words written so far today, oh wait make that 674. 16 Times I've said since I committed to NaNoWriMo last night, "Oh Crap! How am I ever going to be able to pul this off?" 14 sailing books I own and have read- most of which end in hideous disaster and ruin 3 boats I own, though the largest of the fleet is 15 inches long and attached to a stand so it doesn't tip over on my desk 12 - number of feet of the boat I will build this Spring Break 2- number of children who will help me build it 22- feet of the boat graciously donated for me to use for my trip this February by the Key Lime Sailing Club, my favorite sailing club in the world 4- days I will spend sailing alone int he Florida Keys 100- nautical miles I will cover from Key Largo to Key West 480- GPS waypoints beamed to the satellites and then back to mapmytracks.com where anyone can follow along as I sail 168- messages sent to the social networking sites to update everyone of everything I am doing, seeing, hearing, smelling and eating along the way 7500- dollars that I am trying to raise to benefit the oceanic recreation branch of Insulindependence.org 765- dollars I have already raised (thank you, by the way, to all those amazing people who have helped out in this) 105- days left to raise the additional $6735 64.14 -dollars to raise each and every day until I sail 872- times I have said "Oh Crap! How am I ever going to be able to pul this off?" 4696 miles to fly 63 miles to drive 5 sunsets to watch 3 manatees to talk with 82,354 skeeters to avoid 459 pictures to take 152 minutes of HD video to take so I can edit it down to the 3 minutes I am not looking like a total dork 6840 minutes I will be truly enjoying myself as I seek to take some time away from my everyday life to reflect on what diabetes has done to my life and what the fight against letting it take over has done for my character and my life 40,000 words I will have left to write to finish the memoir expressing those new revelations I am sure to have while spending 6840 minutes alone on a boat in the middle of the sea (well, ok, maybe not the middle of the sea, but far enough away from land that it will feel like the middle of the sea) 17 minutes I have just forced you to read far too many numbers 63 useless numbers that have now been stored somewhere in your brain taking up valuable space that could have been used to remember your telephone number when you move into the retirement home when you are 89 1 person you have now far too many unrelated details about that may come together to form a slightly clearer picture of (sorry Mrs. Fullenwider for ending that one with a preposition)

  • Writer: Erin Spineto
    Erin Spineto
  • 1 min read

I had set out to write tonight, got dressed, got my butt into my writing studio. I realized how often b.s. stands in the way. Right at 7 when I sit to write, my blood sugar dips to 62 and takes with it any capacity to think clearly. so, I sit here, pecking away at the keys with one hand, the other holding up my sagging head, fully aware of the dullness and myriad (yeah, I know it's overused) of typos and punctuation crap. but, whatever, i guess i'll edit later. i have vowed to write weekly, so here is the crap that flows when i am low. now i will lower my sagging head to the cold desk at sit back as i watch my swirling mind slowly be fed more and more sugar and hope that the endless lows choose not to kill the parts of my brain that i need and use, maybe theyll destroy my worry center or my hyper critical part, or maybe the part that loves any sort of goodie late at night. guess we'll find out soon enough. (push "post"" without a second look) -

ABOUT THE AUTHOR

Copy of Untitled Design.png

Erin Spineto is an author, adventurer, and advocate for type 1 diabetes. Read more-->

  • Instagram
  • Facebook
  • X
  • Pinterest

Click below to join the Salties Scoop and get a mini-story delivered to your inbox a few times a month

Click below to join the Salties Scoop and get a mini-story delivered to your inbox a few times a month

SALTIES SCOOP.png
CA PROM FINAL LOW SURF.png

Want to read the Free California Promises Prologue?

CONNECT

  • Facebook
  • Instagram
  • Twitter
  • Pinterest

Disclaimer: This site is not intended to replace, change, or modify anything your doctor tells you. Consult with your doctor before implementing any changes to your diabetes management routine.

© 2020 Sea Peptide Publishing

bottom of page