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Food Frustrations.

“What frustrates you most as someone living with diabetes when eating out or attending an event that isn’t necessarily friendly to your dietary needs?  How do you overcome those challenges?”

Diabetes makes food an out-of-the-gate loaded topic.  Food isn’t ever simply nourishment.  When I look at a plate of food, I see it as a math problem with a dozen different variables.  How many carbs are on the plate?  What kind of carbs are they – fast-acting, slow burning, or a combination of both?  What’s my blood sugar at this moment?  What was it an hour ago?  Do I have a sense of whether or not I’m holding steady, rising, or falling?  Have I exercised recently?  Will I exercise soon? 

And, and, … and?

Oh yes indeed.  It’s another food-related column up at Animas, talking about the weird dance between food being what people eat to stay alive and food being OMG I’M LOW EAT THE FRIDGE.

To take a nibble out of the rest of this column, click over to Animas.

[And in case you were unaware, here's a link to my disclosure page.]

Looking Back: Thank Goodness for Whiskey.

This is a post from February 2013 about the “diabetic diet” perceptions from back in the 1940′s, and when I came across it again this morning, I marveled once again at the power of whiskey.  See below for what old school diabetes diets were once in play.

*   *   *

I received an email from Krista, one of my oldest friends in the world (not that she’s old, but she’s one of the people I’ve known the longest), and the attached file made me laugh out loud.  Her email said, “I found this list in an old (as in published in 1924, and stuffed with articles clipped from various magazines from the 30s and 40s) cookbook that I got from a friend when she cleaned out an old relative’s house … anyway, thought you’d appreciate it.”

Oh, I did.


(link to original version, which is way bigger)

This list is an old-school “diabetic diet” list, and the contents read as follows:

Foods Allowed: 
Soups and broths not thickened with flour
Meats, fresh, smoked and cured, except liver, without flour gravy
Eggs in any way without flour
Fish, all kinds except scallops, clams and oysters
Fats, butter, olive oil, etc.
Cheese, all kinds.
Vegetables and salads, asparagus, beet greens, Brussels sprouts, cabbage, cauliflower, lettuce, celery, pumpkin, radishes, spinach, string beans, tomatoes
Sour pickles, ripe olives
Cream, not over 3 oz a day
Desserts, jellies, etc. sweetened with saccharin
Nuts
Tea and coffee sweetened with saccharin and with small amount of cream
Whiskey, brandy, rums up to 3 oz a day
Lemonade sweetened with saccharin

Articles Forbidden:
Sugar and sweets
Pastry, puddings, preserves, cake and ice cream
Bread, biscuit, toast, crackers, griddle cakes
Cereals, except oatmeal in small amounts
Macaroni, carrots, potatoes, parsnips, beans, peas, corn, turnip
Fruit of all kinds
Alcoholic beverages, except as above

It’s not so much that the list of actual foods is ridiculous, but what kills me is the fact that the second half of the list is deemed “FORBIDDEN ARTICLES!”  No wonder people with diabetes can have such a strange and confusing relationship with food.  Even now, food for me is not always simply food, but becomes a combination of medicine, guilt, sustenance, and math.

Thank goodness for whiskey?

Entering the Mancave.

There are issues we talk about openly in the diabetes community – tips on how to wear a pump, resources for good diet and nutrition, exercise goals, frustrations with blood sugar control, research, and on and on.  All of these topics matter because they play a role in diabetes management, and life as a whole.  But some of these topics are easier than others.  It can be easy to say, “I suck at counting carbs and I need help!” but it’s another discussion entirely to give voice to, “I’m dealing with reproductive issues and I need support.”

Those personal issues need discussing as much as the topics like counting carbs.  Complications are delicate.  Fertility is delicate.  Sexual issues are delicate.  Depression is delicate.  These topics are raw and riddled with social stigma, but they need unpacking.  Otherwise, they get heavier, already heavy all their own.

I remember when I first read about a woman who had given birth after decades with type 1 diabetes and it soothed a panic in me that was there for years, that idea that motherhood was beyond my grasp.  It was a moment, a good moment, that helped change the course of how I approached becoming a mother.

But I also remember the first time I found stories from people in their 20s and 30s who were dealing with diabetes-related complications.  This moment was good in a completely different way.  My diagnosis of macular edema in 2013 generated more than just a new medical condition to manage, but stirred up all these feelings of failure, guilt, and blame … a deluge I wasn’t really prepared for.  These emotions aimed to drown me.  I wanted to hide.  I had very dark, very uncomfortable thoughts that took me away, in a sense, from my friends and family.  I needed support, and am grateful that I found it.  Conversations with peers about dealing with complications at a point when I still felt young but realized how many decades of diabetes I’d logged helped me get through the initial diagnosis and kept me on the path of taking care of myself in order to preserve and protect, but also to continue living despite this new diagnosis.

“Me, too!” stories can help do that.  They confirm that you aren’t alone in what you’re dealing with and that there is support and camaraderie available even in the darkest of times.

I wanted to share a new website called The Diabetes Mancave, created by a writer who has decided to remain anonymous but not to remain silent, and his website is hosting discussions about the topics of male infertility, retrograde ejaculation, and erectile dysfunction, among other things.  From the site:

“You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

… In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.”

Discussions and blogs (and Twitter profiles) like his are long overdue.  I’m really sorry you’re dealing with these issues, Diabetes Mancave guy, but I am so, so grateful you are putting them out there.  I hope you find community and support because by putting your story out there, you’re potentially providing a life preserver for someone else.  Thank you for being brave, and encouraging others to be brave, too.

A Matter of Apologies.

“I was low.  I was frustrated because of the low blood sugar.  I’m sorry.”

“It’s okay,” and I can tell she means it by the look in her friendly, brown eyes.

I used to be very terrible at saying, “I’m sorry.”  I would hold on to frustration and anger in a way that was not good for me or anyone around me, making a grudge or the need to feel like I “won” the disagreement take precedence over a relationship.  I’d keep “I’m sorry” under my tongue because I didn’t want to admit that I’d done something that hurt someone’s feelings.  I felt embarrassed to admit my shortcomings.  It felt awkward and bad.

It took a long time for my head to figure out that my heart was better off if I let the sorry fly, but once I came to that realization, I tried to embrace as often as I could.  (I also had to work on the “does this interaction make me better or worse as a person?”  This is still a work in progress.)  Now I’m less terrible at saying, “I’m sorry,” and I feel better for it.

As much as I hate to admit it, my blood sugars are not only influenced by my emotions (stress, anyone?) but they influence my emotions, as well.  The way my numbers make me physically feel can cause me to act like a total crumb.  It’s another reason to be aware of what my blood sugars are, and if I enter the Crumb Zone, apologize for it.

I find myself apologizing to my daughter at times for entirely blood sugar related reasons.  Sometimes I snap because I’m taking yet another bolus to correct yet another high and my body is riddled with sugar and rage, and I will be far less than patient with my little one as a result.  Other times I raise my voice because I’m trying to treat a low blood sugar reaction and she’s at my elbow asking to [insert rogue request from active 5 year old here].  Losing my patience during the course of run-of-the-mill parenting is something I am not proud of, but losing my patience because diabetes is leaning on my parenting style is something I want my kid to understand as best she can, because I don’t want her ever thinking my seemingly random outbursts are tied to her in any way.

It’s a weird balance between feeling like I’m blaming diabetes for my actions and simply explaining my actions.  Am I in the Crumb Zone (or Mayor of Crumb City, if you’re nasty) because of diabetes?  Nope.  Diabetes doesn’t get credit or get blamed.  But sometimes this disease is part of the explanation, and I want my family to have a sense for how, and why, I’m wired a certain way.

There are moments when Birdy assumes my attitude problem is diabetes-rYes, this whole post was an excuse to use the Siah-in-a-banana picture again.elated when it’s not, and I’m forced to fess up.

“Are you in a bad mood because of a low blood sugar?” my daughter asks, pointedly.

“Not at the moment.  Right now, I’m in a bad mood because I just realized I left a banana in the car while I was on my trip last week.  And now I’m afraid to open the door and confront the banana stink.”

“It’s okay,” she says.  And then adds, “Ew.”

 

Untethered, After a Fashion.

Around 8.30 am, I took an injection of Levemir.

At about 9 am, I switched my basal profile to “OTHER” and disconnected my insulin pump.  The OTHER profile has me at 0.025U basal rate per hour (as close to zero as I can get on my pump) but still holds all my other settings.  I kept the pump in my purse and the infusion set attached to my body, with one of those pump caps (there are two that come with every box of Insets) to keep the site closed.

At 9.03 am, I put on a skirt with a loose waistband that had previously been tugged down by the weight of my insulin pump BUT NOT ON THIS DAY.

Throughout the day, my basal needs are served by the Levemir injection, but I reconnect the insulin pump to deliver my boluses (allowing me to take my meal boluses and correction doses with precision and also without piercing my skin another time because the infusion set is still in place).

Around 9 or 10 at night, my Levemir injection is pretty much toast (over the years, I’ve seen that Levemir leaves my system after 12 hours, so I usually split my dose completely on pump vacations), so I reconnect my insulin pump and spend the overnight connected, receiving the basal bump at 5 am that is delivered to combat the dawn phenomenon my body experiences.

And then, depending on what I’m doing the next day, I’ll decide to keep my pump on or off during the day.  The Levemir pen in my toothbrush holder serves as a reminder to take a morning dose, if that’s my jam.

I like having a choice.  Can’t un-choose diabetes, so having a choice as to how I deliver my insulin is a plus.

It sounds complicated, but it works for where I’m at right now, because I am aiming to make good on the whole “fit diabetes into life, not work life around diabetes.”  And as petty and superficial as it may sound, it made me bananas (read: super angry, not yellow and slippery) when I went to get dressed for the sticky, summer heat and didn’t have a good place to shove my pump.  On the waistband pulled my skirt down.  Between the cups of my bra made for weird lumps and also unnecessary warmth.

This kind of frustration is the shit that can send me into a week-long DBM (Diabetes Bad Mood) and I am trying to mitigate as much of that as possible.  So off came the pump.  On came the highly structured plan to untether in the most graceful way possible.

Keeping an eye on my CGM showed when things were working and when things need tweaking, and I felt at peace with my diabetes instead of Rage Against the Islets.  Which, while a solid band name, doesn’t do much for my emotional health.

Pulled Over.

I had just buckled the girls into their car seats and was ready to make the drive home from day camp, and as I turned the car on, I reflexively grabbed my Dexcom receiver to take a peek at my blood sugars before I started driving.

Shit.  68 mg/dL with an arrow straight down and a blood drop signaling a need for calibration.

“Hang on guys,” I said to my daughter and her friend, who were already singing camp songs in the backseat.  “I need to wait a minute before we head out.”  I pricked my finger quickly to check my blood sugar and, sure enough, saw the 63 mg/dL on my meter waving its arms at me.  No worries – I always have a jar of Glucolift in my center console.

Except this time.

Shit.

“Hey girls. Do you guys have anything left in your lunches?”

“Yeah, I have strawberries and a pouch left in my lunch.  Do you want it, Mom?”  Birdy offered.

“Yep.”  I climbed out of the car and went back to the trunk to rummage around through her lunch bag.  Pulling out the snacks, I gobbled them while standing at the back of my car, a mom on a mission to bring her blood sugar up before driving.

We sat in the parking lot for ten minutes or so, and I watched the CGM graph arrow relax and point sideways.  A glucose meter check showed me at 78 mg/dL, so I felt I was on the rise.  We started the ride home.

Except the CGM alarm went off 15 minutes later, only this time it showed double-down arrows and the BELOW 55 mg/dL message on the screen.

“Shit.”

Certain parts of Rhode Island are relatively rural, and sometimes you have to drive for a while before you pass a gas station or a convenience store.  I immediately started calculating when I’d pass the next place to stop.  I also assessed my symptoms (none) and instinctively reached over to disconnect my insulin pump from my hip.  I thought the two little kids in my car.  I thought about where I could pull over.  I worried about what was safer: driving for another minute or pulling over and not having any food in the car.  And I hoped that worrying so intensely would make me feel stressed and hopefully jack my blood sugar up a little more.

But then, just ahead, I saw the familiar orange and brown sign of a Dunkin Donuts coffee shop.

“Yes.”  I put on my blinker and pulled into the drive through lane of the coffee shop.  “Girls, I need to stop here and get an orange juice, okay?”

“DOUGHNUTS!!!!!” they yelled in unison.

“Not this time, guys.  I need to get some juice and wait a few more minutes before we can keep going.”

Minutes later, I was in the parking lot with an empty bottle of orange juice and two patient kids in the backseat of the car who were peppering me with questions about diabetes.

“Why did we have to stop?”

“Because I needed juice to treat a low blood sugar.”

“What’s a low blood sugar,” asked my daughter’s friend.

Birdy piped up.  “It’s when you have diabetes and you have too much insulin or not enough food in your body and you need glucose tabs or juice or doughnuts but not today because these doughnuts have gluten in them.”  (All in one breath.)

“No doughnuts?”

“Sorry, guys.”

“Can we drive soon?”

“Yes.”

“Okay, can we sing until we start driving?”

“Sure.”

We sat in the parking lot while I waited for the orange juice to do its thing, keeping an eye on my CGM graph and an ear on the two little kids in the back of my car who were belting out songs they learned at camp and who trusted me to take good care of myself in order to take good care of them.

Only no doughnuts, because gluten.

 

My IOB and Me.

There’s a lot of data that PWD (people with diabetes) spin through on a daily basis – carbs counts, insulin units, blood sugar results, blah, blah, blaaaaaaah there’s so much shit sometimes.  I’ve been encouraged by my endocrinologist to download my data and review it every week or two in order to assess trends over time, but I don’t do that as often as I should.  I’m more of a monthly downloader, and I definitely download every night-before-the-endo-appointment, but a systematic review of my diabetes data is one of those things I could do more consistently.

However, the data is crucial to my health success.  I just tend to lean more heavily on the daily data than the month-long reviews.

Like my beloved IOB.  IOB stands for “insulin on board” and it’s a tool in my insulin pump that calculates how much insulin from my most recent boluses is still “active” in my system.  And I don’t know if most pumpers love their IOB data as much as I do, but I LOVE mine.  Love.  Stupid love.  It’s part of the trifecta of diabetes that I rely on every night before bed.

The checklist is short, but always, always the same: every single night before I go to bed, I check my blood sugar on my meter, comparing that number against the CGM graph.  Then I click through on my CGM graph to get feel for how the day has mapped.  And then I click through on my pump to check my beloved IOB to see how much insulin might be in play.  (Okay, honestly I check on my daughter in her bed first.  She’s usually asleep with her hair tousled into a huge mess against her pillow, with Loopy curled up against her legs.  But then I do all the diabetes garbage.)

Checking the IOB in conjunction with the CGM graph and my glucose number gives me a fighting chance against middle-of-the-night hypoglycemia.  And in the last year or so, it’s been a check that’s worked really well.  Several times (last night, for instance), I will look at my data sources and determine that a low might be teased out overnight, and I can pop a glucose tab or run a temporary basal rate on my pump for an hour or two to keep me in range.

My overnight lows are way less frequent than they ever have been before, and that means I clean juice and sweat from my sheets way less often, so there is a practical bonus aside from the whole “not going wicked low while sleeping” thing.

There’s the takeaway:  IOB monitoring helps cut back on laundry.  Use all the money you save on detergent to buy a bionic pancreas!

 

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