When Every Conversation Turns to Diabetes

For me and I suspect for many others with DeTickles, there is no switch to turn off thinking about the disease. It’s like background software in the mind, always running and taking up some memory or necessary pathways for other functions and thought processes. My mind is already non-stop whether I want it to be or not, and the constant awareness and management needed for DeTickles just added to that busyness and chaos of thought.

So, it isn’t surprising to me that, especially in the first year of diagnosis when I was on the fastest learning curve and one-way lifestyle change I’ve ever experienced, every conversation made me think of something DeTickles related.

A friend could say, “I am so hungry!” and I will immediately think, Food, yeah that’s a good thing, important. You should eat. If I were to eat a snack like yours, I’d have to count up those chips, check my blood sugar, make sure chips is an okay choice for me right now, then get my insulin, and then I have to make sure I eat all of the food even if I decide I don’t want it.

Or I might hear how cool a concert was and think about if I had gone or if I wanted to go to a different concert how often I would have to check my CGM to make sure my blood sugar was stable because I wouldn’t likely be able to hear any warning alerts.

Or if I were invited to go to the beach later in the week, I’d be thinking about where I want to wear my insulin pump and CGM and which swim suit to wear–do I feel like hiding the pump and monitor and feeling more “normal” or proudly wearing them visibly and being an advocate–and also prepare for questions. I’d think about carrying emergency carbs with me, preventing dehydration (which sends blood sugar numbers up) and sunburn (which can also weaken the body and send sugars up), and trying not to feel like an idiot when I carry a huge, awkward tote of everything I could possibly need (or skipping some of it and taking a risk).

For me, everything comes back to DeTickles management; DeTickles affects everything.

Eventually I noticed how often the word “diabetes” came out of my mouth. I didn’t count, but I was beginning to annoy myself, so I figured maybe it was getting old for others, too. Now, I have a lot of amazing friends who engage and ask honest questions and want to learn about it. That’s great! But for my own sake as well as maybe theirs, I didn’t want absolutely everything I ever talked about to be diabetes this diabetes that, diabetes up the wall and in the bathroom and at the vet’s and on vacation.

There is still a very real element where I do need to talk about it, and often if I have an alarm sound or feel off or whatever, DeTickles will and has to enter the conversation. But I get to choose the other times how much I want it to take over and be the only thing I talk about.

Nah, man. I’m far too interested in a bajillion other things to want that.

Making this blog was in part so I could have a place to regularly pipe up about it without noisly taking it to every restaurant or hangout with friends or shopping trip. And I’m still learning, but I have been a little more proactive in not chiming in with DeTickles fact #1203 or DeTickles complaint #1701, and I’m not sure if anyone else has noticed, but I’m happier for not letting it consume every single time I talk to a friend or family member or share something on social media.

Sometimes I really do even forget I have it. And that’s pretty nice actually.

Yes, I can eat that. Maybe. 

A common joke I’ve heard and even been the butt of once, and one that honestly probably should stop, is “This food is so sweet it’ll give you diabetes.”

Well, I’ve already got that, so bring it over here.

So last week I shared about food, making spinach-apple turkey burgers (do reccommend), and that hey I can still eat potatoes.

Food…is something I greatly enjoy, and very easily hate. It gets so complicated so immediately, it doesn’t really even matter what it is. Sugar free jello cup or a pizza buffet and everything inbetween.

I’ll give you the simplest version of the Type 1 rule of thumb for eating:
I can eat anything you can. I just have to make sure I adjust my insulin accordingly.

That’s is. That’s what many T1Ds fight for the general population who don’t (and we hope won’t have to) deal with constant blood glucose monitoring to understand.
But. Just as everyone should listen to their body and do as best as they can for their individual needs, each person with diabetes (PWD, there’s an acronym some prefer) has to learn what their body does normally and decide how they want to handle their needs. And then there’s also always the chance that how the body responds every single time to x thing won’t be anywhere close to how it responds to exactly the same x thing in all the exact same variarables this time. (Such as my dose for the exact same breakfast the other day: normally barely keeps my numbers from jumping too high but on this day sent me dropping into dangerous territory.) (And it should be noted that some have a harder time with that than other. DeTickles is freakin’ complicated.)

Aaaaand there’s also the whole, Actually sugar can save my life, so hand me that candy and soda right now please thank you.

So, while I will hold fast to the claim that I can still eat anything, there are plenty of times when I have to consider if I should have that slice of cake or half a baked potato or twelve chips instead or five or even if an apple is a good addition to my lunch at the moment…or will eating something extra cause me problems later? I will admit a lot of times I choose to eat the thing I want now anyway, but also a lot of times I refrain, trying to keep longer term health and well-being in mind as more important than happy taste buds or even being a little less full now but not starving so I’m actually okay.

Eating with DeTickles is like walking along a tightrope and sometimes you have that extra balance stick, and sometimes you don’t. My food choice right now is affected by my current blood sugar number, what I’ve already eaten and how long ago, what I plan to do in the next few hours, how I know the food typically affects my body, if it tastes good and is satisfying, if the taste is worth the chance of high blood sugar later and will I be able to counter that, if I have done or plan to do any exercise, if I’m recovering from low blood sugar, and like, just a whole lot of things. Being sick. Or injured. Or stressed. Or calm. Everything, absolutely everything can affect blood sugar, so it’s a lot to keep in mind.

So when someone offers me food, and I really really want it, but my numbers have been over 200 for several hours, and it’s maybe not mealtime, I might have to pass. But that doesn’t mean I wont accept another offer sometime when I’m cruising around 100 and pretty sure I can handle a little treat.

And I will definitely still eat pie.

 

Spinach-Apple Turkey Burgers

So a while back, I signed up for the menu/grocery list subscription service EMeals. I was struggling with meal planning and tired of the same, what, seven or ten things that I kept fixing all the time. I also had no time or desire to sift through (those enticing, delicious-looking, intimidating) cookbooks full of hundreds of ideas and recipes hoping to find something that didn’t take a lot of time or energy to prepare. EMeals was a good solution.

Each week I get a list of seven meals, I choose what I like, and it puts together a shopping list for me on the phone app, sorting the items I need by where they are kept in the grocery store. And, the service has meal plan options that take into consideration special dietary, time, and financial concerns. I signed up for the diabetic plan, which gives me the nutrition information for each main and side dish. I make adjustments as necessary and still do quite a bit of carb counting myself to be sure of what I’m eating, but it helps a lot (and I still get to eat potatoes!).

So let me introduce one of our favorite dishes from this new plan. As I make new posts with favorite meals, I’ll add them to the Food button on the main menu. If you try something I share, I’d love to hear how it goes! Sometimes my attempts and adjustments are…frustratingly amusing. So far, though, we’ve enjoyed them and not gone hungry.

 

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They smell as good as they look.

Spinach-Apple Turkey Burgers

What to do:
Heat some olive oil in a skillet and cook onion, apple, spinach, sage, and garlic salt for about seven minutes. You want the apple to be soft and the liquid to evaporate.

Then I put the cooked ingredients in a bowl and mixed it with the uncooked ground turkey. If you can manage this transition less awkwardly than I can, please do tell me! Forming that into patties was a bit of a literal hot mess, but it basically happened, and that gets cooked over some more hot olive oil about 5-6 minutes each side or until done.

Set up your burger bun with mustard (I used honey mustard, yum), lettuce, tomato, cucumber, and of course your homemade burger patty.

Add some baby carrots on the side and…

NOM!

This is one I want to repeat sometime, when I have a little more enthusiasm for the cooking process. Not really my choice for a worn out kind of evening. But I’m also snail slow at the prep portion of cooking (all that chopping!) and when I have to juggle things in, out, and in again to the same skillet.

 

If you want more precise measurements, see below. (I……was pretty vague with mine and actually I think overdid the apple and turkey proportions because I was tired, cranky, and in very unknown territory. Still, worked out pretty well.)

  • 2 tablespoons olive oil, 1 tablespoon at a time (I just splash whatever looks like enough into the skillet when needed)
  • 1/4 cup diced red onion (I think I misread this one as 1/4 of an onion and eyeballed it, but it worked out. A lot of -sniff- chopping for me, though, -sniffsniff-)
  • 3/4 cup finely chopped apple (I probably cut a whole, huge apple. Good enough!)
  • 1/2 of a 9oz package of baby spinach (I just eyeballed whatever looked good)
  • 1/4 teaspoon dried sage
  • 1/4 teaspoon garlic salt
  • 1/2 pound ground turkey (I definitely used more which is part of why I had five patties–this recipe is supposed to feed two people one meal–and they were larger than would hold together well)
  • 2 teaspoons coarse-grain Dijon mustard (again, I just used honey mustard I had and portioned it as I wanted on my bun)
  • 2 whole-grain hamburger buns (whole-grain comes up a lot with DeTickles)
  • 2 lettuce leaves (I usually like more but it does become a bit of a stretch to chomp down on)
  • 2 thin slices of tomato (or as much as you want, mmmm)
  • 6 cucumber slices (easily slippery but yummy)

The recipe totals the burger carbs at 35g, but since I had extra apple and probably had more than one tablespoon of honey mustard, mine might have come out a bit more than that. The bun alone after all is still going to be around 23-28 grams of carbs depending on what exact one you get, so… If you need to count carbs, best to check your ingredients anyway. Still, for planning purposes, EMeals providing the basic information makes it easier to answer, “What can I eat today?” And these burgers were a two-thumbs up dish.

To tell or not to tell.

A diagnosis of a chronic condition can be a very personal thing, not necessarily something everyone wants to share with others. Maybe not even friends or family, and depending, certainly not coworkers.

After diagnosis, my beau was my first call. Then our parents and the rest of my immediate family (sorry, some of y’all got messages rather than calls). I headed off as many potential questions as I could: no this isn’t necessarily caused by passing down genes so it’s not your fault, no I didn’t give it to myself from eating sugar (that one needs to stop, just so you know, it helps no one, including Type 2 Diabadasses, and perpetuates incomplete misinformation), no it can’t be reversed or cured until they figure out a way to bring my pancreas back to life, basically my body just decided to attack itself an no one really knows the reason why that happens to anyone.

Turned out, though, several of my worries in answering these unspoken questions was unecessary. There wasn’t a lot known in my family on the whats and whys, but they hadn’t thought to take blame or shift it to me, my diet, or anything I had done.

I told my close group of friends a few days later when I could see them all in person. The response was a lot of, Whoa, and my favorite, “…..Wwwwwwwwwwhhhhhat the fuck??”

I laughed, and boy did I need it.

Yes indeed, friend, yes indeed.

But actually, everyone took it quite well.

Then came the question of if, and when, and who to tell at work.

It’s a very personal thing, and some may choose not to share. I sat on it for a month before I told my boss and before I was ready to put it out on my social media where I keep up with long distance friends. But after one month I decided I was ready and for me it was time. I told my boss, explaining this is why I’ve been off and sluggish and now I have help for that. I let my coworkers find out as it came up (though I did try to be discreet when pulling out my insulin–I completely hid in the bathroom the first month, not something I wanted to keep doing), which then actually opened up conversations I wouldn’t have had with them before. And I made a post announcing it on Facebook, to update those who knew something was up and so that I wouldn’t feel the need to keep hiding this very important life change that I wanted to be able to talk about, to raise awareness as helpful, and to open those potential conversations with anyone who wanted.

One month with insulin and my face already looks drastically better than at my birthday.

I had at least two main reasons why I decided to tell people and let them find out in my wider circles.

I didn’t want to hide. I wasn’t exactly feeling shame or embarrassment (okay, there was embarrassment in exposing my belly for an insulin shot), but there was something about slinking to the bathroom every time I needed insulin or to poke my finger to check my blood glucose that seemed so confining. (Plus it is very awkward to juggle all the pieces involved in a bathroom stall with no or next to no shelf-like space, yeesh.) I was awkward, especially at first, but I didn’t want to treat myself like I did have something to be ashamed of, and I did want to be authentic.

Early on I learned that there are a lot of misunderstandings, misconceptions, and just plain wrong information out in the vast world. And if I was going to have this thing, which I clearly had no choice in deciding, I might as well be useful with it and answer questions with accurate information when asked. (Kind of like being tall and helping someone reach something up high; this is my default, so I might as well make it useful somehow.) And who would know to ask me if there wasn’t something visible to cue the conversation?

So I stopped hiding in the bathroom…gradually. I went from under the table shots to taking up the space I needed to be more comfortable. I started eating out again (particularly where nutrition information was readily available: all restaurants of all styles that do that, you are a glowing kindness!). I had the slightly awkward conversations when eating with someone, “Will it bother you if I do this here?” Everyone always said it was perfectly fine. Even those I had barely met. And even those who have an aversion to needles, bless them. (I still try to ask before I bring a needle out, though I no longer use them directly on myself. Needles are not super fun, I get that, belieeeeve me I get that.)

It took some time, and I was actually embarrassed a lot. Not necessarily that I had diabetes–excuse me, DeTickles, ha–but of what was involved with that and how meals especially are instantly and always more complicated because of it. But I knew I didn’t want to hide for the rest, or even much, of my life. I wanted what I’ve been working toward since I was about twenty-five years old: to be free in my own skin, mind, and soul. And DeTickles wasn’t going to stop me from reaching that.

Origin Story

Well, it sounds cooler than “diagnosis story.”

So how does a twenty-eight year old find herself suddenly joining the ranks of diabadasses? (And, hey, isn’t Type 1 supposed to be a kid’s disease? Short answer: no.)

Well, it was not so sudden. Frankly, don’t wait to go to the doctor as long as I did, okay? Okay.

So for Halloween in 2015 I get to go to Walt Disney World with my beau. We have a blast, return home, and boom. Con crud. My headcold quickly becomes a sinus infection. Antibiotics and like an extended out-sick weekend later I finally climb out of bed and try to work full days. I lose a significant amount of weight from being sick, and while that’s frustrating I’m pretty sure I’ll gain it back.

I resume eating regularly and as much as I can, but I never regain the weight. Actually, I keep loosing it.

Fast forward past Thanksgiving, past Christmas, past the New Year. Aside from moving to my own apartment just before Thanksgiving I honestly I don’t remember a lot of the holiday season that year. It’s fun but I’m also a bit drained. I keep losing weight, keep trying to eat more, and keep trying to figure out my deficiency. Vitamins? Veggies? Sunshine? Maybe it’s just stress from moving and setting up my own place?

Now we’re in spring and I’m drinking so much it’s like I can’t make my throat muscles stop swallowing. I’m getting worried. Soda, water, juice, whatever I can get and more of it please. This leads to frequent bathroom stops. Like a lot. And one day I’m driving to work and suddenly realize that my left eye is distinctly blurry even with my glasses. Right eye too, but not as bad.

I see my eye doctor. Whoops, it’s been two years, not one, since my last appointment, so my prescription needs have indeed changed. Okay. New glasses rush ordered before my trip back to visit my parents and brother in my home state and I’m fine.

I also get a blood screening, but it was free and I got what I paid for: a nice hematoma that hurts for a week solid and a long wait for results.

Visit to Oklahoma before my birthday and I still can’t stop drinking. Family and friends notice I’m thin, but I still haven’t realized the visual difference although I’m not happy with the numbers on the scale. It’s a nice trip and a lot of fun but I’m also ready to be back home in my own apartment. Plus I have exciting plans for my twenty-eighth birthday: Rapunzel party!

That was a wonderful day, but looking back at that picture of my face is painful now. (Though sometimes I miss the blue hair.)

Also the strangest thing happens. For a week or two, I don’t need my glasses or my contacts, which I have worn since I was like twelve. My vision improves to the point that I’m safely driving and reveling in how well I can see street signs unaided. In my delight I also think, what the heck, I just bought new glasses, whut!

My birthday gift to myself is the adoption of my first pet, an eleven-year-old tabby whom I lovingly call the Old Man. He immediately has transition stress and health concerns and mine take a backseat while I watch over him.

Meanwhile I’m still not realizing quite how thin I’m becoming but I notice my clothes don’t fit anymore, including undergarments. My legs cramp so bad at night and I think I need potassium but have no bananas or other ideas so I make the worst mistake of my life: never eat a spoonful of straight table salt. Eughhh. I still get a headache every single time I think about that night. The Old Man looks at me like I’m an idiot and he is clearly worried.

Sometimes I look back and wonder just what my thought capacity was in those days.

The blood test results come in and it’s not looking good. My blood glucose is over 300 and my a1C is like 13 or 14. That’s high. That’s way diabetic high. But, I think there’s a possibility it could be a false positive. I hold out hope. Just a little.

Finally I find and choose a doctor and make an appointment for myself. The day before my appointment I feel condemned and confused. There’s no way the blood work is a false positive. I also am just desperate for an answer, any answer with a remedy. It’s an incredible struggle to walk two short blocks in to work every day.

July 6th, 2016 I leave work early hoping for an answer. I don’t even care if it is diabetes. I’ve already been reading up and refreshing my sixth grade knowledge of Type 1 Diabetes from the research paper topic I chose. And I go prepared. I have a whole, long list printed up nice and neat for my doctor explaining my symptoms of the past several months. Turns out they’re all classic symptoms, and not just the thirst and bathroom stops. (Weak grip, slippery fingers, tight skin…)

He listens patiently and openly. Then after a few minutes, he confirms everything with a nod and saying, “You’ve got a little diabetes.”

Honestly I don’t remember how I reacted. Acceptance and shock at the same time. I know I’m going to hate this later, but I want my medicine. God please let me have something to make me feel better.

Then he asks, “Are you squeamish about needles?”

I hesitate with embarrassment, but I have to admit that yes, I am. “A little.”

Does it matter? Yes, but not now.

He talks me through the process and gives me my first dose of artificial insulin on the tiny bit of body fat I have left on my abdomen. Then he writes out a prescription for more and for a glucose monitor.

I am numb when I call my beau from the parking lot.

I know I cried, but I don’t remember when, on the phone or after. Really all I can think is I have to handle this. Think and feel later. Follow the steps now.

I didn’t know it at the time, but I had just become a diabadass.

DeTickle-What?

Okay, so this is a blog about diabetes mellitus, specifically the Type 1 flavor of the disease. So what the heck is DeTickles?

It’s fun.

That’s pretty much it.

There is a lot of misinformation and confusion about the different kinds of diabetes (there are at least six according to the wonderful book, Think Like a Pancreas), and groups of people with Type 1 sometimes wish there was a different name for it so others wouldn’t think we just need more ginger and cinnamon in our lives and we’d be cured. (I’m pretty sure it doesn’t work that way for anybody though, sorry.)

So one day a diabuddy asked, “What would you name it if you could rename Type 1 Diabetes?”

And I said the first thing that popped into my mind. “DeTickles.”

Think about it. C’mon, try it out. Say it with me, DeTickles. It’s a lot harder to stay mad about a thing when you’re calling it “DeTickles.”

I don’t know that it’ll catch on and maybe it shouldn’t be an official medical name or anything, but the humor helps. And ya gotta hold onto that humor.

Besides, it’s more fun.

DeTickles.