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.

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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.