HAWMC Day 22 – Dessert Island

HAWMC_Day 22

My chosen prompt from the Wego Health challenge today is to talk about the things I can’t live without – things I need or love the most. 

IslandYou know the game: “Desert Island“? You have to choose things that you would take with you if you were  hypothetically stranded. (It’s not like you pack to be stranded when you head off on a vacation, right?) Some people vary the game with “pick your albums/songs” or “pick your alcoholic beverage”, but I’m going to go with just my little list of necessities…and it’s not a desert island. It’s dessert island. (That’s how I spelled it when I was seven. ) My dessert island is called Crème Brûlée, because we would eat gobs of it every night and never gain any weight.

In no particular order:

Diet Coke (with Splenda) – I’m the person at the restaurant who, when asked by the waitress, “Is Diet Pepsi O.K.?”, smiles sweetly, says: “Nope. Water, then.” After giving birth to a gorgeous girl, my husband heightened my happiness with an ice cold can of this liquid crack. I prefer Diet Coke with Splenda because aspartame tastes gross and does funny things to my head in large quantities. Diet Coke was presented to the public in August of 1982. I was diagnosed in April of 1983. It was my drink of choice from the first days after diagnosis and with the exception of my pregnancy, you can guarantee that there’s a can close by my body. (Yes, I know I should drink more water. Thank you. There’s water in Diet Coke and I get caffeine to boot. Kill two birds with one stone.)

The Kiddo and The Hubby – If I get to choose, then they’re coming with me. You have to ask why? I need snuggles on my dessert island. They are experts. And someone needs to rub lotion onto my back. And fetch soda. And wave palm fronds to keep me cool. Kid or husband? Both. Truly, they are my loves beyond all love. And I wouldn’t go anywhere if they weren’t there. (But perhaps an occasional babysitter would be nice?)

The Eclectic Music Collection That I’ve Hoarded Over the Years – All of it. All my music. David Bowie (skip the 80s, please), The Beatles, Black Flag, The Pixies, Hüsker Dü, Stone Roses, Muse, Queen, The Grateful Dead, Vivaldi’s Gloria in D, The Toadies, The Beastie Boys (moment of silence for MCA), Arcade Fire, Ofra Haza, Camper Van, The Cure, Elvis (both Presley and Costello), CaminaBurana, Foo Fighters, The Killers, and a single Ke$ha song so that I can remind myself there is also bad music you can dance to. I’ve got play lists to pump me up, calm me down, sing with, wail with, and close my eyes to appreciate the beauty that is created by artists of the aural kind. I’m an equal opportunity fan. No gospel (the closest I get is Johnny Cash) and no country (the closest I get is Johnny Cash). But all else. Give me a set of speakers and my collection and I’m happy.

A Five Star Resort – Do you really think I’m roughing it on my desert dessert island? This is my fantasy, people. I want fluffy pillows and high thread counts for my comfy bed. Fresh towels. A cool glass of water infused with cucumber or lemon when I do want to switch out my Diet Coke with Splenda. I love being pampered. Can I live without it? Sure. But I love it. (And I’m supposed to pick what I love.)

My Friends And Family – All of them. They’ve been with me through the bad times. Being stuck on a desert island isn’t being “stuck” if you have everyone you love with you. (And at a five star resort.)

Large Canvases and Unlimited Access to Painting Supplies – I suck at it, but I love to paint. Hell, I love art of all shapes and kinds. It’s a cathartic creative outlet. I’m an acrylics girl who prefers abstract art and mixed media with various mediums and someday, I’ll be able to take it up again when I’ve got time. Seeing as I’ll be on a desert island, I figure I’ll have a few days to scratch that itch.

Pump, CGM, Insulin, Blood Glucose Meter, Blood Glucose Strips, Lancets, Infusion Sets, Sensors, IV Prep, Alcohol Swabs, Glucose Tabs, Juice Boxes, Syringes (just in case), Ketone Strips… – Forget it. I can’t carry all that. So, on my dessert island, I’m not going to have Type 1 diabetes. I’m also going to be tall and limber and late for my Sports Illustrated Swimsuit Edition photo shoot. And twenty-four again. (That was a good year.)

Wanna come with me? Bring an extra bag, because I think my luggage will be full.

 

 

 

HAWMC Day 21 – Hey! I Get To Quote Shakespeare

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan

Wego Health’s prompt for the beginning of the third week gives us that quote, then asks:  True or false? 

GrowIt’s hard to grow a tender shoot in rocky, arid soil. Flowers don’t sprout at the top of high mountains, where the timber line thins out with the air. There’s only ooze at the deepest parts of the oceans’ depths, fertile for marine life but not for vegetation.

Right now, in the Diabetes Online Community (DOC, for short), I am finding that a flower is blooming in adversity. There is an online petition to change the names of “Type 1 diabetes” and “Type 2 diabetes” to “reflect the nature of each disease”. When I first read it, my reaction was much like Lee Ann Thill’s in her blog post. She states:

With all due respect, if anyone thinks a name change is going to mean they’d eventually catch a break and not have to explain, they haven’t really thought this through, or they haven’t had diabetes long enough to appreciate how this history of name changing has played out and affects people over time.

She and I are both juvenile diabetics, IDDM, Type 1 (you know, the one where the pancreas is broken big time and we’d be taking dirt naps without insulin?) and have both answered some inane questions. The petitioners are parents of younger Type 1 kids and I can see why they are frustrated. I am not a parent who has to worry about a soccer coach or a teacher or someone who cares for my T1 child when I am not around and doesn’t understand the difference between the different types of diabetes.

But I will tell you this. If it wasn’t for an American Diabetes Association “public service” advertisement in Time magazine in 1983, I may have been kicking it six feet under. The ad asked if I had any of the symptoms that many of us have come to know so well: increased urination, increased hunger, blurry vision, fatigue, etc. – because all diabetics have these symptoms regardless of “type”. I checked off every single symptom and knew that was what I had (even though I had no idea what was in store for me). The advertisement was not geared to the small population of Type 1 diabetics in the country. In fact, I’m sure they were trying to reach the Type 2s (’cause, you know, how many kids read Time magazine cover to cover?), but it grabbed me in the wide net they cast, and I’m grateful.

I know a lot of Type 2 diabetics. Do I think they have it “easier”? That my type of diabetes somehow matters more because it’s rarer? Nope. They struggle with many of the same issues that we do. They worry about complications and food and misinformation just like me. While the petitioners wrote their missive with pure hearts, they forgot that a lot of Type 2s (and other types of diabetics – MODY, LADA, gestational) have hearts, too. Mine broke when I read Bob Pedersen’s beautiful response to the proposed name changes. 

As the days pass, what has blossomed from this has been an outpouring of real emotion as all diabetics, no matter what flavor, have come together. This is where I get to quote Shakespeare:

What’s in a name? that which we call a rose
By any other name would smell as sweet;

This flower can blossom in the desert. On the top of Everest. At the bottom of the Mariana Trench. Because it transcends the condition that separates us from the rest of the world by….bringing us together.

There is a new petition begun by Scott Strange that I support. It’s not about changing a name of a disease. It’s about respect and support and education for people living with it – and focusing our collective energy on that. And I will nurture that seed for all it’s worth.  You can sign it here. This is what you’d be signing:

 

To have empathy, no matter the type.

To advocate for those with this condition, whatever the type. To pledge to educate about diabetes, regardless of the type.

To correct misinformation and stereotypes that are so common in society and the media.

To recognize the hurt that misinformation and stereotypes cause people everyday. Hurt that is both emotional and physical.

People, who for what ever reason are affected by these stereotypes on a daily basis. People who just happen to live next door, who just happen to come to your family picnics, who happen to be among those you care for. People you’ve never met, people with families and loved ones.

People who happen to have diabetes.

We’re people.

People just like you.

No matter the type.

This is the flower that is the most beautiful of all. And it came out of our own adversity.

(Hey! I quoted Shakespeare on my website. Crossing that off my bucket list…)

HAWMC Day 20 – Burn, Baby, Burn…

HAWMC Day 20

 

Wego Health month challenge continues with a subject near and dear to my heart: burnout. I’m supposed to talk about how it feels, what my “burnout triggers” are, and what I do to get out of that mindset. 

Sisyphus by Franz Stuck
Sisyphus by Franz Stuck

Sisyphus. Poor guy, doomed for eternity, grunting and groaning, rolling that huge boulder up a hill only to reach the top and watch it slip right back down. His one job, his only task, and he can’t ever get it right. Ever.

Do you think he stopped at the bottom sometimes, put his hand on the cursed rock, and say: “Naaahhhh. Not feeling like it today. Maybe I’ll sit hang out here for a while.”?

I am Sisyphus.

 

There have been times in my life when I just sat, looking up at the summit, and said: “Screw it. I’m tired. Every day, blood and shots and mathematical equations and food and judgement and…” I worried so much about getting it wrong that I felt like I could never get it right, so I’d give up.

My burnout triggers? Easy. Being injured. Being sick. A bunch of really bad lows. A bunch of really bad highs. Stress from work. Stress from relationships. Stress over money. Cold weather. Breathing.

I’m telling you that the triggers are always around us. We all have issues. But sometimes it just pigpiles on and I can’t get out of my own way. The cognitive behavioral therapy self-talks start to sound fake and cheesy. The coping mechanisms break down with overuse. I get frustrated. Tired. Depressed. And the fire that is normally lit under me fizzles and sputters and then grows cold.

I stop testing as often. Ignore how I feel. Eat what I want. Indulge. I couch my excuses with smirks and rolls of my eyes, flashing a “YOLO” hand gesture at the concerned people around me. (Or sometimes, another hand gesture altogether.) I get flippant about my health, because I feel like nothing I do ever makes it right. I’d like to kick that gargantuan ball of granite that is my illness off a cliff, not up a hill.

There is never an epiphany. I don’t suddenly see the error of my ways, throw off my mantle of despair and cheerfully whistle my way to the apex. No Greek god smites me for not pushing my rock, either.

It just stops sucking as much. Or hurting less. I’m not sure which, but the realization that ignoring my diabetes won’t make it go away (I’ve tried that route. Trust me. It doesn’t.). Denying it exists doesn’t work. I can be angry at the disease, but not with myself, and taking it out on me is counterproductive. The spark of anger begins to smolder and smoke. I only have one body that needs me to fuel it for a long time to come. And that rock isn’t going anywhere. I don’t have to like it, but I do have a choice.

I choose to push it up again.

Something ignites inside me and the stone is not quite so heavy. The tune may change tomorrow. For now, the hill is still there, but this time, I dance up it, singing “Burn, baby, burn, disco inferno...”* as I go.

 

* Click the link. You get to see a little Saturday Night Fever action…

 

HAWMC Day 19 – Sitting In The Same Chair, Worlds Apart…

This was a very hard post to do today…going through the photos around the time of my diagnosis stirs up a lot of things I’ve stuffed down.

Wego Health asked: Post a vintage photo of yourself with a caption about the image and where you were in terms of your health condition.

It’s a BOGO Day for you. (Buy One, Get One…) I wanted you to see the before and the after… I’m sitting in my chair at the kitchen table with the bay window behind me, but I’m no longer the same.

Twelve
My twelfth birthday, less than nine months before my diagnosis.

Sixteen months after my diagnosis.
Sixteen months after my diagnosis.

Notice the Medic Alert bracelet shackled on my wrist. Yes, I did intentionally use “shackled”. 

HAWMC Day 18 – There Is No Swimsuit Competition In The Miss Ugly Universe Pageant

HAWMC_2012Day 18

Today’s Wego Health prompt: Write about a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go. 

Giggling and silly discussions about not wearing socks are my normal low blood sugar activities. The goofball hormone kicks in, transforming me into a six-year-old Mae West. I get spacy and snarky and am generally a good time. People around me think I’m pretty funny when I’m chomping on a glucose tab or two. You know how people say: “Aww, he’s a happy drunk.”?  I’m a happy hypoglycemic. 

Except when I’m bullet-train-to-hell low. 

Around 45 mg/dl, a switch in my head gets flipped. Adrenalin and cortisol have flooded my system and with every pounding heartbeat, I hear a whoosh of blood and it’s a screeching cacophony. Good time girl is gone and in her place shakes a wild-eyed mumbling zombie. All sense of comfort and safety runs to the hills and without someone who understands that my only focus is “Get. Sugar. In.”, I can become ugly.

Ugly TiaraI won the Miss Ugly Universe pageant on Sunday. (There is no swimsuit competition. Thank goodness.)

In an earlier post, I mentioned that I had a bunch of lows in a short amount of time. My Dexcom graph looked like a mowhawk. (Love those on babies and hot bassists. Hate them on my Dexcom.) I narrowed it down to one reason: delayed gastric emptying.

My gastroparesis saga will be left for another day. I’m not sure why it’s back and I’m angry that it’s happening now, because the kid and I are on vacation with my family and don’t want to spend it feeling nauseous. 

The CGM alerted me two hours into the drive of my first low and I attacked a juice box. Glucose tablets don’t work fast enough when my stomach isn’t working and even juice takes a while to kick in. We stopped for lunch an hour later and it buzzed again while we were waiting in line for a table. “We’re going to eat soon. I’ll get something when we sit down.” Five minutes later, I knew I had made a horrible miscalculation. 

Even though my dad has seen me through thirty years of diabetes, he’s never seen me have a bad low.  My stepmom has (I love this woman for so many reasons; her cool as a cucumber attitude when all hell is breaking loose is one of them.) and when I whispered: “I need juice. Now. Please…”, she understood that this was no fire drill.

The waitress was kind, saying: “Oh, honey. I have diabetes, too. I’ll get you some OJ right away.” I am sweating and trying not to show any fear for my daughter’s sake, but I am now wondering how long before I begin to cry – or worse, pass out. Then my father asks:

“Why are you so low?”

My head swiveled 360 degrees. I pointed my finger at him and raised my voice loud enough for the surrounding tables to hear: “Don’t. You. Start. With. Me!!! I already had juice in the car and it wasn’t enough!!!! And now I’m dropping too fast for the CGM to keep up!!!!” I unclipped my Dexcom from my jeans and whipped it across the table at him. “Here! See for yourself!”

Ever the peacemaker, my stepmom gently pulled me close to her while sliding the Dexcom back towards me and said: “She’s low, honey. Her stomach isn’t digesting. Let her get juice in. We can talk about this later.” He grumbled something under his breath and turned to keep the toddler occupied until her mommy stopped being a raving bitch. 

She then murmured into my ear: “Where is your glucagon?” I bow my head, tell her it’s in the car, and force myself to take huge gulps of the only thing that will help. I want to abdicate the crown that is firmly planted on my head, rip the sash from my chest, and crush the roses beneath my feet. I hate this ugly feeling. 

Two frosty glasses of orange juice sucked through a straw. She and I watched the numbers on my Dexcom waver between 46 and 40 for a while. My meter after the second glass announced that I was 50. Twenty minutes later, I was 100. 

And ashamed.

And embarrassed.

And sorry that my father bore the brunt of my fear and anger. He knows now that in the question round of the Miss Ugly Universe pageant, I totally rock it with my glucose starved brain’s answers. Because as much as I want to, I can’t take them back. 

And I hate that just as much as the disease.