This Is My Brain: This Is My Brain On Diabetes - And Sometimes It's Exhausting

Diabetes is so damn different every day and at every turn - it's a goddamn crapshoot!

For example, 3 days ago I filled up a new omnipod with 150 units of insulin (180 unit is normally too much,/as in too wasteful for me,) and placed it on my side boob.

95% of the time, boob sites work really well for me. 

This boob site is working exceptionally well. 

We’re talking almost a solid flatline on my Dexcom for the past 72 hours, except for normal post-meal spikes and 3 actual low blood sugars. 

All of the above had me seriously thinking: Oh my God, did somebody kickstart my pancreas and neglect to tell me?

Anyway, pod expires in two hours, at 6:11 pm tonight. 

I currently have 36 units in my pod. Even if I keep it in for an additional 3 hours (half the 6 hour grace period after the time on your pod officially runs out,) and bolus for my dinner, I’ll still have more than 31 units left. 

Do I really want to start a new pod at almost 10 pm at night and post-meal? 

I DO NOT. 

WHY? Because then I’ll have to stay up and make sure everything is copasetic with my new site/pod. If it isn’t  - I have to start the process all over again. I have to work tomorrow - I don't want to be up super late!

Not to mention the fact that if I change out this pod late night tonight, that means in all probability, I'll have to change out the next pod late at night- unless I can sync my morning alarm with the 6 hour grace period and make sure I have enough insulin in said pod during that grace period. Or I run out of insulin before the pod times out. Or an occlusion alarm goes off. 
Or 390 other different diabetes wrenches getting thrown into the equation.
This isn't projecting, this is what is required for those of us wearing diabetes robotical parts. 
SIGH. 

If I put less insulin in my new pod, there’s a 50% chance that diabetes will switch it’s bitch-switch and I’ll go through my normal 150 units in less than 72 hours and will have to change out my site early - unless of course, that doesn’t happen. 

Again - who the hell knows what will be required from a new infusion site and no matter what brand of robot pancreas you’re using. YES, the same happens with tubed pumps.

Or like... do I put less insulin in the new pod and do correction injections from the remaining insulin in my previous pod? 

For fuck sake, insulin is the 5th most expensive insulin on the planet and I don’t want to waste it!

Yeah, this is only a small portion of the mostly necessary and seriously annoying diabetes minutia that runs through people living with diabetes minds and on a daily basis. 

This is also why when a healthcare professional asks me how much insulin I take a day I look at them with daggers in my eyes. OK, maybe not daggers - especially if they're nice. But I definitely channel my inner 13-year-old self and roll my eyes at them and I'm all like, WHATEVER.

Every day with diabetes is different - and requires a different amount of insulin - and for dozens of different reasons. And there are dozens if not hundreds, maybe thousands, (but for real it feels like MILLIONS,) of different diabetes scenarios having nothing to do with site changes or insulin or carbs.  

AND SOMETIMES IT'S GODDAMN EXHAUSTING. 

This my brain. This is my brain on diabetes.  

This spot-on cartoon was created by the amazing Haidee Merritt.
To see more of her work, laugh your butt off and maybe buy her books,  click HERE. 

Summer's End: #AADE19, #AADEDSMS, DDRC, Never Ending Insurance Issues~

It’s been a long summer and a while since I’ve last posted. 

Here’s what’s going on with me since I last posted. 

#AADE19 #AADEDSMS 

I traveled to Houston in August (super hot, great food,) and covered AADE19 for Ascensia Diabetes Care and Co-Chaired Ascensia’s #AADEDSMS Diabetes Social Media Conference. AADEDSMS discussion topics included diabetes stigma, the importance of talking about complications, diabetes tech, and Health Insurance in the US. 

You’ll recognize many of the names who attended the summit - and those who followed  The Ascensia #AADEDSMS Summit virtually and via the hashtag on twitter. 

My first in a series  of three articles covering AADE is up and running over on Ascensia’s website. 

Click HERE, give a read and many thanks in advance.

Disclosure: Ascensia paid for my expenses and provided me with an honorarium. 

As always, when it comes to my writing, all thoughts are mine and mine alone.

The Rest Of My Summer….

Work, connecting with family, ocean workouts - primarily body surfing. 

 I love body surfing -I love how it makes me feel and I love the positive impact that body surfing has on my blood sugars, heart, shoulders, and lungs.

Speaking of the ocean, it’s hurricane season - Dorian is wreaking havoc in The Bahamas and Abaco Islands, and threatening the east coast. 

As someone who survived Hurricane Sandy - I’m nervous and have my Diabetes emergency bag ready to go at all times. 

If you’re anywhere near Dorian’s path, click HERE and check out The Diabetes Disaster Response Coalition - info found there will help you prepare diabetes wise for any weather related disaster. 

Insurance Issues

I’ve been dealing with insurance issues since April because I live in the US and it’s a never ending and ongoing struggle. 

First my insurance Company switched my insulin coverage in January and they no longer cover Apidra - the insulin that works best for me. I’ve struggled with higher numbers the past few months and I know using an insulin other than Apidra is one of the reasons why.

Still appealing - diabetes bitch-switch is flipped and dialed up to 11. 

This summer I developed peroneal tendonitis and was prescribed a prescription lidocaine cream (after my lidocaine patch RX refill was denied,) and that was covered by my insurance in June. 

When I went to get my RX refilled in July, it was no longer covered - thanks to a third party company that was hired to review all RXs that came their way and via my insurance company. 

Apparently I didn’t fit the criteria to be granted the RX and said third party company continues to deny said RX after multiple appeals. More to follow~

HOLD MY CARROTS

Taste the rainbow and diabetes bitchswitch, flipped.

I don’t know why some people are obsessed with carrots and diabetes - but get a fucking clue, learn the facts about diabetes, and leave carrots alone - and leave me alone when I eat or buy them - because I LOVE CARROTS. 
This happened right before Christmas.

#####

I stood there in the veggie aisle, enthralled by the display of 2 lb bags of large and organic rainbow carrots - guys, they were seriously gorgeous, dare I say stunning?  
A literal rainbow of colors - purple, orange, beige - and I couldn’t wait to embrace the rainbow of carrots, chop them up and get them in my belly!

Bonus, they were only 50 cents more than the freakish large and weirdly uniform looking Frankenstein carrots  - and I knew they were tastier, because no chemicals. 

I’d planned on making an amazing carrot ginger soup I’d recently perfected when I got home, these carrots would be perfect. I grabbed two, 2 lb bags and walked towards the produce scale a few feet away. 

 Side bar: Bagged produce doesn’t always weigh the same, so take a beat and weigh them. 

In this case, one bag weighed a 1/2 a pound more than the other - and that would be the one I placed in my cart with the other ingredients. 

As I turned to put the other bag of carrots back, I heard someone say, “You’ll get diabetes if you eat all those carrots.” 

I looked over towards the apple bins and saw a woman standing in that aisle and with what seemed to be an inordinate amount of kale in her basket, but that's besides the point. 
She stood catty-corner to the isle, looking at me and shaking her head. 

I silently uttered ”fuck,” looked at her and said, “I don’t know anyone who eats two pounds of carrots at once and that’s not how diabetes works." 

Then I did my best to extricate myself from the lecture I knew was headed my way.

It was like the baby carrot bbq incident of 2011 all over again - but different. 

Nine times out of ten, I try and educate about diabetes every chance I get - that's what most of us do. But not this time.

This time - on a rainy and damn near freezing night, all I wanted to do was get home, put on my PJs and create the fabulous carrot ginger soup I’d been craving and which ironically, always seemed to be followed by post meal unicorn blood sugars, every time I made it. 

Which when you think about it makes perfect sense because It’s all veggies - it’s like drinking a liquid warm salad, except that sounds gross and this soup is anything but!

I started wheeling my cart back towards the carrot wall, but Apple Annie followed my over. 

Apple Annie: Carrots are loaded with sugar - they're like donuts. 

Me: Ginger Donut soup doesn’t sound like it would be appetizing. 

Apple Annie: Carrots are loaded with sugar - they do more harm than good and mess with your insulin levels. 

And in my head, I panned left to the imaginary camera and said: HOLD MY CARROTS.

In real time and standing in front of the rainbow of veggies, I stepped on my diabetes soapbox and stated: I already have diabetes - I’ve had diabetes since I was a little girl - and not because my mom fed me carrots... or donuts... or donuts laced with carrots. 

I have diabetes because my pancreas crapped out and destroyed the part of my pancreas that makes insulin - STOP BLAMING PEOPLE WITH DIABETES AND STOP BLAMING CARROTS.

And instead of putting the second bag of rainbow carrots back, I tossed them in my cart in defiance and walked past her.

And Apple Annie just stared at me like I had three-heads, all of which were happily munching away on rainbow carrots. 

Taste the rainbow, and diabetes bitch-switch, flipped and dialed up to 11. 

Treating Both The Mental & The Physical Sides Of Diabetes Is A No-Brainer.

Last night’s DSMA chat was of course about Diabetes.  But this week's chat was all about the mental side of diabetes in all dimensions. As in all the baggage diabetes creates, re: food; food issues, self esteem, blood sugars, the stress of managing blood sugars, judgement and doctors treating the mental side of diabetes and not just the physical, etc. 

It was an amazing chat & BIG THANKS to Cherise for making it happen!  

So amazing that I’m still thinking about it today. 

And as far as me and 99% of last night's DSMA chat are  concerned, HCPs must treat the mental side of diabetes as well as the physical. 

Diabetes is damn hard to live with because simply put: Diabetes is constant and never ending. 

Sure, there are days when diabetes is easier to manage, when it’s not so all encompassing - and those days are great - But even on the good days, diabetes is right by our side - and in our heads.

And there are days when diabetes is incredibly difficult to live with  - And I’d divorce myself from diabetes in a hot second if I could. 

Because on those days, Diabetes makes me cry tears of anger, frustration and isolation.

There are moments though when we mourn our lives pre D - even when we don’t really remember much about our lives before diabetes. 

And there are so many moments when we beat ourselves up for what we did our didn’t do in the past - And the Diabetes Guilt eats us alive. 

Diabetes and depression go hand in hand. 

We are not our numbers, but PWDs are always judged by our numbers. 

Numbers are everywhere when it comes to living with diabetes. 

Our lives with diabetes are measured in numbers - Units of insulin, grams of carbohydrates, blood sugars, labs and A1Cs. People with diabetes see numbers on their plates instead of food. 

And every number has a story. 

And people who don’t live with diabetes don’t know or want to know those stories - or know that those stories even existed.  They just want us to be good and have good numbers, period.

But diabetes... and living with diabetes isn’t black and white, because diabetes is never the same disease two days in a row. 

And diabetes can flip it’s bitchswitch faster than the 5 seconds it takes for your blood sugar to flash up on the screen. 

Diabetes is hard work.  

And our diabetes is not our fault  - Even though the majority of the world thinks it is. 

Sidebar: Thank you media for not doing your jobs.

So it’s paramount that healthcare professionals teach people living with diabetes coping mechanisms about handling our lives with diabetes. 

I’s critical that our healthcare professionals talk with us, not at us - And that they encourage us to talk..... Or talk with someone. 

Because it's OK to talk to someone when diabetes gets overwhelming - It really is and I do.  

Diabetes support both on-line and off should be mandatory, not a luxury. Nor should patient peer support online in the form of blogs, twitter, online communities, facebook be considered a fad - because it’s not. It’s helping tremendously and it’s here to stay. THANK GOD.

Having Diabetes is not just about having a broken pancreas or a screwed up metabolism. 

And the endocrine system affects pretty much everything in our bodies - So why wouldn’t it effect our emotional well being?? 

So yep, treating both the mental and the physical side of diabetes is a no-brainer in my book. 

Diabetes Interrogation tactics Will Not Be Tolerated - And Will Lead To You Being Asked Some Very Personal Questions

This post was inspired by many things, including being denied a cupcake recently..... just because I had type 1 diabetes.

######

How much do you weigh.....  Come on seriously, how much do you weigh? Really? You look MUCH HEAVIER.  Interesting. 

When's the last time you had sex & what's your favorite position?  Also, why are you looking at me like I have 3 heads for asking that question?? And for the record, I don't care if we've just met - TELL ME.
  

I think all of us can agree that the above questions are pretty damn personal (not to mention inappropriate,) and  none (OK, most) of us would never consider asking them to an acquaintance or coworker, let alone a complete stranger. 

And many of us wouldn't even ask our close friends those questions, because quite frankly: 

1. It's none of our business

2. It's none of our business.

So why is it OK for people, other than our HealthCare Professionals (and even then I prefer it to be my diabetes HCP, who understand the #everynumberhasastory, concept) to ask us what our a1c is & why? 

Who said it was OK for the person sitting across from us either in real life or on the net to ask: What's your blood sugar? WHY SO HIGH AND WHAT THE HELL DID YOU EAT!!  WHY SO LOW.... WHAT THE HELL DID YOU DO?!!

How come people (and sometimes people we've just met,) have absolutely no problem telling people with diabetes what they can and cannot eat/do in a room full of people or one-on-one and regardless of the diabetes type? 

And since when is it OK to say: But you take care of yourself..... right??? You don't have any diabetes complications.... right? Only people who don't do what they're supposed to get diabetes complications.
NEWS FLASH: it's not OK to ask a PWD (person with diabetes) about D complications and assume/ blame the PWD. 

It's not OK. It's not OK to assume or judge or tell me I can't have a cupcake because of my busted pancreas,

Just like It's not OK judge a person on their current and or past blood sugar.

It's bullshit in all dimensions is what it is. 

Some things are private in life, and some things are private in life with diabetes. 

If and when people with diabetes choose to share, it should be the person(s) with diabetes choice. 

And when people with diabetes in the Diabetes Online Community (and offline) share, we share for many reasons. 

We share to get support. We share to give support. We share because we are proud. We share because we are struggling.  We share to educate and we share to be educated. We share to show others that they are not alone in their life.... or their life with diabetes.

Bottom Line: D Interrogation tactics are not appreciated, nor will they be tolerated -And will lead to you being some very personal questions~ 

However, asking the person with diabetes how they are doing because you really care, or asking how you can learn more about living with diabetes in all it's shapes and forms is greatly appreciated - And will let to some very interesting, honest and from the heart discussions. #fact 

How Do You Ride Out Diabetes BitchFits Without Completely Flipping Your Diabetes Bitchswitch?

I worked out yesterday morning before work and had the numbers to prove it...... Until I changed my infusion site and put in in late afternoon when my numbers got higher than I liked. But my numbers were still craptastic, hovering in the 220s. And even after taking another 2 mile walk after work, I was still was... You guessed it, 220. 

Cut to this morning when I woke up at 225 and changed my infusion site yet again, followed by a fresh reservoir -  I was down to 8 units after all.  

And even after all of the above, my numbers remain wonky - Even after a 2 mile walk at lunch, I was 190 - though I felt lower. 

So has my insulin gone skunky? And if it has, that would totally suck because I just cracked opened a new bottle last week - And that has me worried about the other bottles of pancreas juice n my fridge. 

Maybe it’s me. Maybe it’s the remnants of pharengitis, but if that was the case, I’d have crap numbers for days instead of just 24 hrs. 

Or maybe diabetes is acting like a first class bitch because it can. 

I can’t get upset, because that will lead to more crappy numbers - And diabetes would have the upper hand - EFF THAT.

No, I have ride out the diabetes bitchiness and go with the diabetes flow, which isn’t always easy, but is required none the less. 

Maybe I’ll  increase my insulin pump’s temporary basal rate by a few tenths of a unit after my 3 pm blood sugar check - And then again, maybe I won’t. 

So my question to you is: How do you ride out diabetes bitch fits without completely flipping your diabetes bitch switch? 
Sidebar: SAY THAT THREE TIMES FAST.

And for the record - I’m a huge fan of my Diabetes Bitchswitch - yours, too.

But with that being said, I don't want inflict my Diabetes Bitchswitch wrath on myself!  

NEWS FLASH: Transitioning To Adulthood Is A Bitch

On Monday  night I received a PR release in my inbox  about a UCLA Study and honestly, I didn’t know whether to throw something against the wall in anger or laugh out loud or do both. 

The UCLA Study is all about children with type 1 having a tough time making the transition from their peds endos to an adult endo. 

They followed children for years and noticed this SHOCKER: Young adults with diabetes have a really rough time transitioning from their peds endo to an adult endocrinologist.

YA THINK? 

When I posted the link on Facebook other former children with diabetes chimed in and agreed that this information was: 

A. Nothing new

B. Infuriating and comical at the same time

C. Bullshit 

Had those conducting the study taken a little time to  listen former children with diabetes who are now adults living with diabetes wax poetic about problems transitioning  to adult Endos? Because they would have realized that this is NOT a new problem - It's almost a damn near standard problem across the diabetes board that needs to be fixed - Immediately! 

Transitioning from a child to an adult is a bitch without a chronic illness, but add diabetes to the mix and it’s whole other shit storm to deal with. 

I didn’t want to jump the gun, so I put a call out on Facebook about former cwds switching to adult endos and the response was GREAT (So much so that THIS awesome blog post from Melissa at SweetlyVoiced came out of it,) and my post with DOC responses will be up soon. 

Also, I picked up the phone on Tuesday and called UCLA & I emailed Dr. Lotstein (the Dr. doing the study) a detailed email that afternoon and asked her the following questions: 

1. Transitioning from Peds to adult Endo's has been a huge issue for patients with diabetes for decades, when did Dr. Lotstein first notice the issue?  

2. Has Dr. Lotstein talked with former children with diabetes who are well into adulthood and living with diabetes regarding transitioning? 

3. Will the second phase of the study be as long the first, what types of support systems will be studied & is the Diabetes On-line Community being considered as part of the support system? 

4. How many phases are in the study? 

5. How much money is being/will be spent on the study? 

6. How do you plan to incorporate what you've learned in the study into a real life and when?? 

For the record, I have yet to receive an answer from her. 

And for the life of me I don't understand why YEARS are being spent studying this phenomenon when there are literally thousands and thousands of adult examples of this very thing. 

Why not take the money that’s being spent on a multi-phased study and develop real time solutions in the form of patient support groups, family psychologists and HCP liaisons to help with the young adults who are no longer children with diabetes, but who are young adults who need to transition to an adult Endo. 

The waste of the study participants valuable mental and physical health is all I can think about! 

Why am I so passionate about this?  Because I know what happened to me.

I went to Children’s Hospital in Philadelphia (CHOP) every three months like clockwork from the time I was diagnosed at age 8,  until I was almost 20 - When they finally kicked me out. 

I remember crying and begging them to let me stay. 

Diabetes was hard, and my Peds Endo & company were like family - They were all I’d known in my life with diabetes. 

And even when I wasn’t the perfect child with diabetes - they still loved me - And they cared enough to let me know when I needed to do better. 

And at the time of my switch I wasn’t doing great with my diabetes. 

I think my a1c was somewhere around 13 - MAYBE. 
It was the Diabetes Dark Ages, my family shared one meter that took 2 minutes and at least half a liter of blood at each sitting. 
There were only two kinds of insulin on the market and the rules of diabetes were entirely different. 
And I was struggling with so much change in my life,  not to mention I was suffering from a major case of Diabetes Burnout. 

I’d lived with diabetes for almost twelve years at that point - I just wanted to be a normal college kid. 

Turns out my new adult Endo was at the University of Pennsylvania, and he was a big name in the diabetes world. He’d written books, done lectures, and he considered himself a diabetes god. 

Dr. Big Name wouldn’t let my parents come in to the appointment with me - I was an adult and parents were not allowed. 

And I thought that maybe I could handle it - but I was scared. 

When the big day came my father dropped me off and told me he’d pick me up in few hours at the campus bookstore. 

And I remember sitting at Dr. Big Name’s big desk while he looked at my labs for what seemed like forever.  

And I remember starting to cry when Dr. Big Name told me I wasn’t a good diabetic. 

With numbers like these you’ll follow in your sister’s footsteps  - DO YOU WANT THAT? he said sternly.

Me: NO. I’m trying.

Dr. Big Name:  Well you’re not trying hard enough - You’re not disciplined enough. 

You know what diabetes can do, you do know that it’s s killing your sister, don’t you?  

Do you want it to kill you, too?

Do want to do that to your parents? Do you want them to suffer even more? 

And at that point I don’t remember what I said, but I knew I was never coming back to his office, no matter how many books on diabetes he wrote.

I left that office with tears streaming down my face and I remember feeling so incredibly alone, afraid and defeated. 
I felt like I would never own my diabetes so why even try? 

If diabetes was going to kill Debbie, then there was a good chance it would kill me too. 

It took me a good hour to pull myself together and calm down. 

When my dad picked me up an hour and fifteen minutes later, I told him that I was NEVER going back there. 

And I never told my father what Dr. BigName said about my sister or me dying - I knew it would hurt him and I knew he’d get angry and I didn’t want to be the cause of any more diabetes pain for my parents. 

So I just told my dad that Dr. Big Name was an asshole. 

But I thought about What ‘Dr. Big Name the Asshole” said to me for years and years and and well into my adulthood.

And up until I finished college and moved away, I went to my father’s Endo in my small hometown. 

She was a good Endo & tough, and her waiting room was always filled. 

She didn’t make me cry, but I knew I was challenging patient. I was young, most of her patients were not. 

and I didn’t want to be there.  

I was angry about a lot of things back then, including my diabetes.

I was angry that my sister was dying from a disease we both shared, angry and afraid that history might repeat itself, angry about everything. 

It was tough to be an adult, especially a college aged adult with diabetes who tried her best to be “normal.” 

When my sister died, I remember going in for my D checkup and everyone in the office looked at me with pity - And I wanted to be anywhere but there. 

I still had more than my share of shitty numbers in college, but at least I was going to see an Endo.  
And when I finally moved to Philadelphia after I graduation, I found a great Endo - An Endo who talked with me, not at me. 

An Endo who knew I was scared and trying hard - and even gave me his home phone number if I ran into trouble with my insulin sliding scale. And because of that long ago Endo, I finally learned to own my diabetes instead of having my diabetes own me. 
And that Endo introduced to the amazing Dr. J - And because of both of those amazing Endocrinologists my world changed for the better.

But in my heart I know that there was damage done, both mentally and physically in those years of struggle. 

Seriously, how could there not? 

And I wish I’d known that there was a huge number of us who grew up with diabetes that had a really tough time becoming an adult with diabetes - both in the adult Endo’s office & out of it. 

I wish I'd known that it wasn’t all my fault that the transition had been so incredibly difficult.
I wish I'd know that I wasn't bad or terrible - I was just a 19 year old who was trying to be a grown up and figure it all out.... A 19 year old who was trying to find her place in the world. 

And that’s why I wanted to throw my laptop against the wall when I read about the UCLA study. 

Why waste money to prove what we already know to be? 

Instead of spending the money on the next phase of the study, which (and I'm quoting here,) "is to directly follow young adults transitioning to adult care to see what happens as they age and to examine how different types of support aimed at easing the transition affect health outcomes." 

Why not spend the money on hiring people to help with transition from pediatric endocrinology to adult endocrinologists? 

Why not create markers that can be put in place in real time and across the country to help people? 

Why not be the change that we all want instead of spending money to eventually put the changes in place - But lose another diabetes generation in the process?  

You don’t have to be a Rocket Scientist to see the problem, you don’t even have to be an Endo - But you do have to listen and fix the problem- ASAP, because peoples lives and future good health depend on it. 

You Are What You Eat - So Today I Am 2 Cups Of Starbucks Medium Roast...

There was a facebook discussion where I brought up well meaning people who didn’t even know telling me that I just did this, or didn’t eat that, I wouldn’t need insulin. 

And for some reason the term: You are what you eat, has been looping in my mind ever since. So I went with it - And this what I came up with.

#####

They say (and by THEY, I mean a multitude of dudes  and in a multitude of different variations) that you are what you eat.  

Which means today I am 2 cups of Starbucks Medium Roast, a greek blueberry yogurt, a heaping spoonful of peanut butter dripping with honey, followed by a lunch of gluten free garlic crackers and cream cheese, a raw yellow pepper and a tangelo. 

Last night I was a large rainbow colored salad with hardboiled eggs and croutons, lightly doused with Paul Newman Olive Oil dressing. Immediately followed by a tangelo and two Trader Joe’s Old Fashioned oatmeal cookies with vanilla Silk soy milk lightly sprinkled with cinnamon. 

SIDEBAR: The cinnamon was not sprinkled in the vanilla Silk soy to lower my blood sugar. It was sprinkled in my vanilla Silk soy because it’s damn tasty!

And earlier yesterday I was two Reese’s Peanut Butter Cup Hearts - 36 grams of deliciousness and worth every drop of insulin I used to cover them! 

Speaking of insulin, no matter what I am or what eat for that matter, I am ALWAYS going to need to bolus insulin to cover my meals and take correction boluses to correct my blood sugars  for the rest of my life - That is my reality, not my choice. 

 And if you’re reading this,  there’s a good chance it’s your reality (or someone you love’s reality,) too.

Why am I writing this? Because sometimes I (we) have to remind people that no matter what we eat as people with type1 diabetes or how many miles we run, walk, or ride or bikes,  -we will always need insulin in order to live.

And while the amounts of said insulin may change depending on the blood sugar; the meal, the amount of exercise before said meal, whether or not we are fighting off an infection, going through a growth spirit, or dealing with hormones - Ladies I’m talking about  PMSing,  have our periods, etc.  The fact that people with type 1 (and some with type 1.5 and type 2) are going to need insulin. 

Insulin not a demon, on the contrary, insulin = life and we shouldn’t ever have to make excuses for taking it - or feel guilty because we need more or less insulin at certain times. 

 But sometimes we do feel guilty, so THANK YOU SOCIETY.

Insulin is what allows us to walk around and live - So  those in society who think differently can SUCK IT. 

You Want To Know What's Exhausting? Living With Diabetes & Diabetes Media Muck - Ups!

So the wonderful Melissa Baland Lee from Sweetly Voiced posted a link to a Chicago news report on facebook this weekend, about a 7 year old daughter saved her mom with diabetes - And the less then pleasant exchange she and other DOCers had with the reporter on twitter. Melissa originally found out about the story from the fabulous Christina Ghosn from Stick With It Sugar, And damn if it didn't create quite a discussion!!!

Did I mention that these ladies, ROCK? 

The mom in the story (Jennifer Sheridan) a type 1, went into insulin shock while driving - A nightmare come to life for all of us living with diabetes.  And her young daughter Alexsandra  reached for the keys in the ignition and turned of the car before it hit a tree. 

And that’s awesome - Alexsandra is a total SHERO in all dimensions and she absolutely should be celebrated!

SIDEBAR: HERE'S the link to the story with the proper diabetes corrections. 

I LOVE seeing positive and accurate stories about diabetes  - and people with diabetes in the news -Movies, too.

Though I’ve never seen a movie that’s accurately nailed diabetes yet, but I digress.  

But unfortunately in this particular story, the reporter included some deadly and false info re: diabetes that made it to air. 

 Most notably the reporter Diane Pathieu, originally stated (the piece has since been edited) that the woman was in insulin shock  and “was in need of insulin.”  That story was tweeted and facebooked and put on the station’s website. 

FYI: i know I don't have to tell anyone living with type 1 diabetes this, but with that being said: 
NEVER GIVE SOMEONE INSULIN WHEN THEY ARE EXPERIENCING INSULIN SHOCK, A.K.A., LOW BLOOD SUGAR. IT'S DEADLY.

And it's a mistake that so many people make - Including people I know and love - And we've all had correct well meaning friends on coworkers about low blood sugars and insulin because our lives depend on the right information getting out there in the event that we are unable to give that information ourselves. 

The Reporter in question utilizes Social Media to promote her stories to the masses and connect and engage with her audience,  and develop a following in the community she represents.  And while I don’t know it for a fact, I’m sure she hopes that her stories will be picked up by other media outlets -  

And I totally get that. 

We all use Social Media for those reasons need to be prepared for the accolades and the criticisms, both constructive and otherwise. 

Social Media is just that - It’s social  - It’s engaging in a conversation, developing relationships and allows our voices to be heard..... and our stories to be told. 

And when a television reporter, whose reach is immediate and who’s words are taken as fact by her viewing public,  makes a mistake, she or he needs to correct them - And own up to them - Especially when those mistakes can be deadly.

 Instead of engaging in a conversation with the Diabetes On-line community via  twitter, Diane told those who tried to give her constructive criticism that that they were wrong, and that “we should agree to disagree.” She threatened to block anyone who disagreed with her and she did - Including me. 

At one point she tweeted that ‘the conversation was exhausting’. 

And while she didn’t tweet that statement to me - I twitterrupted and let her know that living with diabetes was exhausting - As was dealing with diabetes media mistakes. And like I said, she blocked me - And without so much as a responding tweet.  

Her line about “ the conversation being exhausting” just wouldn’t leave my head - Because quite frankly, Girlfriend had no clue as to what “exhausting”  really is.

Exhausting is living with a chronic illness 24X7, 365 days a year, for 35 years. 

Exhausting is testing your blood sugars between 7 and 12 times a day, every day - no matter what. 

Exhausting is calculating the carbs and insulin to cover said carbs, for every piece of food or drink that you put in your mouth. Same goes for injecting and calculating insulin to lower a high blood sugar.

Exhausting is being a parent who gets up two or three times a night to check child’s (or children's’) blood sugars every, single nigh. 

Exhausting is being spouse or significant other of a  PWD (person with diabetes) who worries constantly about their life partner in life who lives diabetes.

Exhausting is Injecting (or wearing an insulin pump) every single day of your life in to order live. 

Exhausting is being afraid of your future but pushing past the fear and living a great life despite a broken pancreas and a crappy family history.

Exhausting is having to do all of the above because we don’t have a choice. 

Diabetes is f*c$ing exhausting. 

Everything that diabetes requires us is to do is exhausting - and necessary and we do it. EVERY DAY,. 

But what’s really exhausting and incredibly maddening is having to take the time to correct the media when the report  deadly inaccuracies on a story about diabetes. 

Because diabetes is not a one size fits all disease and mistakes when it comes treating diabetes are deadly. 

Reporting that someone was in need of insulin when they has a low blood sugar puts countless lives in danger. 

Giving insulin to some who is experiencing low blood shock  will kill them or put them in a coma. 

Does the name Sunny Von Bulow ring a bell? 

Many in the diabetes on-line community, called; emailed, facebooked and sent tweets to the station regarding the story, including me. 

I left the Station’s General Manager a voice message on Sunday night, and he not only called me back on Monday, he'd pulled the video from the website promised to go over the story with a fine comb and correct any of the misleading statements. And he promised to  talk with the reporter about the all the issues.... And he also promised to call me back. 

And you know what? He did. 

We spoke about an hour ago and I was impressed.  The GM wanted to make sure the right facts were in the the story before he reposted the video on their website and he told me his news organization had reached out to the Chicago JDRF & ADA regarding the story. He also felt that it reinforced the fact that diabetes and reporting on diabetes is more complex than most people think. He wanted to know how insulin pumps actually worked and talked about that in great  detail  - And we talked about all the work that being on an insulin pump required. 

I explained to him what a CGM was and why it was important. 

I also explained that every person living with type 1 has a fear that some one will try and give us insulin if we’re incapacitated from a low. And that the public takes what television reporters say as fact - even when what they say is far from the facts.

I mentioned the DiabetesAdvocates and the quest for "the media to get diabetes right."  we talked about diabetes in the media. 

And I appreciated his professionalism and how swiftly he rectified the problem. 

I pointed out that story was picked up by other media outlets, and that while the original diabetes mistakes were corrected, they were replaced by new ones. 

One variation of the story said that the mom had type 2 and that insulin pumps eliminate low blood sugars, and for some reason, other news outlets referred to Jennifer as having “an insulin pump installed,” you know, like a transmission. 

SIDEBAR: The NY Daily News does have a version of the story that was much more on point - Kudos to Erik Ortiz for doing his diabetes research!

And lastly, I mentioned that Alexsandra Sheridan did a wonderfully and brave thing in saving her mother and herself from a car crash caused by a low blood sugar. 

This brave little girl treated her mother's low and comforted her while they waited for the ambulance. 

And instead of focusing on that - Those of us in the Diabetes On-line Community were forced to focus on the mistakes in the piece -made by the media -  And it didn't have to be that way. And is shouldn't have to be that way - EVER.

The media should take the time todo the research and get diabetes right in any and all stories about diabetes. 

Living with diabetes is indeed exhausting.... And trying to correct diabetes myths and mistakes  in both the media and the public’s eye is incredibly exhausting - And both diabetes and the diabetes mistakes in the media are never ending.