#TBT #dblogweek Day 4: The Diabetes Stuff That Brings Me Down

It's day four of Diabetes blog week.

Today's topic is a #TBT from the 2014 Diabetes Blog Week. It's all about emotions and diabetes - the diabetes stuff that brings us down - and what brings us back up.  

May is Mental Health Month - diabetes impacts our physical and mental well being. Depression and diabetes go hand in hand - talking about it is key -as is know that we aren't the only ones who struggle. 

Seeking help and support from friends and professionals can only help. 

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There's so much about diabetes that brings me down.

The fact that diabetes is 24 X&, 365 days a year with no time off for vacations or good behavior and causes me to experience diabetes burnout more often than I’d liked

The stress that diabetes puts on me (both physically and mentally,) has the ability to make me feel like Atlas - and sometimes I fear that the weight will cause me to topple. 

Add the stress that diabetes has put on my family, and my friends with and without diabetes, and it is easy to become the girl with the weight of the world on her shoulders

. 

The fact that the public, for the most part - never gets diabetes right, and the same can be said for diabetes and the media. 

Diabetes Media Muck-ups put all of us on the defense and has us perpetually correcting the population. 

Don't even get me started on blood sugar craziness!

Then, there’s the people I’ve loved and lost to diabetes - I miss them them terribly and when I think about diabetes cutting their lives short it makes cry and makes me relive the grief of losing them.

Losing friends to diabetes is fucking hard.

Losing my sister Debbie to diabetes was fucking excruciating. 

Seeing my parents hearts break because they lost their child to diabetes was devastating. 

It changed our lives and our family dynamic forever - and to this day, we are are still dealing with the ramifications of Debbie's death.  

Personally, there are moments when I wonder the type of person I would have been and the life I would have led had diabetes not taken Debbie from us. 

And on those days, when diabetes brings me down into the darkness - light peaks through the darkest of clouds, and I am reminded of the gifts that diabetes has brought me.  

Those gifts are you. 

Our community, the Diabetes Online Community, has given me so much support, friendship and love. 

My diabetes friendships that span the globe, enrich my world, and have given me a strong sense of self and determination. 

Diabetes has given me a voice and requires me to speak up for myself and for the people I love. 

Diabetes (and my mom,) taught me to pull myself up by bootstraps and pull myself out of the muck. 

Sometimes on my own, other times I can’t do it alone. 

And in those times when I am struggling to stand up in, and get of the muck the most,  the Diabetes Online Community lifts me up, dusts me off, and acts as my compass and travel companions on the road to better. 

And I am grateful for the gifts. 

****FTR, I know I missed day 3 of Diabetes Blog Week. 

I will make it up and post, but I didn't want to get behind on day 4, too! 

Slate.Com : With Diabetes, "Even" Little Words Matter

This post started out as a post about the disgusting Mylan epi-pen price increase and how it mirrors the insulin prices increases, but then it turned into an article about Slate.com’s diabetes headline from yesterday, because the word "even" in the article title rubs me the wrong way.

I’m still working on the epi-pen article - and neither post is an Insulin verses Epi-pen article. Nope - both diseases are life threatening, both medications save lives and both price increases are appalling and I'm enraged at the eli pen price increase. 
WE ARE IN THIS TOGETHER.
Today’s post is about words - specifically the word “EVEN.” 
And how even little words can negate a price increase and add to diabetes stigma. 
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Yesterday, Slate.com ran an article with the headline: Good Lord, Even The Price of Insulin Is Skyrocketing.

Yep Slate, this is nothing new. 
The price of insulin has been skyrocketing for years -I now pay more for insulin than I did back in 1997 and more than my parents did when I was diagnosed way back in 1977. 
 Insulin is also a life saving drug, but nobody except those living with diabetes seems to care about the continual price increases. 

The Diabetes Online Community has been writing about about the high cost of diabetes for years - including the ridiculousness that is the ever increasing cost of insulins. 
Check out HERE, HERE, and HERE for a small sample of DOC voices on the subject.
Recently, the DOC has rallied behind #diabetesaccessmatters, because you bet your sweet ass it does.

Thank you, thank-you, thank-you  for featuring the insulin price increases in your publication. 
But,and of course there's a but. 

BUT what's with using the word "even" in your title? 
Using the word “even” in your title re: skyrocketing insulin prices detracts from the impact that those stratospheric price increases have on every single person living with diabetes who struggle to pay those skyrocketing prices in order to stay alive. 
Sidebar: You might say semantics, but not just my POV, btw. 

The word “even” lessens the struggle that millions of people living with diabetes are going through daily in order to pay for the insulin they/we require order to live. 

Diabetes is not cheap - and today it's more expensive than ever.

Wuestion: Would you have used the word “even,” to describe price increases for diseases such as crohn’s, life threatening allergies, or cancers? 
Nope, I don’t believe you would, so why is OK to use that word and in that context when describing the price increase of drugs for a group of diseases (type 1 diabetes, type 1.5, type 2 diabetes,) that millions and millions of people live with?

Not OK and here’s why. 

1. By using the word “even,” you’re subconsciously adding to diabetes shaming and adding to the stigma associated with diabetes. 

Being diagnosed with diabetes is often perceived as a character flaw, so maybe for some people reading your article, it might be considered OK for those of us who need insulin to stay alive, to pay a little more. 
It’s not OK.
Diabetes is not a character flaw - diabetes is hard fucking work and I haven’t had a vacation from my t1 diabetes in well over 3 decades. 
I’ve lived with diabetes longer than I haven't and diabetes accompanied me from third grade until I graduated from college and every day since. 
Diabetes was with me as I watched my favorite sister get married, went with me on my first date, stumble along side me through my first sexual experience and every one since. 
Diabetes has been my traveling companion to a dozen countries and at least 15 states. 

 Diabetes has made the move with me to different states; stood by me as I buried both my parents, discovered the Diabetes Online Community, and sat in the third row with me when my niece made her Broadway debut.
Type 1 Diabetes took the life of my older sister Debbie and broke my parents heart in the process. 
Diabetes has made me feel guilty and diabetes has me saying I'm sorry, even when I am anything but. 
Diabetes been the longest relationship I’ve ever had - braking up with diabetes is not an option at this time because there is no cure for my type 1 diabetes. 

Don’t even get me started on Diabetes Burnout!

Speaking of cure, the use of the word “even,” makes my disease seem less cure worthy and in actually, has the potential to lessen funds raised to find the D cure. 

But back to diabetes day to day - and the shear cost of living with diabetes. 
I know people with diabetes (type 1, t1.5, and type 2,) who can’t afford the cost of their insulin, or other medications, test strips, and diabetes durable medical equipment (insulin pumps, CGMs,) and play Russian roulette with their health every month because they’ve either run out of their meds/supplies before their prescriptions are due to be filled.
Or worse, they don’t have insurance and go without out because they’ve run out of money.  
Unfortunately, diabetes is not the same disease every day - some days you require more insulin, some days you require less. Sometimes you need to check your blood sugars 10 times a day, other times 7 will suffice. 
But if you live with diabetes, you're lucky if your insurance will pay for 5 test strips a day. And if you have diabetes and are on medicare - you only get 3 test strips covered per day. 
Did I mention that test strips are the litmus tests that people with diabetes use (as well as CGMS - but that a whole other insurance ball of wax for another post,) use to monitor their blood sugars and measure out their insulin. 
Insulin can kill if you admisister too much or too little - so YES, checking blood sugar is CRUCIAL AND EXPENSIVE.
Speaking of insurance - people with diabetes  (PEOPLE WITH ANY ILLNESS,) spend more time arguing with their insurance company over denials, mistakes, and fighting for lifesaving medications and procedures. 

So Slate, when you use the word “even” in your title, you aren’t doing PWD (people with diabetes,) a favor- because the majority of the public already think it’s our fault we have diabetes.  
Nobody, no matter the diabetes type, deserves to be treated any less than with respect because of their diabetes status. 

If you want more info regarding what it’s really like to live with diabetes, ask the thousands of people in the Diabetes Online Community who will be willing to share what it’s really like to live with diabetes - step by step, deductible by deductible, crazy ass high co-pay by co-pay. 

Lastly Slate, you’re a HUGE publication and online presence - and a great one.
I read your site daily and I learn and laugh from your posts. 
 Your words, even small ones have power, so please use them wisely. 

#dBlogWeek: Message Monday~

Day one of #DBlogWeek and it’s all about the message. And to quote Karen, the creator of #dblogweek, directly: " Message Monday: What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.” 

Living with diabetes isn’t about one thing - it’s about many things. 
The same can be said as to why I blog about diabetes and the messages that are important to me. I can’t pick one message or platform because there are so damn many - all important, each taking their place in front of the line on a rotating scheduled decided by life.
Diabetes and the media: I started blogging in 2007 because I was ticked at Halle Barre and her publicist’s inaccurate diabetes statements that were made in the media. 
I was sick of the diabetes inaccuracies and I needed both the public and the media to get diabetes right. I always considered myself a diabetes mythbuster and I started blog as a way to bust myths and stereotypes wide open and encouraged others to do the same. 
I want people to use the proper words when it comes to diabetes because words matter and words stick - accurate or not.
Humor: I’ve always used humor as a coping mechanism when it came to dealing with life - and life with diabetes, because I felt (and still do,) that if you can laugh about your diabetes, you can own your diabetes. 
I want others to laugh and become empowered because I know what it was like to lose someone I loved to diabetes because they felt like diabetes had all the power. 
Holy Crap, the DOC is AMAZING: About 2 months after I started blogging I realized that there was this amazing community called the DOC, and while I always knew I wasn’t the only one living with diabetes  - I never realized until I found my tribe that I’d been wearing an anchor of diabetes guilt around my neck for a long time - it was heavy and I was tired. 
And I never realized that diabetes burnout was a thing and that there was a loneliness to living with diabetes - until I  found others in the DOC and I no longer felt alone. 
It was because of the DOC that learned to flip my diabetes bitch switch for good, not evil. 

Becoming a Diabetes Advocate because it’s ain’t about me: Finding DOC has turned me into a passionate Diabetes Advocate because it made me realize that it wasn’t about me - it's about us - every single person in the world living with diabetes. 

We are in this together, no matter the diabetes type or which part of the world we live. 
#DiabetesAccessMatters for everyone - as does stripping safely and sparearose.org, and DSMA and that the Blue Circle is global and all encompassing. 
Through blogging I have found friends for life, who've taught and continue to teach me, every single day... and who have been there for me when I lost the one I loved the most. 

#IwishPeopleKnewThatDiabetes: Because of blogging, I’ve learned to not only cultivate my diabetes voice, I've become inspired by other diabetes voices  - and hopefully helping I'm paying it forward and helping others to discover and use their own d voices.

Finally, the big ass message is: WE MATTER. Every single person living with diabetes matters  - every single voice matters - and when added to the chorus of voices - mountains move and we are Khaleesi type of powerful. 
And yep, you know after last night’s Game of Thrones, I had to get a Daenerys Targaryan, aka Khaleesi reference in!
FLAME ON! 

Dear CrossFit: My Diabetes Homies & I Would Like You To Know....

NO, NO, NO. 

Dear CrossFit: My Diabetes Homies & I Would Like You To Know.... 

Making fun of people with diabetes isn’t funny. It’s offensive, disturbing and it perpetuates diabetes myths instead of perpetuating and teaching diabetes realities. 
And because of tweets/jokes/rubbish like yours, diabetes becomes an unending diabetes blame-game,a target and punchline, that keeps people living with diabetes and regardless of the type, in the Diabetes Closet. 
Your offensive tweet  also directly impacts funding for diabetes research. 
Diabetes shaming is a thing and a horrific thing at that. Diabetes shaming like your unfunny tweet makes fun of a very real group of diseases (t1 diabetes, LADA type 1.5, and T2 diabetes,) that are never ending and have the potential to kill. 

And just to be crystal clear, I didn’t develop my type 1 diabetes as a skinny 8 year old because I drank too much soda. 
And my friend Jen didn’t develop her t2 diabetes because of soda. She doesn’t drink soda, weighs 20 pounds less than I do and has always worked out. 
But Jen’s mother and grandmother have and had type 2 diabetes - so there you go.
Genetics came into play - as it usually does with type 2. 
And lets just say for shits and giggles that some people living with t2 struggle with their weight - as a company that promotes fitness and a healthy lifestyle, do you really think it’s OK to make fun of others via social media (or any other platform,) struggling with their weight???
Do you think it’s OK to publicly mock people struggling with their health via social media? 
NEWSFLASH: IT ISN’T.

Diabetes shaming in tweets like yours are exactly why people have difficulty managing/accepting and living with their diabetes. 

Diabetes, regardless of the type, is never ending, physically and emotionally demanding - not to mention financially draining. 
People with diabetes work so hard and we never get a break or a day off from living with diabetes - personally, I haven’t had a day off from diabetes in 13,687.5 days. 
As a Type1, I do not have the ability to make insulin because my own body attacked the part of my pancreas (the Islet of Langerhans,) that produces insulin, way back when I was skinny eight year old. I was in the hospital for 3 weeks and put on a 3000 calorie a day diet because I looked like a concentration camp victim - my body was literally starving itself. 

FTR: People need insulin to to live - and will die without. I could run marathons everyday and I would still require insulin to live. 

Do you know anyone that’s died because of diabetes? 
Unfortunately I do and I can assure it’s painful, scary, and you will never get over the loss or the pain. 

My older sister Debbie, who died of diabetes complications as a 32 year old type 1 in 1991, didn’t lose her life to diabetes complications because she drank to much soda. 
Debbie lost her life to diabetes for a multitude of reasons - all directly related to diabetes. 
Unfortunately, Debbie was diagnosed in the mid 60’s, a time when there was no such thing as fast acting insulins or diabetes technologies. The treatment for t1 diabetes back then was archaic the life expectancy of someone with t1 in the 1960s was grim.
 Not to mention that no one ever considered the mental side of living with diabetes, nor was  talked about, let alone treated.  Her little body was ravaged from years of living with t1 and watching her die was a tragedy. 
My parents never got over her death - and truthfully, neither have I. 

Are you aware that people with Type 1 can die from something called “Dead-IN-Bed,” syndrome? They die from a low blood sugar in their sleep. Nothing funny about that. 

Crossfit - You will never get a single dime from me. 
But hopefully Coca-Cola will take the extra millions and millions of dollars they have the potential to win in a lawsuit re: your egregious use of their logo/copyright infringement, and use said money to provide funding for diabetes research for the cure, Peer to Peer Diabetes Support, Artificial Pancreas research, grass roots diabetes efforts and the likes there of.  

Kelly Kunik
t1 PWD (Person with Diabetes) for almost 38 years. 

Special shoutout to Moira McCarthy for showing up in my Facebook feed the minute I logged on this morning and alerting the DOC! 

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Diabetes Blog Week Day 4: Changes - Where The Hell Do I Start?

Today is day four of Diabetes Blog Week - And today's topic is all about changes in all dimensions that you'd like to see re: diabetes.
Here are my thoughts (OK, it's a rant,) on the topic of "changes," and I hope you can relate~
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Changes when it comes to diabetes - where the hell do I start? 

For starters, I’d like the Diabetes Blame Games to cease. 

I’d like people (John and Jane Q Public & media folks, THIS MEANS YOU,) to get the diabetes facts instead of perpetuating the diabetes myths - regardless of the type.

Hey media - people with diabetes don’t attack, zombies do. 
Don't report about someone going into insulin shock while driving and and needing insulin - Insulin is the last thing they need and your going to end up killing someone. Ever hear of Sunny VonBulow - GOOGLE IT.

And stop with the whole “he or she suffered from a a diabetes/diabetic attack.” 

And while I’m at it, stop using phrases  “suffers with diabetes, or diabetes sufferer.” 

I don’t suffer with diabetes. I’m annoyed and frustrated by diabetes at times, but it’s part of me and if I thought of myself as continually suffering with diabetes - I’d never be able to get out bed in the morning. 

And enough with the diabetes story lines on TV and the movies that are completely wrong! Seriously, WTF. 

And while I’m on a roll - I don’t want to hear that something is “diabetic friendly." 

I don’t consider something jacked up with carbs that causes me extreme gastrointestinal distress, friendly at all. 

Here’s something to marinate on: The rift between the types will stop because we are all different branches on the same diabetes family tree and the whole blame game T1 Vs T2 and ignoring those with  LADA1.5 has got to go the way of the Dodo bird. 

 I’d be thrilled if people stopped telling me that if I just gave up all things white, I’d be off the demon insulin in 30 days - for the record you can’t cure or reverse diabetes in 30 days - if it were that easy none of us would be blogging about diabetes and Pharma would lose a valuable cash cow. 

Speaking of Pharma, I’d love it my insulin expenses, pump supplies, and test strips (with insurance btw,) didn’t equal a God damned Mercedes car payment every month.

Speaking of insurance, they don’t make generic insulin, I need that shit to live, so stop charging an arm and a leg for  one freaking bottle of my elixir of life!

And reality check, 10X3 does not = thirty days worth of insulin pump supplies. 

Also, I can’t effectively maintain good blood sugars if you only allow me to test 3 to 6 times a day. 

And speaking of the cure - If I one more Dr./Organization says we’re 5 to 10 years from the cure, I will go so damn Jersey on them and they won’t know what hit them. 

My list of changes could go on, but I don’t have all day and neither do you. 

So yeah, I want changes when it comes to diabetes - and between you and me - it’s up to us, as people living with diabetes to make those changes happen.

Together, we need to yield our collective super powers and be the change - And I know we can do it! 

Dearest Miss Manners: Me Thinks You Know "Jack" About Living With Diabetes

Update2/27/14 : I was wrong re: Miss Manners not checking with someone with diabetes. Miss Manners has a son with t1 diabetes(he was diagnosed at the age of twenty,)  who helped pen the post in question. And according to their interview over at DiabetesMine re: the post in question. Mr. Manners does test on a plane from time time- which is interesting because that's not what was written in the post on diabetes etiquette that caused such a rumble in the diabetes jungle.  
So yes, the do know "jack shit" about diabetes - Even if that didn't come across in their post.
Here's the thing: I believe if Miss Manners & company had chosen their words more wisely we wouldn’t be having this discussion because there wouldn’t have been such a blow up.
It would have saved a lot of heartache and hurt feelings and it would have helped everyone reading their post had they shared their connection to diabetes. 
And lets say Mr. Manners didn’t want to disclose his diabetes, (he never stated that, but I totally get that if it was the case, it’s his right and his diabetes) they, and I say THEY because I’m still not entirely sure who wrote the piece after reading the interview over at "The Mine"  could have phrased the post in question somewhere along the lines of:  
After consulting with a member of my family who lives with t1 diabetes, I’ve come to the conclusion Gentle Reader that testing in public can make others uncomfortable, but do what you must, just consider others around you -yada, yada, yada.
Personally, I’m very glad he tests on a plane without always running to the bathroom, but it would have been incredibly helpful, educational & honest had he actually shared that information on the post in the first place. 
XXXXXX

Late yesterday afternoon I read a tweet from Diabetes Blogger, Dan Fleshler  
( @Fleshlerd  The Insulin Chronicles) about a recent Miss Manners post and her  response  to a Washington Post reader 

The question posed by the PWD: 
DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic.  I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later.
Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane’s lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies.
Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?Her response:
GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. 
Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.

You can read the whole thing HERE , be sure to scroll 3/4's of the way down in her column,Miss Manners relegated blood sugar testing to the restroom when not at home. She made diabetes care sound as if it was something to be hidden and ashamed of. Miss Manners is WRONG. Here's my letter to her - And I hope you write your own and post it on the website~
Sixuntilme, @SaucyGirl/ Nacho Blog, Diaturgy , StrangelyDiabetic, The D-Log Cabin, TextingMyPancreas have written excellent responses - check them out! And when you write a post/ response, please leave a comment with the link and I'll be sure to post it! 

Dearest Miss Manners: 

Me thinks before you comment on diabetes etiquette to a reader with diabetes,  you should walk a mile or ten in people living with diabetes shoes. 

Testing ones blood sugar is a necessity, not a luxury and should not be relegated to the shadows of dirty restrooms . 
When one needs to test ones blood sugar, it doesn’t matter where or when. 
Diabetes doesn’t care where you happen to be when you’re blood sugars are starting to head south or north. 
MM, Why should those of us living with diabetes get up and test our bloodsugars in a dirty, stinky, tiny plane restroom that may may or may not be spewing with bodily fluids, not to mention a shitload of germs - both literally and figuratively.
Miss Manners, are you aware that the amount of blood needed for to test is less than the amount of blood generated from hang nail? 
Are you also aware that you are the one with the issue - Not the person testing their blood sugar? 
There’s already shame associated with having diabetes and the fact that you are telling this PWD (person with diabetes) to hide in a public restroom is not only ludicrous, but it’s damaging to that person’s self confidence and owning and  controlling his own diabetes. It's unsanitary and it’s dangerous.
Would you suggest that a mother breastfeed her child in said dirty, small and  cramped restroom? 
No, me thinks you would tell her to discreetly breastfeed her child from her seat and to do it in the most unobtrusive of ways. 

I believe your exact words on the subject were: 

“There are discrete ways to breastfeed. You don’t want a woman to occupy a bathroom for a long time because other people have to use it. I think it’s extreme to make women use the bathroom.  And it’s a rather unpleasant venue anyway. If the baby has to eat, the baby has to eat. But there are discrete ways to do it and there is certainly no excuse for flaunting it.”

So different than this part of your response to the person with diabetes: 

"Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others."

NEWS FLASH: Miss Manners - While You tout yourself as an authority on manners, you are clearly and most certainly not an authority on living with diabetes.

IF you were an authority on living with diabetes, you'd most certainly realize that when you live with diabetes you do what you have to in order to live your best life possible. 

And in order to live your best life with diabetes one must test one'sblood sugars over and over again - Regardless of the where or the when and who pray tell is around. 
Same goes for administering insulin. 
Again darling, if you knew anything about diabetes, you'd realize that flying causes stress and anxiety and both wreak havoc with blood sugars and that airplane bathrooms are less than sanitary, not to mention really cramped. 

It's quite obvious that you know jack about living the diabetes life and yet you give advice on diabetes do's and don'ts.
The fact that the person who wrote to was testing at all should have been applauded instead of condemned, discouraged and shamed, which is what you were doing. 

Every person I’ve ever encountered who lives with diabetes (and trust me, as a Diabetes Blogger, I’ve encountered thousands) has always done there best to test and take their insulin for that matter in the most non obtrusive and sanitary of ways whilst in public. 

Miss Manners, did you actually talk to people living with diabetes before you published your answer, and if so, how many? 
Have ever attended nursing or medical school? Have you taken a class at The Learning Annex about living the diabetes life. 
What books have you read diabetes? I can recommend several- Ping me.

And while I agree that the evolution of diabetes technology has certainly evolved, I’d be remiss if I didn’t point out that said evolution allows people living with diabetes to test wherever and whenever they want or need to, be it on a plane, train and or automobile. 
People can test their blood sugars while sitting in Starbucks or on the beach or movie theater. 
Miss Manners - I know that you’ve written many an article on the art of apologizing.  

Me thinks (actually, me KNOWS) that the polite thing for you to do would be to put your money where your mouth is and offer a sincere and heartfelt apology to all of the people living with diabetes that you’ve clearly offended. 
Sincerely, 
Kelly Kunik
Living with Type ! Diabetes for 36 years & testing her blood sugars wherever and whenever needed. Including  but not limited to: On a plane, train, car, wave runner, theater, church, synagogue, Starbucks & at my mother's funeral - Because I had no choice but to. 

I Can't Walk Away From Diabetes…...

I wish that people would take the time to get diabetes right in all its dimensions - And remember that it's not what you say, but it's how you say it - And that diabetes, regardless of the type, isn't a choice or a character flaw~
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I can’t walk away from diabetes, but if I could, I totally would. 

Hell, I’d run away from diabetes and and never look back if it were physically possible. 

I’d climb Everest and scream from the top: SO LONG DIABETES (and probably do my "Ricola" impersonation) - And I’d dive into the deepest depths of the ocean where the really scary shit lurks, if it meant leaving diabetes behind for good.

Nope, type 1 diabetes walks with me - Sometimes I’m in the lead, other times diabetes is. But regardless of who’s leading and like it or not, we are always walking together.

When I was little, I did walk away from diabetes in a round about way. I didn’t test like I was supposed to, I snuck food - And I’d hop on my bike and ride to the end of the island just to get away from hearing my family talk  about me and my diabetes - or their diabetes for that matter. 

And I have a strong suspicion that you might feel the same way about walking/running away from your diabetes as I do - and regardless of your diabetes type. 

Yeah man, we’d all be diabetes expatriates if it were possible, but it’s not. 

We can’t walk or run away from our diabetes, and we can't hide from it - We have to grab it by its proverbial balls and face it head on. 

I find it much easier to  walk/run towards people with diabetes and by doing so I find strength in my community and in myself. 

Together we run towards support and comfort and and find both in others who are living the diabetes life - And in all diabetes forms and types.  

And I am so grateful for that. 

So when I received a PR pitch from a big university inviting me & other diabetes bloggers to 'walk away from diabetes’ yesterday, I gotta admit, I was ticked off on many levels. 

Here's the thing: People living with diabetes don’t have the luxury of walking away from diabetes.  

And those who do “walk away from diabetes” usually do so in the metaphoric sense - As in walking away from caring about their diabetes and those folks end up very, very sick - Or worse. 

I was offended because the title of the campaign stemmed from one of the institutions own studies (which makes total sense) but was based on people who didn’t have diabetes but who were hoping to prevent type 2 diabetes by walking.

Turns out, the campaign was really focused preventing diabetes - And that irked me.

Not the prevention part (OK, some of the prevention part,) but what really irked me was the whole “preventing diabetes is as easy as walking,”vibe that was being given off.
I think we can all agree that exercise helps with all sorts of stuff, including blood sugars - But diabetes in all it's forms isn't so cut and dry.  

I couldn’t have prevented my type 1, and I have a whole boatload of friends with t1, t1.5 & t2 who couldn’t have prevented their diabetes either. 

And I’m a walker - Always have been. I walk for my body and my mind - not to mention my ass. 

So I emailed the PR Person back with my number and he gave me call a few minutes later. 

I basically told him that I couldn’t walk away from my type 1 diabetes and neither could my t1, t1.5 and t2 family couldn’t either. That people with diabetes are more often than not blamed for having diabetes - And that IMHO, the phrase ‘walking away from diabetes’ makes the majority of the public think that having diabetes is a choice and a character flaw - And it is neither.

I mentioned that diabetes is complex and if walking allowed us to be free of diabetes, we’d all walk from New Jersey to China without stopping or complaining & mentioned the fact that t2 has a strong genetic link.  

The phrase, 'once a PWD, always a PWD' crossed my lips, and then I shared that all sorts of problems occur when people stop thinking their diabetes (t2 or otherwise,) is no longer an issue. 

 And if they were going to present a campaign based on one of their studies re: diabetes and during Diabetes Awareness Month, they should strongly consider a study that was done on people currently living with diabetes and use a title for the campaign that doesn’t perpetuate diabetes myths and stereotypes.

PR guy said they were looking for all sorts of diabetes tales, not just type 2, and that they'd make some changes and he thanked me for talking with him.

Today I received an email saying that changes had been made to the websites original wording - And to their credit, they did make some changes . 

They used the term “diabetes prevention” more and they gave the prevention part a type 2 slant. 

But that still didn't sit all with me because I still felt that people with t2 were being blamed. 
There was no mention of genetics and type 2 or how type 2s (just like other people living with diabetes) are not one size fits all.
I know so many people with type 2 who refuse to come out of the 'Diabetes Closet' because they are afraid of the stigmas associated with type 2 - And my heart aches for them.
(((SIGH))) 

As for me, I’m going to keep walking and running towards others with diabetes in all dimensions - And I will continue to walk for my health, (both mental and physical) as well as my ass. 

But I can't walk away from diabetes. 

How Not To Engage With Patients On A Google Health Chat Re: Diabetes

So things have been quiet on this end because of the holiday, and also having a minor local anesthetic procedure (not diabetes related, all is well, I'm cool,) on Tuesday morning, not to mention a short work week and trying to get everything done today and tomorrow.

 So when I received an invite for a Diabetes Google Hangouts  Health Chat that had a less than flattering diabetes description, I thought even though I was short on time and the diabetes wording was..... lacking, it might be a great way to have voices in the DOC  heard and to ducate others - and learn a few things myself. 

And yep, I did learn a lot. I learned that some companies who promote Rxhealth online, don’t know jack about patient engagement. 
And I’m angry for those who attended the diabetes google health hangout chat in search of information and support, who thought they’d have the opportunity to have their voices heard and who were told they’d have the opportunity, and then were denied it. 

So here’s a primer for others out there on how not to engage with patients on A Google Health Chat.

If you decide to troll the twitter and or Google looking for people with diabetes that you want to send last minute invites to (and according to the non response invites & the d chatter online, there were a lot,) know what said peoples relationship to diabetes is and why diabetes is so worry about diabetes. 

And please, whatever you do, DO NOT describe diabetes as a“relatively preventable disease” in both your invite and in your chat! 

The whole chat mantra of "educate, prevent and prevail" has a nice vibe to it for sure, but  the whole "prevent" part is misleading when it comes to diabetes in all its many dimensions.

And re: the Subject line of your email invite that read: Media Opportunity , and asking said invitee to be a “participant,”  is incredibly misleading if it is not a media op and all the invitees are not actually allowed to participate in any form, be it written or verbal. That's not only deceptive, it's wrong.

Here's the thing: The definition of participant  - At least according to Webster's is: one who participates. And related words include; helper, colleague, sharer, partner. 

There was no participation by those invited to attend the chat - none at all.  Instead, the panel completely ignored all of the participants in the chatroom who were typing their comments, questions and concerns because they weren't allowed to you know.. actually speak. 

And please, whatever you do, don’t blame the lack of engagement on the Google chat app and not being able to see the flurry of participants comments. 

Boyfriend, it was more than the chat app acting up. 

You needed to have someone from your company monitor the chatroom to field participants questions and concerns

.

 Here’s a thought: Have a coworker log in from their computer and text the panel moderator the questions being brought up, or if you’re the moderator and see that the chatroom seems quiet, why not look at the screen and ask: Does anyone have any questions? 

Wait a second, you did have people on your end in the chatroom, so why didn’t they give the the moderator a heads-up regarding the  questions? Damn Google Chat app!

Also:  HAVE an Endocrinologist on your panel, someone who specializes in diabetes and the entire endocrine system - And  who knows that not only children and the occasional 20 something are diagnosed as type 1s . 

Someone who not only knows, but is aware that LADA Type 1.5 is real and actually exists. Not a GP who suggests having a smaller slice of cake at the birthday party instead of the larger one and never once mentions going to see a Certified Diabetes Educator.

Have a Pharmacist who doesn’t use the example of a patient with t2 who times their blood sugars based on their TV show schedules. 

NEWSFLASH: Diabetes stereotypes are wrong and that example just perpetuates that people with type 2 are fat, lazy and watch TV, 24X7.

Was at least some of the info good and or helpful? Yes, of course, but the good/ helpful  info was clouded by the fact that people invited to the chat  weren't being heard, that people with diabetes were being told to make healthy choices and be healthy. REALLY?

It was frustrating that no mention of diabetes support, the Diabetes Online Community, Peer Support, or the importance of seeing an Endocrinologist and a  Certified Diabetes Educator to learn how to live with diabetes and make wise choices.   But not surprisingly, Google Ventures & Rani Therapeutics and oral insulin were mentioned, as were Mannkind & inhaled insulin. 

Keeping good healthy habits was a continual catch phrase, but people need to be taught what healthy habits are and how to go about making them and keeping them - Not to mention the whole mental side of diabetes and the stress it brings - including keeping healthy diabetes habits.  

You want to engage with people living with diabetes?  Then do just that - Talk with the people you invited instead of at them .

You didn’t have a Google chat, you didn’t even have a Google lecture, because at the end of a lecture people get to ask questions. 

You had such beautiful opportunity to talk with people living the diabetes life - To learn what their fears and concerns were  - You had the chance to educate  and teach - and be educated. And you had the chance to have a real dialogue. 

Instead, you did none of the above.There was no dialogue with the people invited, no conversation, no questions from the audience answered - There was nothing participatory about it. 

95% of diabetes care is in the patient living with diabetes and their family's hands - Participation in all dimensions of diabetes  - including Health Chats is paramount. 

######

For the record, I emailed back and forth with 2 reps from the company sponsoring the chat ( I hesitate saying who the website is because I don't want to give them any play online, still -you can read between the lines and you might figure it out,) before and after.  First I was told  by one of the contacts I never got back to them re: the panel, but  when I showed the person our string of emails to one another, I was told the original email was unclear. OK.  Finally both contacts basically blamed technical difficulties and poorly worded emails , apologized and said that they learned a lot about the entire process. Yeah, Ok.