Thursday, August 25, 2016

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’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. 
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. 
Yesterday, 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. 

Monday, August 22, 2016

Life and Diabetes Hacks - AKA, Chilled Sharpie Marker FTW & My Sanity

I’ve been tweeking things up as of late in life and life with diabetes  - and by “tweeking,” of course I'm talking about life hacks. 
Nothing crazy, but still - little changes = big ones. 

Chilled Sharpie Marker FTW & My Sanity
I’ve started keeping a Sharpie Marker in the fridge, on the shelf where I keep my insulin. 
That way every time I start a new insulin bottle I can mark the date the bottle was started on the bottle and the box - no more wondering when said bottle was opened, or not being able to remember which insulin was the one that was temporarily lost in the fridge and required opening a new one, and not being able to remember what was which, when the lost bottle was found.  
**I also keep spare insulin reservoirs and a couple needles in the fridge because it saves me some extra steps. I can fill up my insulin reservoir while standing at my fridge. Sanity saving for sure.

Switching from Juice Boxes To Cute Little Juice Cans
I recently switched from juice-boxes to aluminum bottles of Dole© Pineapple juice cans - and keep 2 by my bed - just in case. 
The reason for the switch was easy. 
One day I went to the local grocery store and they were out of my favorite juice-boxes. Bummer, until I noticed the little Dole©  Pineapple juice cans on the bottom shelf.
  1. They cost the same price as juice bottles
  2. I think they are recyclable
  3. 6 ounces each with 24 grams of carbs, one usually is all I need to treat a middle of the night low, but YDMV
  4. The cans are more durable (as in they don’t get smashed, especially when I toss one in my bag to go for a workout,) and they remind me of my childhood.
No More Bottled Water For Me
I made the switch to Brita filtered water bottles and Brita filter pitchers quite some time ago and I couldn’t be happier. 
I still feel guilty about all the plastic bottles of water I’ve been responsible for over the years, but at least I’m no longer adding to the problem.
The Brita Sports bottles are 20 ounces, come with their own replaceable water filters and they pay themselves 10 fold. 
I believe mine cost $8.99 each and I cannot remember the last time I purchased bottled water. 
I also have a really nifty Thermos Water Bottle with a flip lid that holds 20+ ounces and allows me to add up the times I refill it via a twisty cap that keeps track. VERY cool and both Brita and Thermos bottles are PBA free. 

Speaking Of Bottled Water And Not Buying It 
I now only buy seltzer water in packages of 12,12 ounce cans.  Soda companies like Coke and Pepsi see the sparkling water marketing growing larger every year and are jumping on it - said companies (and others,) are down sizing the cans in both can size and cans per package, so they can make more money. I won’t purchase from those companies because that’s a crappy thing to do to their customers.  

Back To Filtered Water
I keep a recycled glass 64 ounce milk bottle in the  fridge filled with filtered water because EVERYTHING TASTES BETTER IN GLASS. 

Speaking of Water And Keeping Hydrated 
For as much water as I drink (and I drink freaking tons,) not to mention I moisturize like crazy, my skin is still very dry. 
I think my dry skin has to do with diabetes and being on several different medications to stay healthy. 
I’m trying out some different options and will report back on my findings, so stay tuned~

Breakfast and Morning Snacks Upgrade, Thanks To Summer Fruits and Veggies
Not really change, but still worth sharing. 
Every morning I make a fresh smoothie with frozen blueberries or what every fruit I’ve purchased at the local farmers market and lots of fresh basil and mint and protein powder -it’s yummy quick and easy to bolus for. 
And when I feel like grazing mid morning - I have a kind bar and about  3/4‘s of a cup of sweet yellow grape tomatoes. 
I get almost 2 servings of veggies from those sweet delicious tiny tomatoes and damn if they aren’t tasty!

My Canned Tuna Ah-HA Moment - GAME CHANGER
So back May when I had my surgeries and stayed with my friends for a few days to recover - I discovered something that changed my tuna salad loving, life!
My friends C & D keep their cans of tuna refrigerated,  that way when they make tuna salad, the tuna is already chilled. 
OK, this changed my life because in all of my years, my family NEVER kept canned goods in the fridge - they were always kept in the pantry. 
But over the years whenever I was hangry for a tuna salad, I would grab a can, drain it, throw some horseradish and mayo in (both already chilled,) and never had the patience to let the tuna salad chill - I’d end end up eating it slightly below room temp and some of the magic was gone. 
Now, I always throw the tuna cans right in the fridge - no need to wait for the tuna to chill. 
Tuna salad magic is back and seriously life changing! 

And you have any little life/ diabetes hacks you feel like sharing, that would be cool~ 

Tuesday, August 16, 2016

Novo Nordisk, AskScreenKnow®, Rev Run, T2 Diabetes & The "Am I At Risk?" Campaign

Diabetes, "it's tricky," no matter the type.

Today I'm writing about t2 risk assessment because as a person with t1, I have friends and family members with type 2 - and I have many friends and family members who might be t2 - and I know I'm not the only one.
This one is for them - because knowledge is power and we are in this together~
Novo Nordisk has a site call, (part of their Cornerstones4Care program,) that urges Americans to learn their risks when it comes to Type 2 Diabetes and gives them the tools to do so.
The site is all about encouraging people to know their diabetes risk factors and allows them to via a free diabetes risk assessment
Novo has teamed up with Rev Run (yep, that Rev Run,) and his very cool wife Justine, who both have loved ones diagnosed with type 2 - and have their own D risk factors.
Along with the easy and quick t2 diabetes risk assessment, the site is  filled with videos from Run and his wife Justine, including videos re: healthy recipes, exercise,etc. It's good stuff.  

Yesterday I was able to talk with Rev Run and Certified Diabetes Educator and Health Consultant, Jeannette Jordan about AskScreenKnow® and Novo’s “Am I At Risk?” Campaign, currently touring the country and whose temporary housing in my own back yard - Philadelphia’s famous 30th Street Station, now through August 21st. 

Here’s our convo. 

Kelly: Tell us about AskScreenKnow® and Novo's “Am I At Risk?” Campaign.
RevRun: is actually website and people need to go there - first and for-most and get there risk factor assessment for type 2 diabetes. 
I’ve been working with NN for a few years now. ago. 
I found out that my father had Diabetes years ago and that his diagnoses made me at risk. My manager, Mike Leman was talking to some people at Novo, telling about his father (who was also diagnosed with t2,) and my father and we thought it was a perfect match because I do “Words of Wisdom.”  I speak to people about all types of wisdom and I thought, it must be time to talk to people about health. 
So I took my screening and found out that I didn’t have diabetes, but I had so many risk factors, that I wanted to push this so everyone would know that they could be at risk.
“Am I at Risk?" is an interactive display at 30th Street station - there’s an iPad right there on the display where you can take your risk assessment.
Novo's "Am I At Risk?"  Campaign at 30th St. Station in Philadelphia
If you can’t get down to 30th St Station in Philly, you can go on your computer and take the assessment right there on
It’s really about knowing and recognizing your risk factors. 
Me: That’s so important because I think a lot of people are afraid to know their risk factors when it comes to their health - whether it’s diabetes, heart disease, high blood pressure, etc. 
RevRun: Yeah, they’re afraid, but I tell people to do it afraid. 
That’s one of my favorite quotes because afraid might not go away, so you need to walk yourself to the Dr. and figure it out. 

Kelly: YES! I love the pledge on the site after the assessment. I think it’s a great thing that people pledge to make an appointment with their Doctor within 3 to six months of taking the assessment, because it’s always going to be in the back of their heads. 

RevRun: It’s always is in the back of their mind, and it’s always in the back of my mind. every single time I’m taking care of myself, walking, eating healthy. 
I’m always wondering, is this the correct portion, etc. 

Kelly: I know that small changes really equal big ones - can you let us know what small changes you and your family are doing to stay the course? 
RevRun: I go walking quite a bit. I find walking to be very effective - 
Kelly: ME TOO.
Rev Run: I don’t walk very fast or very slow - I keep myself in the middle and I know I have to keep myself very active- that’s always on my mind. It’s always on my mind and I walk daily. 
I watch what I’m eating and I make sure I don’t cheat - I watch myself - I make sure I don’t cheat . Sometimes I find myself a little bit off the beaten path
Kelly: You need to treat every now and then - I don’t like to use the word cheat but I do like to use the word treat. When you tell someone that they can’t do this, this and this, and that they have to do this, this and that, it’s a lot. 
I think a treat every now and then makes it easier to to the right thing most of the time. 

Lots of laughter from Rev Run and CDE and AskScreenKnow®  Health Consultant, Jeannette Jordan

Jeannette Jordan: You’re exactly right! To take everything away from people that they love and enjoy, it becomes very difficult - and they’ll do it for a little while, but then they’ll stop. 
But small life style changes can yield big results and as Rev said, walking is one thing, and as a Certified Diabetes Educator, we also encourage people to look at what they’re drinking  - a lot of people drink sweetened drinks like sodas, juices, sweet tea. 
 And I’ve found if people make the switch to calorie free/sugar free beverages, they reduce their carb intake drastically, because we drink all day. 
Also, just cutting down their portion sizes goes a long way. 
According to the ADA, 1 in 3 Americans are at risk for Type 2 Diabetes.

RevRun: We also have recipes on and they are very healthy and Very tasty 
Kelly: Yes I know, and as soon as this heatwave is over, Im trying that  backed chicken recipe! 
Rev Run: That’s a good one!
Me: Actually, I want to try them all. 

Kelly: Jeannette - On a personal note, I want to thank you for what you and other Certified Diabetes Educators do  - you guys show us the way!
Jeannette: Thank you! 

So then I explained to Rev Run what/who t3’s are and asked him what advice he has for t1,t2, and t3s: 
Kelly: What advice do you have for t1, t2,t3s 

RevRun:  There are so many faces that make-up t3s, and that’s what were talking about the diversity - everyone needs to know their risk factors when it comes to t2 - if you you’re at risk and don’t know - get assessed. 

Kelly: What advice do you for anyone living with diabetes, no matter the type? 
RevRun: Everything in moderation, portions control, walk, keep a balanced life and see your Dr. regularly. 
Rev and Jeannette, thanks for talking with me(and by me, of course I mean us,) Novo Nordisk's AskScreenKnow®,  the "Am I At Risk Campaign and thank you for being Diabetes Advocates! 
If you have a friend or a love one who you think would benefit from a type 2 diabetes assessment (btw, it takes less than 10 seconds,) send them to
Go a step further and sit next to them while they take the assessment 
We are in this together and there is strength in numbers! 
#### is the website. 
 The interactive “Am I At Risk” Campaign will be at 30th Street Station until August, 21, then heads to Minneapolis to The Mall of America from Aug 26-28! 

RevRun can be found on twitter @RevRunWisdom, so if have a question for him - send him a tweet using the hashtag #RevOnASK
RevRun can also be found on  Instagram @revwon

*Jeannette F. Jordan is a national expert, author, and public speaker on nutrition, diabetes prevention, and healthy living. She’s a registered dietitian, Certified Diabetes Educator, and former spokesperson for the American Dietetic Association@

Friday, August 5, 2016

I Don't Feel Like Diabetes Today - But Thanks To The DOC, I'm A Buttercup, So I will~

Because when you know you're not alone, you can "suck it up,Buttercup," with the best of them~
Today I am a Buttercup~
I don’t feel like doing diabetes today. 
Yep, I don’t feel like bloody dealing with diabetes in any shape or form.
And today for some reason, the thought of constantly checking my blood sugars and counting carbs each time I contemplate putting food into my body/ wondering if I need a correction bolus to even things out, makes me want to scream.

Nor do I feel like dealing with a lunchtime elevated blood sugar and downing tons of water that will make me pee like a racehorse. 
I’m annoyed that after three days of damn near perfect numbers, I stubbornly waited to switch out my site and paid for my bull-headedness with a 263 #bgnow.
I don’t feel like worrying that this brand new pump infusion site, may or may not syphon insulin and I didn't like realizing after the fact, that I placed said infusion site in a spot that will be difficult to access when I go swimming on the beach this weekend. 
If the site does indeed suck up insulin as opposed to just sucking, I can already see myself struggling to disconnect and connect  - sitting on my beach chair and draping myself in towels, stretching my legs and the leg of my bathing suit towards my chest and fumbling until I hear the “click” that means insulin will once again be subcutaneous flowing through my body. 

Of course I could put in a new site, but real-estate is valuable on the island of Kelly K, and if this site does work I  wont replace it until Sunday morning. 
Speaking of insulin - I don’t feel like worrying that my insulin will go skunky because tomorrow the humidity will be back with a vengeance.

Yep, I don’t feel like dealing with diabetes today. 

I will, because I must - and so will you.

But it feels really good to say I don’t feel like dealing with diabetes today, because somehow saying it out-loud/typing it out-loud and sharing those wordsfor all the world to see, and giving me the strength to “suck it up, Buttercup, it” and do what needs to be done. 

Sharing these thoughts with you reinforces the fact that I am not in this alone, which means I can "suck it up, Buttercup," with the best of them! 

So thanks guys and carry on!  

Tuesday, July 26, 2016

I Heard Back From UnitedHealthcare - Not Impressed.

Yesterday I wrote a Facebook status which with some alterations and additions, morphed into today’s blog post - because #diabetesaccessmatters

I reached out to UnitedHealthCare several times regarding their decision to limit their customers pump choice to Medtronic. 
I don’t have UHC as my insurance provider and I happen to wear an out of warranty minimed/ medtronic pump, which I love, but the thought of not having options when it comes to my diabetes and my health keeps me up at night. 

I received a response from UHC yesterday, it was impersonal to the point of being cookie cutter - and its wording made it seem as if my concerns were incidental and unimportant. 

My concerns are neither - they are specific and relevant to anyone with diabetes or living with a chronic illness. 

Lastly, the letter was signed “Consumer Affairs.” 
Talk about innocuous and none specific. 

A signature with a name ,department, and extension number would have been the proper and professional way to close the letter. 

Also “Consumer Affairs," if you’re going to forward my concerns to “the appropriate department,” please be specific and state who that department actually is. 

Like all of you in the Diabetes Online Community and beyond, I'm all about choice when it comes to my life and my life with diabetes – and the options I use to manage my diabetes.
I wear my pump 24x7, and as I stated above, it happens to be an out of warranty Medtronic minimed pump.
My insulin pump is on my body 23 hours a day - 7 days a week, and 365 days a year. 
My insulin pump has been with me at every major life event - including my mother’s funeral. 
It’s traveled with me around the globe and it’s been on my person (or on my nightstand,) at the most intimate of moments. 

I believe every single person and no matter the disease or condition, deserves and requires choice when it comes to their treatment options.
I understand that insurance companies may not be able to give their customers an array of choices regarding insulin pumps - but for God sakes give us choice. 
Don't dictate a piece of equipment that we must wear for four years and without option.

Don't send me a letter some poorly worded letter sent by the "man behind the curtain," named “Consumer Affairs.” 

And to both UHC and Medtronic, by removing brand choice from United HealthCare’s patients, you are also limiting CGM choices - so please don’t state in press releases that you’re doing to benefit the patient re: better pricing and diabetes technology.

Limiting a patients choice in diabetes technology, like insulin pumps; cgms, test strips, meters, and other diabetes medications, does not benefit patients - it benefits companies. 

Taking away our choices in diabetes management tools will become the norm instead of the exception, 
if we don’t continue to speak up. 

I have been so very happy with my mini med/Medtronic pumps these past 15 years of pumping, but the limitations imposed by UHC & Medtronic to others who live the diabetes lives, has pushed into a corner as a patient and as a consumer.

For the second  time in 15 years of wearing a pump, I feel compelled to actively consider
other insulin pump options besides Medtronic - while I still have choices to choose from. 

The whole bloody situation makes me 
angry - because #diabetesaccessmatters
And now in picking up the phone and calling my Reps in office. 

Thursday, July 21, 2016

Of Higher Blood Sugars, Increased Temporary Basal Rates, And Having Patience.

After a week straight of varying degrees of increased temporary basal rates, (between 138% and 150%,) followed by the past four days of high morning blood sugars followed by damn near perfect blood sugars in the afternoon and evening that boarded on the low side  and sans temp basals - diabetes had me feeling tired. 
I knew the crazy glucoaster ride was temporary - remnants of a double ear infection that’s taking it’s own sweet time leaving my unusually narrow ear canals. 

Things would be back to normal soon and I knew that, but I was all sorts of exhausted after dinner.  
And what I wanted to do was chill out on the couch and digest my dinner. 

Instead, I made myself go out and take a walk on the beach. 
I didn’t walk for the exercise - I walked for my head - and because the air temperature had dropped, the ocean was warm and it felt good to be outside. 
30 minutes into my walk, I ended up running into friends and I staying out until it was dark  - and when I finally walked in the door, my blood sugar was 150. 
I set a temp basal rate of 123% ( the lowest increased temp basal rate in a week,) and 
went to bed at 10:45 with a 128 blood sugar and no correction. 
When I woke up today and for the first morning in days, my blood sugar in the low 100s. 109 to be exact. 
And so far, things have been holding stready for the rest of the day. 

Patience is a virtue and I am stronger (and bitchier,) than diabetes~  

Thursday, July 14, 2016

After Six Days At The Children With Diabetes, Friends For Life Conference - It's Too Quiet.

After a 6 days at the Children With Diabetes, Friends For Life conference (aka, #cwdffl16,) in Orlando - it's too quiet. 
My Children with Diabetes, Friends For Life, green bracelet - otherwise
known as my talisman of hope~
It's too quiet.
No green and orange bracelets at every turn.
No Laura sailing through the hallways giving hugs or Jeff capturing memories with his camera.
No talking to strangers with green or orange bracelets, Who become friends you hug hello.
When my pump and alarm went off yesterday, nobody said,"is that me or you?"
No one to have dinner with and talk about the day; the night, the daily sessions, pool shenanigans, the parks and everything in-between.

No one walking up to you (or vice versa,) and starting a conversation just because you're wearing a green or orange bracelet.

No one to say: Are you OK? 

When I walked through Orlando airport on Monday, it was too quiet - even though it was jam packed.
No green or orange bracelets to be found - no matter how hard I looked.
Not even a lone test strip on the ground - and that bummed me out.

And I drank my coffee in silence in terminal 30 something - and not one person said hello.
It felt like the loneliest place on earth.... because it was.
And as far as I'm concerned, Orlando International Airport on the day I leave Children with Diabetes, Friends For Life conference, will always be the loneliest place in the world.

I'm home now, but I'm not.

This morning I looked down at my meter and didn't like the number, and nobody was there to say "it's OK."

No sessions that made you feel like you weren't the only one.
No friends running down the halls of the Marriott to hug you because it's been 365 days since the last time you saw them - or two hours.
No chocolate covered strawberries. 

No friends I've known forever, but are meeting for the first time in real life at the hotel lobby bar.
No friends I've just met during the conference - but feel like I've known forever.
No little girls running up and shouting: Mommy, her got a green bracelet like mine!
No carb counts already calculated at every meal.
No yearly Mojitos with friends who are family.

No "me too's." 

No people who "get it."

It's too quiet.

And I can't wait for #cwdffl7