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."
(SIGH)


It's too quiet.

And I can't wait for #cwdffl7

Tuesday, July 5, 2016

I'm Off To The 2016 Children With Diabetes, Friends For Life Conference

I'm currently sitting on a plane, waiting for my flight to Orlando to take off, and writing this pat from Blogger's app, so please forgive any hyperlink tomfoolery. 
I'm headed off to the Children With Diabetes, Friends For Life Conference (http://childrenwithdiabetes.com/activities/Orlando2016/) and I can't wait! 
I'm excited to spend the next 6 days with people who get it, and I can't wait to be surrounded by my green and orange braclet wearing family.
I can't wait to hug old friends and meet new ones. 
I can't wait to get my "batteries recharged," and I need my batteries recharged - CWD, FFL does that for me. 

Tomorrow I attend the Diabetes Hands Foundation's, Diabetes Advocacy Master Lab & I can't wait to take it all in.

For the second year in a row, IwishPeopleKnewThatDiabetes.org has a booth, and I'm so grateful for that.

And as I sit here on the plane, I am once again reminded that I have so much to be thankful for.
I will apply my sunscreen liberally and with gusto and do my best to post from the conference 😊

Wednesday, June 29, 2016

Diabetes Mysteries: Kelly And The Mystery Of The Missing Test-Strips

When I was in first grade I started reading the Encycledpedia Brown mystery books and loved them.  
In third grade I stumbled upon my older sisters Nancy Drew and Cherry Ames, Student Nurse mystery books and loved reading them and trying to figure out who the bad guy(s) were. 
I never got into the Hardy Boys books, but I will admit to watching the TV show because SHAUN CASSIDY. 
Solving mysteries was fun as a kid. 

As an adult, solving  diabetes supply mysteries takes up way to much time and it's bullshit. 
#######
Yeah, I don't have time for this for this shit.
I placed my three month supply order of test strips last week with EdgePark

Cut to Monday when I received an automated message from EdgePark letting me know order had shipped. GREAT and good to know. 
Late yesterday morning I received another automated message from EdgePark telling me that my order had been received and should be shipping in one to two business days. 
OK, that's WEIRD and dare I say...mysterious?  
Maybe Edgepark filled my RX twice - which would mean massive amounts of crap with my insurance. 
I called EdgePark, waited on hold for 18 minutes and 37 seconds until I was connected to  a woman who told me that I did indeed have two orders shipping out.
Again, WEIRD.  
So I cancelled the second order and as I was about to hang up, the woman on the other end of the line stated: You’ll receive your 12 boxes of test strips tomorrow - have a nice day! CLICK. 
Here’s the thing: 12 boxes was half of my three month order - I normally get 24 boxes (down from 27,) and 200 strips a month won’t cut it. 

I thought (OK, PRAYED,) that she made mistake or that I heard her wrong and I called right back, waited another twenty minutes on hold before speaking with another EdgePark CR who told me that: 
  1. CareCentrix had cut my order (RX) in half
  2. the reason I had two orders out was because they were going to try and bill CareCentrix and my insurance twice. 
BIG MYSTERY - not solved, but uncovered.  
First: Why wasn’t I informed my order was cut in half? 
Second: Why didn’t anyone tell me the reason behind the double order in the first place?? 
Three: What if CareCentrix/my insurance, wouldn’t pay for the second order, which was the order I had just cancelled? 

The CR couldn’t tell me why the order was cut in half and informed me that they would have done their best to get paid for the second order that I had just cancelled 30 minutes earlier.
Me: OK, but nobody told me that my Rx had been cut on half and what if my insurance wouldn’t pay for the second and now cancelled order? 
EdgePark: Well...... we would have done our best to get the money.
Me: Would you have charged me the full amount if I hadn’t cancelled the order and my insurance wouldn’t pay? 
EdgePark: Ahhhhhh. probably not? 
YES, her response sounded more like a question than an answer.
ME: Yeah, I need my full order of strips - how can I make that happen? 
EdgePark: Call your Dr’s office and have them resend the script to CareCentrix.

So that’s what I did, and then I called CareCentrix. 
I had a direct line and name of someone at CareCentrix because I’d an issue with EdgePark and my test strip order in December. 

YES, I know this story is long - please stay with me,folks~
I called my contact, and who, according to her voicemail was out of the office for a week, but who and left a name and number of her counterpart - a woman I shall call G. 
G who was very nice and understanding when I called and explained the situation - and she was a bit perplexed. 
She told me that she would work to get the remainder of my strips approved and promised to follow up with me - which she did. Calling me yesterday afternoon to let me know she’d called my Endo’s office and was working diligently to get the problem solved. She was a former nurse and she new the importance of checking blood sugars. 

And I also had a message from R, a manager over at EdgePark who promised he would call me back on Wednesday (as in today,) and that’s exactly what he did. 
R apologized for the test strip issue and told me that the reason my order had been cut in half was because my RX from December had expired. But that edgepark had received a new Rx on Tuesday and sent out the rest of my strips to me by Friday.

ME: Thank you for calling me back, R - I really do appreciate it, but that can’t be right. My RX was dated 12/27/15 and I placed my order last week.
So, even though I didn't have my order refilled in March because a friend of mine had switched strip brands and had given me her 3 month supply of Onetouch strips, and I had explained that very fact last week when I placed my order and was told it wasn't a problem . 
And even if my Rx technically expired in 6 months from the date it was written, ( my Endo normally writes them for year, but ok, I could be wrong)  my prescription refill would have still been good through Monday, June 27th, which was two days ago, and well after my original order was placed. 
Also, that's not what your CR rep told me yesterday.

CRICKETS.

R was a good egg and was trying to help rectify the situation and I appreciate his hustle and follow up,  but nobody - not EdgePark or CareCentrix can tell me why my original Rx was denied in the first place. The Rx I’ve been getting for years. 

G from CareCentrix called me back today to tell me she received the Rx from my Dr's office and would work to approve the additional strips. 

Then I told her what R had told me. 
And I also stated that every single time I need to get a DM order filled, it's never seamless, wether has to do with pump supplies or test strip supplies, because there are three companies involved when it comes to filling out my durable medical equipment prescriptions. 
Having to deal with my insurance company, CareCentrix, and EdgePark in order to get a prescription filled, means nothing is automatic or efficient, and always requires countless phone calls and extra time.
 
Nobody is on the same page and whenever there's a problem, which is a lot - I get three different answers - and none of them are correct. 

How is any of this efficient for everyone involved? 

G told me that she wants to work with me, and together we could look into different mail order options for me. 
And I will  - but right now - I want to close the book on this chapter because I have to much shit to do. 


So while the test strip Rx mystery isn’t solved, my problem is... for now. Lets see what happens in September and December.

Tuesday, June 21, 2016

Dear Kitty: Thank-You, We Love You, And the Diabetes Online Community Will Miss You~


Rest in peace, Kitty~
Kitty Castellini was not only an amazing Diabetes Advocate, diabadass and a true original  - she was funny, smart and tougher than most and Kitty was "good people."  
She broke down barriers in her careers with the Laborors' Union of North America and Diabetes Living Today
 Kitty was the longest survivor of a pancreas only transplant - 13 years (since 2004,) and vowed to use her second chance to help people living with diabetes. 
She founded Diabetes Living Today and hosted a radio show of the same name, on 92.1 WVLT. 
 Kitty was honored by Congress for her work and commitment to diabetes, and was an early member of the Diabetes Online Community. 
An an amazing lady and one of our own, who was loved by many, including me. 
Her legacy is a strong one - she is part of our DOC history and we must continue to remember, honor,  learn and continue to be inspired  by her. 
Thank-you, Kitty. 
#######  
Dear Kitty - 
I want to thank you for fighting the good fight when it came to diabetes and living with diabetes. 
I want to thank you for your friendship, honesty, humor and tenacity. 
When you were given a second chance with your new pancreas, you decided to use your voice to help others living with diabetes and that’s exactly what you did, by creating a live radio show called Diabetes Living Today, devoted to helping people with diabetes live thier best lives. 
You became a voice for diabetes on-air and off and I know that all of us are grateful to you.

Kitty, you were known for always telling it like it was to everyone, no matter who they were or what they did. 
If you didn’t agree with someone, be it pharma, research or an individual, you’d make them know and you’d make them think.
You sit there in a conference and take it all in - scribbling notes and figuring out your next move - and then you'd stand up to speak and you'd set the room on fire.
You also had the ability to act as peacemaker when needed.
If you saw a disagreement between people who needed to work together, you would quietly take them aside individually and tell them to work together - and they would. 
Your zest for living proved to everyone who met you in person or on-line, that a person could indeed deal with monumental health challenges with grace, style, a strong will, and a wicked sense of humor. 
You were not only funny and kind - you were one smart cookie. 
Before your life in broadcasting, you were a freaking Explosives Expert! 
You had your Federal license in chemicals and explosives and you were considered an expert in Fine and Finished Grade, New Bridge Construction.
When you would tell people your background, you’d laugh out loud when they’d react in awe and say: Yep, I really am one tough bitch!

Kitty, thank-you for being my friend.
I remember the first time we talked on the phone after I read about you in a newspaper back in 2007. I’d just started diabetesaliciousness and I thought you were awesome. 
A mutual friend gave me your number and I called you right up.  
We ended up talked for over two hours. You shared with me the loss of your older sister to diabetes, and we discovered we had a lot in common. 
That was the first of many marathon phone conversations that always made me laugh. 
You bragged about your magnificent daughter and husband and proudly stated that you were a freak re: all things Disney related.
The very first Roche Conference in 2008
Kitty is in the front row, second from the right.
I remember sitting with your in the airport on our way to Orlando for the 2010 Roche Summit and laughing out loud as you pulled out a WaWa boloney, american cheese with mustard sandwich, on white bread and I thought you were crazy in the best way possible. 

I remember landing at the Orlando Airport and you telling our driver to “hold on and wait,” because you had to stop at the Disney Airport store and pickup a rare and hard to get, official Disney Dooney & Burke Disney handbag
You’d called the shop the day before to see if they had it, paid for it over the the phone and they were holding it for you. Our flight had been delayed by a few hours and all I wanted to do was get to the hotel - but you told me to relax and enjoy the moment. 
And that’s what I did. And I belly laughed out loud when you walked out with your perfect soap opera hair and fab new handbag in hand. 

I remember driving to Vineland,NJ to be a guest on your radio show and going to the The Outback Stake House with you for an early dinner - and I remember laughing at you because you went to town on your meal!  

Who could forget that day in Indianapolis that you, me and a bunch of other Diabetes went on a quest for a particular cupcake shop. A quest that was supposed to only be a few blocks away, but ended up being like two miles away - and it was 90+ degrees out, no breeze and crazy humidity. 
Our group found the cupcake shop and we ate them with gusto - in the air-conditioned shop and called for cabs to take us back to the hotel.
Before the quest for cupcakes in Indiana.
Kitty center, white shirt, second row from the bottom. 
I was always inspired and blown away by your resilience and kindness to others, including me - even when you were dealing with your own tremendous health issues. 
I remember after my mother died, you would call and check to see how I was doing and comforted me when I needed it most. 

During the many of the conferences we attended, you would have to go back to your room right after dinner and rest because that’s what your body required.
But first thing in the morning - you were a firecracker of diabetes advocacy and passion, advocating for others with a vengeance! 

Every time we talked on the phone it would be at least an hour conversation - and often much longer because you were a communicator. 

And as much as I thank you - I need to apologize to you as well. 

I should have called you more this year. We facebooked, emailed, and texted, but I should have called more than I did, and I apologize for that. 
One of the last times we spoke, you told me you were really sick and would call back because you were on your way to the hospital. 
That didn’t happen because you were not only “really sick,” you were incredibly ill. 
When you finally did come home, you were to weak to talk - and soon you were back in the hospital. 
I remember another time calling and and you telling me: I can’t talk, I’m too sick. 
And that would be when you began what was to be your final, long battle - your transplanted pancreas was failing and it was excruciating - you were truly fighting for your life. 

On Sunday evening, June 19th, you went to heaven, and the world has less spark because of your absence, 

And as much as I will miss you, I know that you are at peace and will continue to watch over your daughter Lauren and husband Gary, from above. 
I know you’re up there in the stars, spending time with your son and your sister. 
You’re with the people you love, dancing and eating a never ending bowl of Reese’s Butter Cups - your favorite, my mom’s favorite, and mine. 
And I’m keeping my fingers crossed that you, my mom, and my sister will get together and finally get a chance to meet up. 

Thank you Kitty - Thank you for everything. 
I’m going to miss you and I’m going to try and do right by your memory. 
Not only as an integral part of our history in the Diabetes Online Community, but as a friend.
And when I feel tired, I will remind myself how strong your will was, even when your body was not.
Lastly, I LOVE you, Kitty - and I hope with all my heart that you will find peace, laughter, and freedom amongst the stars - because now you are one of them. 
Xoxo, 
Kelly Kunik
#welovekitty #DOC4Kitty

Kitty’s obituary can be found HERE
And much like Kitty, it’s pretty damn impressive and contains links to two charities,
JDRF and the Cumberland Country S.P.C.A , who are accepting donations in memory of Kitty.  
Also, the following hashtags have been generated in honor of Kitty: #DOC4Kitty and #welovekitty  - use them with love and across all social media platforms. 

Tuesday, June 7, 2016

Because Sometimes I Don't.

I sat in the airport last night, sighed and whispered the word “fuck” as I gingerly dug through my knapsack, looking for my wrist brace.
I still have to wear the thing in public for the next few weeks - both as protection to the ligament and the incisions, and as a reminder not to lift anything over 12 ounces or bear any weight on my left wrist.while the ligament and tunnel in my wrist heal.

I’d worn my brace on Friday’s flight and I was glad I did.
My left arm had been jostled and bumped a few times via airplane dimensions and via the isle seat and a “too close for comfort,” encounter with the woman (Who I shall refer to  as Einstein,) in the seat in front of me. 
  1. Einstein came THIS close to dropping her overhead luggage on my head as we were getting ready to de-board - and completely ignored the fact that it had happened
  2. Einstein then decided to come to a quick/complete stop whilst dragging her carry-on behind her, talking on the phone, completely ignoring what was going. Thus causing a domino reaction involving everyone behind her who was trying to get off the plane, and resulting in me slamming my braced wrist and shoulder against the wall partition and the Captain asking me if I was OK 
  3. I was and Einstein was completely clueless to the mayhem she'd caused
  4. BUT I DIGRESS.
Anyway, last night I’d taken my brace off during the most ridiculously easy airport security check in the history of TSA Security checks and had forgot to put it back on. 

Four days with my family had been great and reinforced how much I loved and miss them. 
I was sad to be leaving, which only added to my annoyance as I continued to dig through my bag and whispered “fuck,” a second time. 
The woman sitting in the seat next to my knapsack looked up from her book, smiled and said: Are you OK? 
Me: Yes and I’m sorry for the colorful phrasing - I had surgery on my wrist and hand a few weeks ago and I forgot to put my brace on after the security check - now it’s at the bottom of my bag and I’m annoyed with myself... and I’m sad to leave my family. 

Turns out, she’d been visiting her twin brother and they’d celebrated their birthdays together for the first time in decades  - I’m thinking it was a milestone birthday - but I know better than to ask any woman her age. 
Anyway, we were both were pretty bummed to be leaving.
As we continued talking, she put her book in her bag, put her phone away and grabbed her boarding pass. 
And while she was doing that, I took out my glucose meter/lipstick bag, checked my blood sugar and wiped my hand with a napkin from my bag in under 10 seconds and what I thought was on the sly. 

Book Lady: Everything OK, with your blood sugar? Do you need me to get you anything? 
Me: Thanks, but I’m good. We’re going to board in a few and I wanted to check before we got on the plane. 
Book Lady: If you need me to get you anything or help you with your knapsack - let me know. 
Me: Thanks I really do appreciate it, and I absolutely will. 

And I know I could have used that moment as a springboard to talk more about diabetes - and I probably should have asked her if she had a connection to diabetes. 

But I didn’t. 

Maybe she had diabetes or a loved one with diabetes. 
Maybe she was a medical professional
Maybe she wanted to talk about diabetes or had a question about diabetes. 

Maybe she was just being kind. 

No matter the reason, I appreciated her kindness, but at that moment I didn’t want to talk about diabetes - which is weird, because like 98% of the time, that never happens. 
But sometimes I don't. 
A rare occasion for sure and I wasn’t quite sure as to why.

Instead, I smiled and started our conversation exactly where we’d left it, and I listened as she vividly described her and her brother’s birthday celebration.


 And I was happy that she was happy.
I still feel a little guilty, though.