Feeling Stressed During The Holidays? You Are Not Alone!

YAAASSS
Also: Pic via the interwebz

It’s the holidays - lots of running around, trying to finish up end of year work projects (speaking of - please check out my 3 part series covering the Diabetes Tech Meetings over at Ascensia,) getting our ducks in a row for the new year, while shopping, cooking, and figuring out all the holiday logistics. 

Diabetes - factors into our end of year craziness too. 

Cramming in last-minute doctors appointments, getting our end-of-year Rx’s filled - or at least trying too - many running into roadblocks when it comes to end of year durable medical equipment Rx approval and delivery - before January 1 and a new deductible rolls around - and trying not to lose our shit in the process.

Navigating the holiday carb party extravaganza, including explaining that “yes we can eat that,” because we have done a lot of work, including all the diabetes math, in order to have those Christmas Cookies/wine/and or whatever else is on our plate. 

Not to mention dealing with blood sugars in all dimensions because there are at least 42 different factors that impact our blood sugars. 

For some, the holidays bring up family dynamics that are complicated and anything but happy. 

Many others are feeling the tremendous loss of loved ones that only the holiday season can bring. 

For some this holiday season is the toughest part in the year of firsts without the person they love. For others, the loss and sadness pops up again … and just when they thought they were OK. 

If you’re feeling stressed, overwhelmed, or sad re: all of the above and or things not mentioned above - that’s OK. 

You are allowed to. 

You are doing your best. 

You are not alone. 

You are human. 

You are magnificent. 

My Hopes For Us In 2019

Free 2019 image via VectorStock

My Hopes For Us In 2019 

Lots of happiness and health - which of course is a given - and boatloads of tenacity to boot!

The ability and strength to pull ourselves up by our bootstraps and get back up whenever we fall - and the doggedness to try again until we succeed. 

Having more things to laugh out loud about and less things to cry about when it comes to our lives and our lives with diabetes. 

To continue becoming the person we truly are and were always meant to be - before self doubt crept in and veered us off path - and super power navigation skills accompanied by strong winds for our sails, to get us back on course. 

Strong inner strength to plow through all the crap that gets in our way on our path to becoming that person.

Being more successful than we were the previous year - and in all dimensions, while helping others to do the same. 

Having the strength to continue advocating for diabetes (and anything and everything else we are passionate about,) and to be the change that we wish to see. 

The ability to turn our self doubts into tools of self empowerment. 

Taking the lead with our diabetes more often than our diabetes takes the lead with us. 

To say yes to the things we fear and wish for!

For each of us to continue to grow and learn from our mistakes, while being grateful for the lessons learned. 

Politicians who grow spines and stop acting like spoiled brats - enough is enough and we deserve better! 

No pre-existing conditions clauses and health care insurance caps - EVER.

An end to sky rocketing health insurance costs including medications!

Speaking of life saving medications, lower insulin prices and #insullin4all become the reality and the norm in 2019, because people in the United States and around the globe shouldn’t have to die because they can’t afford insulin. 

Post Election Funk, Fear, Pulling Myself Up By My BootStraps & Forging Ahead

Because the past few weeks has been hard on our whole nation - but I'm forging ahead with a vengeance. 

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Post election funk is real and it's scary - it makes focusing hard- writing and blogging even harder. 

I’m scared about the future, my health insurance, the cost of being a person living with a chronic illness, and the ever growing division in our country. 

I know we’re not supposed to talk politics in the DOC - but I can’t explain why its been hard for me to be present in the DOC without mentioning our our presidential election. 

After the election many of us took a break from social media, television and the likes there of - including me - and as much as I hated to do it - I needed too. 

My heart and my head hurt and still do. I’m mad at how the election turned out for many reasons -as a woman, as a person with diabetes, living with a pre-existing condition, as an American who has always voted as an Independent and never straight down party lines, who has always done research on what and who I was voting for. 

I'm scared, angry, and frustrated that fake news is accepted as fact. 

I'm scared of the hate I see others express for those who are different  - and I want it to stop instead of it being encouraged. 

I'm angry that opposing parties demonize one another to the point it's now damaged and fractured our country. 

Instead of feeling empowered - the post election vibe made me feel powerless and scared - two words/feelings I despise. 

As a Diabetes Advocate I’ve learned to use my diabetes voice and become empowered in the process - and now I must take those same DA super powers and develop my voice as a citizen of the United States - and I am. I’ve always been one to reach out to my Reps in Congress and the Senate - and I’ve tripled my efforts now - and I strongly encourage you to do the same!

Financially and health wise, 2017 was the year I was going to sign up for the the Affordable Care Act - and I’m not so sure if I should now.

My current health insurance rates up again in March and my deductible is high. 

I’ve read that pre-existing conditions will be covered under in whatever the new administration replaces it with - but quite frankly, I won’t take their word for it. 

Now that the Thanksgiving holiday is behind us - I plan on taking the next week and researching ACA and will keep you posted on my findings. 

Speaking of the ACA, you/we can register our support for the ACA .

Paul Ryan's office is conducting a survey hoping to show a popular mandate to repeal the ACA - but the survey can also be used to register support for the ACA. 

It's automated and quick and here’s what you need to do:

1) Call (202) 225 -0600

2) Wait for awhile (1-2 min) for a recording to start 

3) You will get prompted by the survey
4) Press 2 to participate
5) Press 1 to register your support for the ACA

It only takes a couple minutes and it’s a sure way for our collective voices to be heard!

I’m also mad that the presidential election in the United States had such a negative and powerful impact on the International Diabetes Awareness month - and yet I totally understand it, because I experienced it and talked with others in the DOC who felt the same way. 

Another focus shifter occurred a few weeks ago (the day before election day,) when I scheduled surgery for my right wrist and pointer finger for December 13th. 

My right wrist and finger really hurt to the point of having to ice both daily. 

I’ve met my deductible for 2016 - now’s the time to get it done.

I’ve spent a lot of time (but not nearly enough,) prepping for the time I’ll be off and I wish it was over and done with. 

I spent the past week traveling to be with my family for Thanksgiving. 

For the first time ever, I drove solo and almost 700 miles each way, to spend time with my family - and it worked wonders for my heart and spirit. 

For the first time in what seemed like forever, I laughed until I cried... and I jammed with people who are just as "Kunikal -The_Musical" as I am!  

So as much as I want a “do-over” for the entire month of November - diabetes and politically speaking - I'm working my ass off to pull myself up by my bootstraps and forge ahead with a vengeance - it's really hard and some days are better than others. 

So thanks for your patience and understanding - it means the world to me. 

Speaking of thanks, for as little as $5 you can send a beautiful and straight from the heart thank-you to a loved one/loved ones who makes your life with diabetes easier - and you get to support the Diabetes Hands Foundation in the process! 

Click HERE to learn more.

Also, here's the thank-you that Mr. Mike Lawson sent me - it made my eyes leak in a really great way!  

Speaking of forging ahead, I have a new article up on Mango Health on Chronic Illness Burnout, so please give it a read by clicking, HERE.  

The topic is timely and it’s straight from my heart - and my beautifully busted pancreas~

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. 
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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.

#MypumpMychoice #AccessMatters: I Didn't Choose To Have A Preferred Relationship With Diabetes

By now everyone is talking about UnitedHealthCare and Medtronic’s partnership and the press release that states in part: 

“As part of our ongoing efforts to provide a better member experience, while increasing quality and lowering the overall cost of diabetes care in the United States, UnitedHealthcare has reached an agreement with Medtronic to become the preferred, in-network durable medical equipment (DME) provider of insulin pumps for UnitedHealthcare Community Plan and Commercial members, effective July 1, 2016”

UnitedHealthcare will continue to pay for pump coverage for others brands until those pumps are out of warranty - and once that happens, customers will either have to switch to Medtronic or pay out of pocket for the pump of their choice.

You can read the Press Release in its entirety, HERE, and I highly suggest you do because it's important, no matter which insulin pump you wear, or don't wear - or whether or not UnitedHealthCare is your insurer.

FTR and not surprising, UnitedHealthCare doesn't don’t provide a direct link. Scroll down to “Front and Center,” and click on the 5th bullet point where it says “Medtronic to become preferred DME Provider of Insulin Pumps for Diabetes, Effective July, 2016.” 

I currently wear an out of warranty Medtronic Pump. That’s my choice - and yes, my insurance has a coo-coo high deductible, only partial coverage once crazy high coo-coo deductible is met, and ridiculous amounts of paperwork and labs to prove that yes, “I actually do have diabetes and require a new insulin pump.” 
And all of which make it anything but easy for me to get a new pump - but at least I get to choose said new pump when I actually get one. 

Here's the thing: It’s not like I chose to have a “preferred relationship with diabetes,” over a perfectly functioning pancreas. I didn’t have a choice when I was diagnosed with t1 diabetes almost 4 decades ago, and ever since my choice to live sans D was taken away, having choices in my life has become of paramount importance. 

Choice when it comes to how I live my life. 

Choice when it comes to my body.

Choice when it comes to my diabetes and the tools and methods I use to manage my diabetes.

And slowly, my (and by “my”, I mean OURS - EVERY SINGLE PERSON LIVING WITH DIABETES,) diabetes choices are being compromised and whittled down and have been for years - and that’s bullshit. 

This isn’t just about insulin pump choice - a choice that is both intimate and personal, since we wear them almost 24X7. 

It’s about not having a choice in the future when it comes to CGM choices, Artificial Pancreas choices, insulin, meters and test strip choices - as well as choices regarding insulin pumps - and coverage (or the lack there of,) for all of the above.

This move reinforces the thinking that diabetes is a one size fits all, disease. 

Diabetes isn’t once size fits all disease. Different strokes for different folks, for a disease where 95% of the day to day treatment is in OUR HANDS.

#accessmatters, #patientsoverprofit, and #mypumpmychoice

 94 years ago, insulin hit the scene and saved millions of lives -imagine if we still only had access to one type of insulin? 

Crazy, dangerous and unacceptable - to be perfectly frank, we’d be F^cked. 

Same goes for insulin pumps. 

I won’t demonize Medtronic - I have friends who work there with families and mortgages. 

Medtronic as an insulin pump has worked well for me since 2002. 
And my mother was one of the first people on the east coast to have an implantable defibrillator in 1991 - it gave my family an additional 20 years with my amazing mom and I will always be grateful.  

I don't find Medtronic pumps to be an inferior product, nor do I find insulin pumps made by other companies besides Medtronic to be inferior. 

But I won’t ignore the fact that this move is disturbing, sets precedents that don’t benefit patients, and has ramifications  that will adversely effect every PWD for years to come.

As a person with diabetes, I already know Pharma sees me as many things. 

As an Opinion and Thought Leader, a tool to communicate to the masses, and as a dollar sign.

And I'll cop to being all of the above. This dollar sign has a voice - And I’m not afraid to share my thoughts on what I believe is right…. and what I believe is wrong. 

This move is wrong and it hurts a lot of people on both sides. 

I’m asking both Medtronic and UnitedHealthCare to reconsider. 

I’m asking you to use your voice regarding this decision because your voice is so damn important. 

Together, the Diabetes Online Community moves mountains. Alone, we trudge up hills. 

LETS MOVE THS MOUNTAIN.

2015 DiabetesMine Innovation Summit

Today, along with other fantastical Diabetes Patient Advocates, I have the honor of attending the DiabetesMine Innovation Summit being held at Stanford University's Medical School, at the Li Ka Shing Conference Center. 
The DiabetesMine Innovation Summit is a “Diabetes Think Tank” consisting of patients; Pharma, inventors, investors, HCP, manufacturers and payers sdiscuss diabetes innovation in all dimensions. 

I’m beyond thrilled to be attending the summit and I’m incredibly grateful to DiabetesMine for once again spearheading this yearly event and for choosing me as one of the 2015 Patient Voices Scholarship winners. 

Do you want to join in and watch the Diabetes Mine Innovation Summit conversation unfold online? 
Go for it! Jump on the twitter and follow the hashtag:  #DBMineSummit.

FTR: My travel, lodging, and some meals are paid for by the scholarship offered by DiabetesMine, but all thoughts are mind and mine alone.

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! 

Diabetes Math, Battling Insurance Companies, Dead-Spots & Zombie Infusion Sites....

I always put off changing an infusion set that’s less than 48 hours old - not because I’m lazy, but because of insurance coverage re: my supplies and the lack there of. 
And it drives me crazy. 
In a perfect world, 1 box containing 10 infusion sets  = 1 infusion set every 3 days, which = a 30 day month supply. 
In a perfect world, 3 boxes of infusion sites = a 90 day supply.
But that’s not how any of this works in real life because life isn’t perfect, and life with diabetes is anything but - even when you do everything right - which is pretty damn impossible, diabetes or not. Yep, four boxes of infusion sites every three months gives us a little relief and a little wiggle room and are the keys to our mental and physical health.   
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As I stated above, I almost always hold off changing a less than 48 hour old infusion site when it’s obviously having issues syphoning insulin. 

I don’t want to run out of infusion sites. I don’t have to fight to get more infusion sites from my pump company and I don’t want to have to pay for them. 

But I do. 

I don’t want to battle with my insurance company to cover 4 boxes every three months because my insurance company is all about the math. 
1 box containing 10 infusion sets  = 1 infusion set every 3 days, which = a 30 day month supply. 
In a perfect world, 3 boxes of infusion sites = a 90 day supply.
But in my imperfect diabetes world, four boxes of infusions sites every three months keeps me covered when it comes to real life infusion site occurrences.
Things like:
Skin sensitivity  
Dead spots 
Zombie infusion sites
(Zombie infusions kinda, sorta syphon in the insulin, but not so much. Zombie infusion sites  have you running blood sugars in the 150 to 180 range and require more insulin. And when you do change the site, your numbers go back to normal.)  
Doorknobs 
SPANX killing off a new infusion site within 20 hours of wearing said SPANX 
Yoga pants yanking out infusion sites 
Bungie pumping, pumps that falter and rip your site 
Leg sites that only last 30 beautiful and perfect hours before they crap out for good because leg sites get more action than abdomen sites 
Abdomen infusion sites that are precariously close to pant buttons and jean rivets
Infusion site adhesive that unsticks, ASAP and for no reason at all  
Abdomen infusion sites that inadvertently getting rubbed by handbags and losing their magic sucking in the insulin, power.

I (and by I, of course I mean WE,) shouldn’t have to risk extended damaging our valuable real-estate or elevated blood sugars because of all of the above. 

Nor should we have to choose the lessor of two evils - Using more insulin and risk running out before our insulin Rx can be refilled, or risk running of infusions sites before that RX can be refilled.
So while I don't want to fight for my fourth box of infusion sites,
I ABSOLUTELY DO FIGHT FOR MY FOURTH BOX OF INFUSION SITES - because I absolutely need them. 
I've gone so far as to email my insurance company pictures of what an infusion site actually is, where it goes and what it does, because the people who are doing the denying, have absolutely no clue. 
Why am I writing this post? Because after 3 days of infusion site bliss and lovely numbers, I put in a new infusion site Saturday night, which ended up being placed directly in a dead-spot and had to change it out 2.5 hours later. 
That second site was a zombie site, but it took me until Monday morning to change it because I didn't want to admit it was another site issue - I didn't want to deal with the diabetes math and I was really, truly hoping it was just me requiring extra insulin instead of another site issue. 
And now I'm sharing because I'm thinking that some of you might be able to relate.

Dear Health Insurance Companies: I Wish For A Lot - And I Demand Even More.

This post was based on a recent conversation I had with friend. We can wish all we want, but we also have "to do." We gotta make the listen. We must demand, we must "do," and we must become the change we want - In our lives and our lives with diabetes~
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Dear Health Insurance Companies: 
I wish I knew what my diabetes required tomorrow - I really, truly do, because it would make my life so much easier in so many ways. 
I wish I had a crystal ball that would accurately tell me exactly how much insulin my body will need, 30 days, 90 days and 365 days a year down to 1/5 unit - but I don’t know, because my diabetes requirements are never the same from one day to the next.
That doesn’t make me non-compliant - that makes me a person living with diabetes - And in my case, type 1 diabetes.

I wish I knew exactly how many times I MUST test my blood sugar everyday for the next 365 days. In my head I'm envisioning a magical 2015 calendar for me to that details and breaks down all my glucose numbers advance, including the whys and hows. 
How many low blood sugars; high blood sugars, sick days, exercise days, stress filled days and everything in between.
Now lets take that magical and mystical calendar a step further so that it can accurately predict in advance and breakdown my daily/weekly/room glucose tests for (and error messages,) including and the approximate date those days will occur, for ever single calendar year. 
That would be GREAT - Then I could give you those numbers well advance!
But magical calendars don't exist and that's now how diabetes works.

EVERY day is different. 

And I’d love to know in advance an approximate number of "error messages" that will flash on my meter/sensor screen in the next 12 months so we can hash out it out accordingly and before hand re: supplies and durable medical equipment coverage.
I wish with all my heart (and infusion site real estate,) that I could properly predict if infusion site will actually subcutaneously suck in all the insulin my body requires, before I stick the 1 inch steel needle - before I waste a precious infusion site on a dead-spot that I cannot reuse.

I wish I had an endless supply of money and time when it comes my diabetes supplies, wants verses needs. 
It's frightening and maddening all rolled into one that the people who decide what diabetes supplies will or won’t be covered, and have, for the most part - no understanding of what an infusion site does or doesn’t do, and that a 90 day supply is anything but, when it comes to doorknobs, dead spots, and margins for error. 

And that a person's one month's supply of insulin requirements  does indeed change, daily and monthly, because our diabetes requirements change every day. 
It's infuriating that there's no wiggle room at all when it comes to how much insulin insurance companies will actually pay for on a monthly basis - don't even get me started on covering only 50% of the cost of my monthly insulin because insulin is only available for purchases as a name brand instead of generic! 
Insulin's also the only medication, name brand or otherwise that keeps me alive!

I wish health insurance companies would take into consideration that every damn day my body and my diabetes requires different amounts of insulin  - just like those with fully functioning pancreases. 
I wish insurance company would take into consideration that at least 22 things on a daily basis contribute to my blood sugars - things like, but not limited to; stress, illness, exercise, caffeine, my period, and everything else in between. 
That for just one day, the folks at my insurance company could experience what a roller-coaster of blood sugar feels like and requires.Pricking their fingers, counting carbs and injecting incessantly in order to get handle on a ride that no one wants to go on. 
I wish they would realize that Murphy’s Law applies to people with diabetes, a.k.a., the magnet like attraction of tile floors to insulin vials - and usually a few days before we are able to renew are prescription without paying dearly.

I wish health insurance companies would not only understand & acknowledge the mental side of living with a chronic illness, as well as the physical and medical requirements - but would cover the mental and the physical without having to fight.

I wish that the people who implement changes re: my healthcare and yours, and who have the power to approve/deny our diabetes medications and technology, would not only understood and acknowledge that managing diabetes and every chronic illness is difficult; never ending and constant, but would actually approve those medicines and technologies that allow us to maintain our physical and mental health. 

I can wish all I want, but I'm down with wishing - I'm tired of wishing. I'm all about demanding and doing. So are all the Diabetes/Patient Advocates who pay your premiums.

WE won't stop advocating for our rights and our coverage and we won’t stop demanding- because our very health and wellbeing requires that we do. 
We will continue to use our collective powers - Our voices, posts/vlogs, our tenacity, the power of Social Media online and in real life to empower others and make changes. 

Being patients has taught us it's to never give up; to speak up, to listen and learn from one another and work together - because our current and future health depends on it. 

Sincerely, 
Kelly Kunik

PWD, Diabetes Advocate

Diabetes /SmartPhones : Change & Being Brave Can Be A Bitch. It Can Also Be Totally Bitchin!

So I was smack dab in the middle of finishing my, “Bitch of a Low, The Aftermath,” post (which I will publish tomorrow in its entirety,) when Chester, the wonderful CS Senior Apple Rep called me today - And an 1.5 hours earlier than he said he would. 

Some Back Story: I FINALLY ordered a new iPhone 6+ in September. 

It was time, I was walking around with a 3g that was on its last legs & was finicky to say the least. 

But the reason I held on to my 3G for so long was simple. I had voicemails from my mom on that phone that I couldn’t handle hearing. But didn’t want to lose them either. 
And nobody at Apple or AT&T could tell me if they would safely transfer to a new phone, so I held on tightly to the old phone and technology until I could deal with those voicemails properly.  

Last month I ordered my new 6+ and thought I had 4 to 6 weeks to deal with those voicemails. I didn't. My phone arrived last Friday, 27 days early. 

So I listened and recorded the messages on Sunday afternoon and cried like a baby. 

But I know how lucky am to have them and I was glad that they were backed up, safe and sound. 

I was really glad that I conquered my fear of hearing those messages and I was ready to move on and move forward, so I backed up my old 3G so I could activate my new 6+. 

And that would be when the shit hit fan and I ran into all sorts of problems with software upgrades, compatibility - EVERYTHING.

3.5 hours on the phone with Apple Support, 3 different case numbers & 3 different CS Reps later, I was told by the super nice/ smart Senior CS Agent Chester, that due to the software incompatibility, my "Contacts" list wouldn’t transfer. 
BUT, if wanted to take the time and manually input my "Contacts" info over to my "Gmail Contacts" list, we could save & transfer them that way.

And that would be the point when I burst into tears and totally lost it. 
Also: I may have uttered a few choice and colorful phrases, but will neither confirm or deny. 

Chester, well Chester was just wonderful and we agreed to reconnect on Wednesday (today,) so I could accomplish what I need to do on my end. 
And true to Chester’s words, he called, we transferred the Gmail Contacts lists, apps, etc., and then Ches connected me with Joshua at At&T who was wonderful and completed the activation process. 

Now I’m good to go. 

So why am I even blogging about this? 

Good question. 
I'm writing about this because after all the stress and false stops/starts with my iPhone 6+, the thing that kept coming to mind was how much it reminded me of the anxiety when it comes purchasing and or embracing new diabetes treatments and technologies.  

As much as we want, need and deserve the latest and greatest in diabetes treatments and technologies, many of us form attachments to what we already know and fear what we don't. 

For those of you who switched from shots to an insulin pump, how long did you marinate on making the switch before you actually made decided to go for it? 

How many of you have switched up your D technology and insulin brands without any fear of the unknown? And how many have hesitated because you feared change? 

 Also, (and this is HUGE,) how many PWDs out there put off better D treatments and technologies because they CRINGE at thought of dealing with CS Reps and insurance companies throwing continual wrenches in our roads to better? 

How many of us have experienced pump purchase anxiety and the fear that a 4 year commitment means missing the latest and greatest that may or may not come down the pike? 

How many of us hesitate, if even for a moment, because we don't want to deal with all of the above? 

Finding out what works for us as individuals and individuals living with diabetes is a wonderful thing. So is having faith in ourselves and in the choices we make. 

Being brave, making that initial leap and embracing the unknown can be a real bitch at first, but it can also be totally bitchin ~

And I need need to focus on the "TOTALLY BITCHIN," part more in my life... and my life with diabetes~ 

Insulin Pump Supplies & Insurance Companies: Short Changed In Translation~

 This post re: Insulin pump supplies and health insurance B.S. is a bit long, but I think it's important & I hope you do too~

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At the end of December and after a string of iffy (and by iffy I’m talking about the sticky part not being so sticking) infusion sets, I called up Medtronic’s Customer Service, told them the issues I was having and provided them with infusion set box lot number.  Medtronic listened to my complaints, sympathized with them and after a series of questions regarding the LOT & REF numbers and infusion set insertion, rectified the situation IMMEDIATELY by sending me a box of replacement infusion sets, free of charge.

1. I understand that things happen sometimes in life and with supplies - I totally get it. 
2. I really appreciated the fact that Medtronic CS listened to my issues & analyzed the problem and sent me out a new box of supplies.
3. The new box of infusion sets worked like a charm. 

Sidebar: Regardless of your pump brand/CGM/test strip/insulin brand, if you’re having issues with anything - you need to let the company know what’s going on. They can’t help you if you don’t pick up the phone. Also, they want to document any issues their customers are having & fix the problem, ASAP.
If you don't tell them you're having issues, how are they going to know and then fix said issues? 

In mid January I received my tri monthly order of pump supplies from Medtronic.
I cracked open the box and instead of emptying it out like I normally would, I decided to get all organized ( my friend Susan Weiner would be proud), took out the bubble wrap and placed the opened box of replacement infusion sets from December in the box, along with 2 extra boxes of insulin reservoirs a friend had given me after she decided to go on a pump vacation. 

My pump supplies were all organized and I felt good.
Every few days I’d reach in the box and grab a new infusion site and reservoir - Easy peesy.
Two weeks ago I had my CDE fax my RX to medtronic because my new RX had been due mid May. 
Cut early last week when I noticed that I was REALLY low on infusion sites - And by low I mean less then 10 infusion sites remained - even after going through all my hand bags and retrieving the spare infusion set I make a habit of keeping in each. 
And I was like: WOW, this is REALLY weird. 
Thursday afternoon I called Medtronic to see when my pump supplies were being shipped and found out several things.

1. My supply ship date is 6/25/14 
2. As of January 1, my insurance company no longer covers four boxes each of infusion sets and reservoirs, only three boxes of each - And now require me to pay a copay for each order. 
3. Apparently, many insurance companies are being "stricter" regarding what a three month diabetes supply actually consists of across the board. So even though I now have a lower monthly premium and the cost of PT or chiropractor visits have been reduced by $5, I have much higher DME copays and deductible - And the number of supplies I receive has been cut by a quarter. 

I didn't actually realized the change in my shipment amount because I didn’t actually empty the box of supplies that I received back in January.

Did I freak? Yep, I did - And I asked to speak with a CS Manager.
To Medtronic’s credit, a CS Manager called me back that afternoon, but of course I missed the call. The CS Manager was diligent and after not hearing from me on Thursday, she called me back on Friday morning and was very helpful. More on that later.

My next call was to my Health Insurance company's Complaint’s & Appeals Analyst (there’s been so many issues w/my insurance that I’m actually in possession of a C & A ‘s direct number and you know I use it), and we talked for 20 minutes. 
I attempted to explain why a 3 month supply of insulin pump infusion sets should indeed contain 4 boxes (same goes for reservoirs,) like I’ve been receiving every three months for the past 11 years, and not the three boxes they recently decided was enough.

I stated that shortening my order was going to cost us both extra money in the form of Lantus and needles. And then I did the math and broke down how 3 boxes of infusion sets didn’t equal a three month supply - And Explained  how the 3-day infusion set rule isn't a given for a multitude of reasons and that wiggle room is need for very important and real reasons. 
Reasons like: Sometimes the sticky part doesn’t stay stuck, how and why scar tissue develops and doesn’t rear it’s ugly head until a couple hours after the infusion site’s in place and resulting in us having to start from scratch with a new infusion site and set. 
I gave her the play-by-play of how doorknobs reek havoc with tubing and the idiosyncrasies of thigh infusion sites.  
I pointed out how SPANKS can not only assist in flattening your belly, but have the ability to kill a brand new and otherwise perfectly good infusion site in less than 6 hours. 
I pointed out that during the summer, many who wear insulin pumps only fill their reservoirs half full because during a heatwave the insulin in the pump can go bad & that it's more cost effective to throw out a reservoir that's less than 1/2 full then tossing 3/4 full one in the trash. 

The C&A knew what an insulin pump was, but she had absolutely no idea how it worked or  all that accompanied actually wearing one - And she was floored. She promised to reach out to Horizon’s Pharmacy Rep and get back to me. 
After our conversation I decided visuals were in order so I emailed her pictures of my current insulin pump infusion belly site and what an insulin reservoir looks inside the pump and next to the pump. 

Photo 1 - Showing exactly what an infusion set site looks like. including tubing & reservoir 

Showing what an insulin pump reservoir looks like next to the pumpSidebar: I'm not a fan of sending pictures of my belly to anyone &THANK GOD I was working out of the house last Thursday & Friday because it was time consuming and I worked until 7pm each night to make up the time.

The C&A called me back on Friday morning to give me an update re: claims that Horizon had finally paid from 2013 (don't even get me started,) and then I asked if she’d received my emails. 

C&A: YES, They actually really helped,  they helped me to understand what you meant when you explained what the supplies did and how they work. I’ve forwarded them to the Pharmacy Rep and hopefully I will have an answer for you soon. 

Like I mentioned previously in this post, Medtronic’s CS Manager called me back on Friday  - And she was great. I explained the situation and how I wouldn’t have enough infusion sets to last me until June 25th. 

I mentioned having to go back on shots and how Lantus had a wicked tail and that I was playing phone tag with my health insurance company to fix the situation and had placed a call into my CDE

The Medtronic CS Manager told me that she’d send me out some infusion sets to help me make it through the week and they would arrive Monday morning. 

And they arrived Monday morning just like she said they would.

So now I wait and keep my fingers crossed. And even though I now have extra backups, I'm being careful with my remaining  infusion sets. 

Here's the thing: I shouldn't have to. 

Yesterday I was running in the mid 180’s all day and I knew it was because of my infusion set. I finally changed it out last night before dinner - And I didn't want to. 

I shouldn’t have to wait, nor should I have to compromise when it comes to my health - both long term and short for fear of running out of supplies. Non of us should. All of our lives and quality of life with diabetes depend on maintaining good numbers - And  personally, I pay a lot for my health insurance in order to do that. 

I don’t understand how insurance companies, who don’t actually understand how pumps and infusion sets/reservoirs work, have the power to determine what three months worth of insulin pump supplies actually consists of. I don't understand why we have to fight for everything when it comes to insurance - But I  know I won't stop fighting when it comes to my health, or yours. 

So have you encountered issues with what your health insurance will and won't cover since January 1, 2014 and if so, how are you dealing with it?