I want to preface this blog by stating it is not a slam at providers or vendors, but I do want to illustrate how ineffective our healthcare system has become.  Too many rules, too many silos, and insurance companies really dictate care more than providers.  It is upside down.  It is not for the faint of heart and is a major barrier to wellness.  It’s time for something new.  I shared my journey on my social media sites and am recapping the story here.

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The backstory

I have had Type 1 Diabetes for more than 30 years and on an insulin pump for over 20.  I’m an RN.  I know the system.  I needed a new insulin pump and I wanted the large out-of-pocket cost to apply to my deductible, so I waited until Jan 1, 2022 to start the process.  

I booked an appointment with a wonderful Family Practice Nurse Practitioner in February (Thanks Heather!).  I really just need the prescriptions and order for a pump.  I have been adjusting my own settings for decades and the pump reps are really the experts when you need to make changes or have questions. She was willing to do this for me, but upon review by the physician that oversaw the practice, it was determined that they weren’t comfortable with me taking care of myself.  I needed to see an endo.

To the portal I go to find an endo that is on the plan.  Turns out all the “good ones” don’t take the ACA plan I am on. I know the “good ones” because the T1D community is pretty tight and we share a LOT of information.  So my next option, is who can see me the soonest.    The soonest new patient appointment I could get was 6 weeks later.  I was going on a hope and a prayer that my very old insulin pump would hang on.  My saga began here.

The March Endo visit

March 22nd post:  “One of the most frustrating aspects of living with #diabetes is jumping through all the hoops required by insurance. I  loved my previous provider, but they don’t take my new plan.  I am no longer on a family plan since I got divorced and insurance options for a single person with T1D are limited. 

So this is the doc I will have to use.   TBH, it sucks!   Still, I remember, that I get to choose.  Even though it’s a pain, I get to come here.  I get to tell my story and convince this new provider that I know what I am doing.  It is the door I must walk through to get a new pump (my current one is out of warranty). 

So I will choose to be kind, to play the game, to negotiate for what I need, and to walk out that door in an hour with a provider who had the opportunity to hear me, I will have listened to them, and a prescription for a new pump and CGM. And then I get back to living my life, grateful for the juice and technology that keeps me going!”

Afterthought: The visit was brief and he promised to send off orders to Omnipod right away.  My biggest curiosity was that he didn’t even ask about my pump settings.  They didn’t have the software to connect to my pump, so they just skipped it.  I (wrongly) assumed the order would read “continue previous pump settings”.

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Time for something new!

April 5th post:   After more than 20 years attached to tubing and an insulin pump, I am switching up my game.  Join me as I share my experience and tips and tricks for integrating a new system into my life.  Lesson 1 – You don’t always get what you want.  I was hopeful to get a closed-loop system of Omnipod and Dexcom.   I see so much endorsement in the #diabetescommunity for this setup.  But my insurance doesn’t cover it. 

So, I will take this first step and get a new pump.  When I began my own business I had a very limited insurance plan that didn’t cover pumps, so I have been using old pumps and finding supplies online.  Is that the “best practice”?  Nope.  But sometimes we take calculated steps off the beaten path in pursuit of our dreams.  #Noregrets.   Instead of being frustrated, that I didn’t get “first-class”, I will enjoy that I am still on this journey and it’s a step in the right direction.  “Business class” will do nicely……for now.  

So far the process has required a few inconveniences:

• new endo that is on plan
• leaving my doc that was working so well and knew me
• a few calls and emails and phone tag to get the pump prescription and connect with the pump company. (I was VERY prepared for this based on past experience).

So this email saying I am covered was a pleasant arrival in my inbox.   Next step – waiting for them to call me back and finding out how much $$$$.  Patience has been a gift!! And it’s empowering when I get to decide to be patient!

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Well maybe not yet

April 6th post:  So the email yesterday that I was approved was apparently auto-generated. Spoke to the #omnipod rep (very nice BTW) and they said they don’t have a prescription nor insurance verification on file.  And my stated “copay” of $531 was like not what I will pay – Thank God!!

So back to the portal to leave a message and call the rep to see what’s up.   BTW – this is the first time I have spoken to a human besides my initial doctor visit.   Very different from my initial pump process 20 years ago.   I love tech and it’s efficient, but I couldn’t imagine if this was my first go-round how challenging this would be. 

So TBH – I thought I had already provided my insurance and I thought my doctor had sent in the Rx when they contacted the Pump rep.  I will jump through this hoop again.  Word of the day…..diligence.   Just keep going.   Just keep going. 

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So many questions

April 7th post:   Changed my pump site yesterday and had so many questions.

• when will I actually get my new pump?
• will the supplies I have left last (or do I order another box of each for ~ $200)
• was that really my last site change for my good ole Medtronic 530g ?? (Yes it’s THAT old – long story)
• what will this new system cost per month?
• is there a meter that can send my glucose readings to my new pump?

I have learned that getting some insight into change is one way to calm your inner bitch (yes I have one of those!) and keep a sense of safety/control around this process.  I connected with my  #omnipod rep this week.  Hailey is amazing and refreshingly candid!  I really felt listened to and like a partner, not a patient. Here’s what she told me.

• had an employee quit which caused a backlog of paperwork – hence the delay in getting my prescription.  (People leave – it happens)
• new ordering process sent me the wrong email (all software has bugs – worked in the industry long enough to know)
• there are no meters that sync to Omnipod – just Dexcom (for which my insurance doesn’t cover – but TBH I’m still a bit unsure of TWO things stuck in me.   They blame it on the difficult FDA approval process – I gotta call BS.  If a company can make an insulin pump and get it FDA approved, transmitting a datapoint via Bluetooth is a cakewalk    It’s readily available with other devices.  Personally, I think there is no revenue since glucose meters are cheap.  That’s my Product Management hat I am wearing – not a person with diabetes)
• I’ll get the pump about 3 business days after they get the order. (No way to know how responsive my brand new doc is.  Probably should call.   Also wondering if I should spend the $200 on more supplies for my old pump?)
• trainer is local and we can train on zoom call (brilliant – much more efficient!!)
• free upgrades when the new version comes out with new features (winner!!)

Coaching skill for the day – My 5th Step of the Program: Communication.    We have to connect, listen, ask, share and be curious.   Communication is a skill and we all can learn to be better at it!

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Listen to your inner voice

April 11th post:   In my last post, I mentioned that I probably should call my doctor to make sure he sent in the paper for the new pump.   But, I reasoned “He’s an endo, a diabetes specialist.  He does this all the time.  Trust the process.  Don’t be THAT patient.  He told you at your appointment he would take care of it.”

I should have trusted my gut – still no paperwork and the pump process has no forward momentum.   My first visit with this doc was on March 22.   I had to switch because my old doc wasn’t on this plan.  The paperwork shouldn’t take THAT long. 

BTW – being a single T1D leaves you very few insurance options.  Ugh.

So I am reminding myself “Be THAT patient”.  Do whatever you need to take care of yourself  AND be as kind as you can in the process. It will happen at some point and I am not going to give up an ounce of my day with frustration or worry.    Just lots of deep breaths and letting go.

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Making Progress

April 13th post:   Communication breakdown is a HUGE source of #medicalerrors.  I am not sure this would qualify as a med error in my hospital days, but miscommunication and misunderstanding certainly led to a delay in treatment – about 3 weeks.    It appears as if only part of the info was not sent – just not the prescription. 

Who’s at fault is irrelevant to me.   It won’t make my life better to chase that down or blame anyone. But it illustrates how much we need to advocate for ourselves! 

As I have said many, many times – the game of diabetes isn’t one of perfection (perfect blood sugars, A1c, or “home runs”).  But a methodical and persistent dedication to making it work each day and not beating yourself up for the “swing and a miss”.    We keep swinging and find gratitude that we woke up today and get to play again! 

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Some days are hard

April 14th post: Some days you have to surrender and take care of yourself first.   Yesterday day was a roller coaster on so many levels

• I think I under-bolused for a meal and soared over 350.
• Used the same correction factor I always do and hit the 40s – twice 
• Found out my #omnipod controller has shipped and it’s free (eta tomorrow!!)
• But the pods come from somewhere else?  Somehow I “used the portal” and agreed to this.  But the only thing I filled out were the links that were sent to me? 
• So no idea what pods will cost, if the vendor is in-network,  when they will arrive, or how to connect with whoever is sending them. 
• The best answer I got was that “I used the portal”. Whose?  When? Where? 

And then I “benched myself”.  Decided to let it go until later.  Sat on the patio – meditated – read a book – enjoyed the sunshine – hydrated – let my body stabilize.   The stress doesn’t help my blood sugar.  

Today is a new day – and I will try again.  The first step – search the history on my browser for the mysterious portal.  Next up – track down the pods.  Oh and buy some flowers to plant!! They make me happy and boost my spirit! 

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Some patient care lessons never change

April 15th post:  While working as a bedside nurse we had a saying “treat the patient not the machine”, which meant if a patient’s heart monitor was flatlined, but the person was awake and talking – don’t start CPR!     The same applies to healthcare communication when working with vendors and other health providers.   What’s in the computer is not always the truth.   Hence my delay in getting my #omnipoddash.  After several days and hours of texts, this is what went down:

• My new doc sent paperwork on 3/25 via fax and email to the Omnipod folks
• Didn’t hear anything, called the doc again and got the Omnipod rep’s number on 4/1.  Connected with her and she texted me and got my email.  Sent me a link to fill out my patient information.
• Apparently, that link set technical wheels in motion with a third party Express Scripts which it turns out I used in 2017
• Chaos, confusion, and delays ensued because what the computer said didn’t match what I said. 
• Apparently, the computer had more clout than me
• Clarity was achieved today after 3 hours of calls with my insurance, ExpressScripts, OptumRx, and Omnipod folks. 

The controller arrived today.  Pods are being overnighted.  I have 94 units left in my old pump.   Whew.   Persistence for the win!!

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Advocate for yourself!

April 20th post:   Some days you have to disagree and advocate for what you know is right.   Today marks 4 weeks since my appt with my new endo.  Had to change because of insurance.  He was the first available and I need a new pump – STAT!  My current pump is O.L.D.  (Maybe 4 generations back).  That was the reason for my visit – a new pump ordered by an in-network provider.  Doc said he would get me hooked up with #omnipod rep.   Yea!!

• 2 weeks to get paperwork sent
• another week to get the prescription sent
• Now I have a new pump in hand, but the doc didn’t send orders for settings.

During my visit, he did not look at my pump or settings, did not ask for any glucose logs, and didn’t ask about carb to insulin ratio, total daily dose.  Nothing. 

I call and ask if we can just use my current settings.  His nurse explains to me that he is the doctor and knows how to determine settings from my chart. Very snippy and dismissive. All he has is a fingerstick and my A1c.    Why wasn’t this all sent at one time 4 weeks ago?  It can’t be a surprise that all this is needed…. I sent my current pump settings via the portal and “suggest” we try them.

Meanwhile, my trainer and I are still awaiting orders……  Let them send over what they want, I will adjust to what I know works.   The lesson – advocate for yourself – don’t get frustrated – ask for what you need, the way your life works. One size does not fit all.

No disrespect to my care provider brothers and sisters – but a provider worth their salt understands each person is unique. I will go along with the process because I need this technology. Luckily, pump settings were made to be changed!   Note to self – get pump situated, find a new endo.  I have that choice.

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Make it happen and enjoy it when it does!

April 21st post: Today was the day!!!! Huge shout out to my trainer Kristin from #Omnipod!!    As soon as we got the orders today after I messaged again! (finally almost 1 month after my endo visit), she had me trained and “podded” in just a few hours.  She knows her stuff!!!

My observations:

• I feel a bit unplugged without tubing – just newness, I’ll get used to it.
• The insert is so much easier than my Silhouette needle.  Easier to push a screen than stab yourself with a needle.
• The user interface of the PDA is super easy to navigate.  I “see” so much more now.  I anticipate this new window to my diabetes, will have a positive impact.  Knowledge is power!!
• All the printed info is great, but I am a “see one, do one” learner. 
• My provider made this much harder than necessary.  We knew a month ago what info you need to set up a pump. Why drag it out? 
• I can’t decide what to do with my old pump.   It has been with me for a LONG time.   Christmas ornament maybe??

My insurance kicked on Jan 1.  New PCP with referral to a new endo.  No appointments were readily available.  Tech. Communication.  Insurance. Expectation.  Old pump about to die.    Lots to navigate, but not letting the chaos get to you is key.  

I wanted to document this just to highlight the challenges.  And I feel like I am well equipped.   I know most people don’t have my background and training.  No wonder diabetes in the US is so hard to manage!

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You must learn to navigate change to manage diabetes

May 5th post: Today’s lesson – dealing with change.   Getting an updated pump was a HUGE relief! Box checked!   

But now comes the reality of change, so I thought I’d share a few insights.

• I constantly feel like something is missing.  23 years of having a tubed pump dangling from me – its absence can feel alarming.  (Not complaining!)
• I feel guilty tossing away technology every 3 days.   Again – years of protecting that pump with my life don’t just vanish.
• Keeping the PDM charged and with me is a new habit that isn’t fully integrated.  . No PDM = No Bolus.  I’m still a work in progress. 
• I miss that my old meter synced with my old pump. A few more steps to add that info. 
• Still freaks me out to get in the shower/bath with my pump on.    I feel like I am cheating or breaking the rules!
• Remorse at the amount of insulin I throw away.   . I am still trying to get the least amount loaded so it runs out when it’s time to change. (I might have even tried to extract it from the old pod)

All this newness can be anxiety-producing.  Worry.  Fear. Guilt. Regret.  Failure.   It can be, but it doesn’t have to be!   Even though anxiety happens (we really can’t stop our nervous system), I have learned not to get hijacked by it.  It’s a skill anyone can learn, just takes some time and intention. But, OMG, it’s so worth it.   Cause change is always gonna happen. 

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Well, thanks for hanging in there and reading my tale!   Nearly one month has passed since I inserted my first pod and a routine has begun to settle in.  It always does, doesn’t it?   After a while, the newness wears off.  The strange becomes normal.  The worry fades into the background (yet always close at hand).   Have there been some challenges and setbacks?  Absolutely!  But having the skills to navigate the chaos is what gets you through.

It’s a simple little thing called mindfulness and empowerment.  Yet it’s never taught in the doctor’s office, but ABSOLUTELY imperative to manage diabetes.  That’s what I do and why I do it.  I get how important it is to be a human and not a disease.  I want to help others to find peace and possibility in the sea of diabetes distress.

Be Well,