Friday, May 19, 2017

Diabetes Blog Week Day 5: More Than Diabetes

Today is the last day of Diabetes Blog Week, ending with a great prompt: More than Diabetes
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

I am having a bit of confusion with how I identify myself these days.  I am many things, but I am all of those things along with having diabetes.  

As I sit here contemplating what to share, I'll start with travel.   I have always loved to explore new places both near and far.  Some of my favorites have been  Italy, Australia, Portugal,  Japan, Spain,  Israel, Italy - oh, wait did I say Italy twice?  Alaska.  Some of my favorite aspects of travel is trying new food, shopping, and just experiencing different cultures.   Wearing an insulin pump with an integrated CGM helps make change in food, exercise, and time a lot easier.  

cats in Aruzzo, Italy 

I am an animal lover.  I started volunteering at a local cat shelter, Stray Pets in Need,  5 years ago or so, and I love it. Some days it's hard not to round them all up and take them home, but I know the hour or two I spend with them each week helps them socialize, and of course the important re-filling the food bowl and making their habitats all fresh.

I am a gluten free foodie. Yes, there is really good gluten free food out there, and often pick places of travel based on gluten free food availability.  Italy, for example is very gluten free friendly.

I'm also a daughter, sister, wife, aunt, sister in law, cousin, friend.

Most of all I'm grateful to be happy, healthful, and ready to take on what life has to offer.

Thursday, May 18, 2017

Diabetes Blog Week Day 4: Throwback Thursday: What Brings Me Down

Day 4 prompt: What Brings me Down

Click here for the 
Throwback Thursday: What Brings Me Down - Thursday 5/18 Link List

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic

I feel fortunate that over the years,  I have gone through a small handful of long lasting bouts with burnout & borderline depression.  Not to say that I don't feel that mental tax of dealing with and managing my disease every single day.  Then there's dealing with how others deal with me and my disease, and feeling anxious about doctor appointments, and dealing with health insurance, and and and...

....and then there are great  days when it seems like the planets align and things run as they should.  And then there are the really really bad days.  Or just really bad days. Or just days.  With  diabetes, when things don't align despite knowing you've followed the right steps, it gets frustrating. You don't feel well physically or mentally.  There's not ever a break from it, even on the easier days.

This post is all over the place but it's a good example of how complex living with diabetes is.

So the question becomes, how do we deal with it all?  The answer to that varies by person and situation, but here are some of the things I've learned over the years that have helped me, and maybe they will help you too:

Stop and take a breath:When I start to get overwhelmed, which is one of my trigger points, I try and stop to take a deep breath and ground myself.   It's not always easy based on how much is running around in my head. But, forcing myself to take a deep breath, remind myself that stuff happens helps me.   I'm then able to refocus my energy away from the negative and put a plan together to move ahead.

Get moving: I have also found it helpful to get moving.  Walk, run, Zumba, weight lift, etc.

Talk it out:  I don't often need advice on how to handle something, but I do often need to vent.  It helps to get it out of my system.  Usually whatever it is passes quickly but of course there are some things that linger longer than I like.

Pet a cat:  To me there's nothing more soothing or calming than a purring cat.

To make a very long story short: take a deep breath, refocus, find something that makes you happy. It's very ok to ask for help. I'm not good at this part, but I'm working on it.

Tuesday, May 16, 2017

Diabetes Blog Week Day 3: The Blame Game

Day 3 Prompt:  The Blame Game - Wednesday 5/17
Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)

I feel fortunate that I have only one example of this that I can remember.  I had just returned to NYC after living in Boston for a while, and needed to see a doctor to get prescriptions.  This appointment was with a random primary care physician I found locally to where I lived.   The first thing she asked me was what my last A1C was.  She didn't ask me my history, she didn't ask me how things were going, just straight to the A1C question.    Here's the thing with me, over the years I've had many experiences like this, and I have gotten quite, uhm, feisty with my responses.  So I don't have to play the "what should they say game" as I told her right to her face.  

My response "Perhaps we should start with asking me what my history is,what my last few A1Cs are, or even just to chat, instead of going right to your textbook question and focusing on the A1C.  Maybe this has been the best A1C I've had in years, but since we are new to each other and you don't yet have my medical records, you are making an assumption about me based on one data point."

My mom cringes when I do stuff like this.  But there's only so many of these types of interactions one can take and you pop.  My filter was off, I was tired, tired of these types of conversations and well tired.  Amazingly she did write my my prescriptions and I was off and never saw her again.

So yeah, that happened. 

The other experience I want to share, is an experience which is how I started this blog.   Several  years ago I had a bout with burnout.  I was doing the bare minimum,  insulin and a few bg checks a day.  The rest was all guess work.  I had an appointment with my CDE at Joslin and I was very tempted to cancel it as I didn't want to get lectured.  Instead, I walked in with my head held high and said "I have gotten off track, I don't have much to show you, help me come up with a plan to get back."  I am pretty sure I shocked her, but I laid it out on the table, took ownership of it and the rest was history.  Well, the rest was every other week visits to check in, fine tune things, and I've been on track since.  That appointment was one of the best I ever had, and it did feel like what I imagine a confessional would be like (I'm Jewish, and we have a lot of guilt, but no confessionals).  

Diabetes Blog Week Day 2: The Cost of a Chronic Illness

Diabetes Blog Week Day 2:Today’s prompt Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

I've never calculated exact costs per year that I've spent on diabetes care. I knew roughly how much I spent on prescriptions so that I could try to calculate flexible spending correctly.  A bit of denial here as to how expensive things really are.   

Between co-pays, deductibles, out of my paycheck costs every 2 weeks for coverage*, is by best educated guess close to $20,000 a year.  *health insurance for 2 people was roughly $530/month. 

I am thankful that I had good private health insurance through my place of employment, though I'm realizing now how pricy it was.  Still less than if I had to pay all out of pocket if  I didn't have any insurance.  This is what boggles my mind this week - how the price of the same medication, for the same dose can vary greatly between plan.  I do understand, sort of, that some of that is based on what the companies all negotiate, but it varies greatly, and you have no real insight into what things really cost until your plan starts.  I know ahead of time what average co-pays are.  But that's where things start to get tricky, and confusing, and gives me a headache.  It's also not like you have a choice between 2-3 PPO's or HMO's at work and can investigate and find the one that works best for your needs.  You really don't have much control.  

I'll  say it again, you  really don't have much control. 

To highlight this point, I recently switched health insurance due to loss of employment, and switching to my husband's plan.   The table below compares just 2 medications, and average appointment costs per year:

I know, right? $900 difference for just 2 mediations.

Costs of things, and insurance and pharmacy benefit and how things are negotiated are above my pay grade.  I guess I sort of wish there was some sort of standard, and that overall the costs of things people with diabetes NEED to live, like insulin, were more regulated and less expensive.   And yes, I know that as a whole things rarely get less expensive. 

Monday, May 15, 2017

DIabetes Blog Week Day 1: Diabetes and The Unexpected

Today is the first day of Diabetes Blog week, and my first time participating.  I haven't blogged on any regular basis so this will be a welcomed challenge.

Today’s prompt: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?
When I think about the unexpected with diabetes, I feel like I can quickly tick off a ton of examples of how my diabetes had a mind of her own and did what she wanted, despite my best efforts and bringing every trick in my diabetes management toolbox, but still wasn't successful in taming the beast.

But I'd rather focus on the unexpected positives that it has brought me.

Sense of Purpose:
I was diagnosed with diabetes at the age of 2, and was fortunate to have gone to diabetes camp, Camp Nejeda.  As an adult, I have come to realize that there's not a lot of local support for adults with diabetes.  My mission of correcting this started about 6 years ago, with many false starts.  Over the last two years I have partnered with my local American Diabetes Association, and Camp Nejeda to create events/programs for this demographic.  My purpose, or mission is to expand these beyond Massachusetts and New Jersey. It's hard work, but I love it and can't wait to see where it goes.

Sense of Belonging
I feel like I always walked to the beat of a different drummer.  I have never been sure if it's because of my diabetes and knowing what I need to do and putting that first, or just how I'm wired.  It wasn't until I met other people with diabetes that I felt an instant connection with.  The people I met when I was 12 at diabetes camp are still some of my closest friends even though we don't get to see each other that often  The PWD  (people/persons with diabetes) that I have met as an adult, in person and online, I've had that same instant connection with, and I love it  The power of "me too" isn't to be taken lightly.

Sense of Being Supported
The DOC (diabetes online community) while we have greatly varying opinions on things, I know will have my back when I need them.  Friends and family are important to my mental and physical well being, but being able to share, vent, commiserate (what happened to that positiveness??) with is what often helps me the most.  Being able to message a friend stating "Ugh, BG dropped from 300 to 90 and I feel like crap" and they know exactly how you feel, is huge.  *Not to imply people without diabetes can't be supportive, they can. It's just different.*

So, while there are many things that stink about having diabetes, these unexpected positive things have been great.   There are so many great people that I've met, that if not for diabetes would never have crossed paths with.

Sunday, May 14, 2017

When life hands you new health insurance, micromanage!

Changing health insurance and or pharmacy benefit manager can be easy, or it can be a tangled web of countless hours trying to get the right information. Rarely is it anything in between.

Having recently gone through this after being laid off from a job I've had for a while (if you know anyone who is hiring, let me know), I'll share with you how I managed to keep my wits about me, despite many hours of phone calls and wrong information at almost each step along the way.

Know what you need:
I may not know where my keys are half the time, and my desk is always a mess, but I am quite methodical when it comes to many things, especially getting what I need to manage my diabetes. 

I recommend starting by compiling a list of all of the medications and other related durable medical items you need.

  • The pharmacy list should contain doses and quantity of medication needed.
  • The durable medical (insulin pump supplies, CGM,etc) should include the manufacturer item number if you have it, this can help eliminate wrong orders. 
  • Not only know what you need, know how soon you need it so you can escalate if need be.

Expect the unexpected:
This advice often drives me nuts, but it's true.  The things I thought would be an issue like CGM coverage weren't. The things I thought would be a non-issue, like approval for my strips with a prior authorization, have turned out to be a major pain in the neck.

Follow up, keep an eye on progress if you can through pharmacy websites.  Check on everything, and inquire as you need.   

I learned today that despite asking my doctor's office 3x in email for Humalog insulin, they       submitted the prescription for Novolog.  I can use either, but this insurance's preferred insulin is Humalog. 

I also learned today that a prior authorization for my strips was submitted, but denied.  They told me that it would be approved if the meter I use is the only one my insulin pump communicates with, which is my situation.  I have no idea now what was submitted in the PA, but now that has to be followed up on.

Take notes:
I sometimes have trouble with this, and if you end up making a lot of calls and getting lots of information, most of which is wrong, it's helpful to try and plot it out. Who said what and when can be helpful, especially if you have to escalate.

Insulin pump supply saga...
I started the process by calling Cigna to find out what they cover, and how to obtain my insulin pump supplies and CGM.  I was happy to learn that it was all covered.  They said to call CareCentrix to order my durable medical.  Simple, right?  Ah, no.  If only.

  • I called CareCentrix to start the process, but they instructed me to ask my doctor for a prescription for what I needed.  I questioned this as usually the third party submits the order, dr. fills it in and off it goes.  I called 2x to confirm this and each time received the same terse answer.  
  • I called the doctor's office  and explained what was needed, and they never heard this so they kindly offered to call CareCentrix.
  • My doctor's office called back a few minutes later and  said that CareCentrix told them that I should call Apria or McKesson, 3rd party distributors. The doctor's office suggested I called Apira as said they currently work with them, and not McKesson. 
  • I called Apira, and to no surprise,  said they are not contracted to work with Cigna and they can't help.
  • I called CareCentrix again, and  pleaded to the woman on the phone to help me. I explained the situation,  and pleaded with her to help me out.  With a few short keyboard strokes she told me that Medtronic is a preferred vendor and to call them.  She explained that CareCentirx is sort of a clearing house for the insurance company, they just confirm benefits.  
  • I called Medtronic and within a few minutes I was set.  The person on the phone told me they have a dedicated team that works with Cinga, and I was set.
  • I call my doctor's office back a few days later to make sure they got what they needed from Medtronic, and to no surprise nothing was sent.
  • Another call placed to Medtronic, and it turns out there was a  valid prescription for what I needed. I asked the person to double check, as that's not what I was told on my prior call.
A few days later I received a call from Medtronic, and received an email that my pump supplies are on the way but my CGM sensors would be a few weeks.  I have to look into that again this coming week. Despite being the queen of follow up, there's only so much even I can take.

Long story short - micromanage,take notes, micromanage, and be sure you get what you need when you need it.  In these situations don't be afraid of being assertive and escalating!