It’s day two of Diabetes Blog Week, and today we talk about the costs of living with a chronic illness.

Today’s prompt:  The Cost of a Chronic Illness
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?

Today’s prompt is timely, as the costs of living with diabetes have been a hot button issue as of late.  The costs of insulin and other supplies just keep rising and there’s no end to that in sight.  And there’s nothing but finger pointing going on between the big pharmaceutical companies, insurance companies, and prescriptions benefit managers, while patients are left with making difficult choices in order to get the life saving medications that they need.  It’s maddening and needs to stop.  But when will it?

I know that I’m fortunate to have the insurance coverage that I do through my employer.  I’d be dead without it.  But I’m still left struggling to pay for everything that I need most months.  The chart below is offers a glimpse of what my diabetes medications and supplies cost each month.  It’s broken down by cost without insurance, by what my insurance company pays, and by what I pay in copays.

Monthly Diabetes Medication/Supply Costs

I recently added a Dexcom Continuous Glucose Monitor to my diabetes tool box.  There were upfront costs for that, and there will be ongoing monthly costs as well.  Here’s a look at that:

Dexcom Cost breakdown
Dexcom G5 Mobile Transmitter – $984.60

Dexcom Receiver – $156.71

Dexcom G4 Platinum sensors – $319.20 ($106.40 per box of 4.  x 3 months).

Total out of pocket cost:  $1,460.52

Not included are the costs for lancets, glucose tabs, alcohol prep wipes, Tegaderm and opsite flexifix, and any other supply that I’m forgetting.

And these are just the month expenses for managing my diabetes.  This doesn’t even account for the expenses related to managing the congestive heart failure, PTSD, asthma, acid reflux, sleep apnea, etc… that are also included in my collection of awful chronic illnesses.

I could rant about the financial side of this all day.

But the costs aren’t just financial…

My chronic illnesses cost me so much more than money.

How much time have I lost to checking my blood glucose multiple times a day?  To the multiple daily injections of insulin that I take? Those minutes add up.  And that’s not to mention the mental anguish of stabbing yourself with needles all the time.  Good grief.

How many hours have I lost sorting all of the oral medications that I take each day? It’s a necessary evil, but I hate it so much.

How many special moments have I missed with family and friends because I just wasn’t well enough to be there?  Too many.

How much sleep have I lost to fears that my heart would give out in the middle of the night?  I’ve lost count.

How many times have I considered suicide because it’s all become too much to handle? More than you want to know.

And speaking of family and friends…

What have my chronic illnesses cost them?  Heartache, worry, grief, money, and memories.  And so much more.  Because I’m not the only one living with them.  Their lives are touch by them as well.

That’s the hardest part of life with chronic illnesses…

It costs too fucking much!

To read what others have written about the cost of living with a chronic illness, visit the link list @ The Cost of a Chronic Illness – Tuesday 5/16




Published on 05/15/2017, by in Diabetes, Diabetes Blog Week.

Welcome to day one of Diabetes Blog Week, an annual initiative organized by my dear friend, Karen, over at Bitter~Sweet Diabetes. I’m both excited and proud to participate and support this event for the 8th consecutive year. 

Today’s topic: Diabetes and The Unexpected
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?

From the the Islets of Langerhans, in the pit of my Confusing Pancreas, here are the top 10 things that I didn’t expect in my life with diabetes.

10.  I didn’t expect to start a blog about my life with diabetes and congestive heart failure, or for it to still be around 8 years later.

9.  I didn’t expect to find such an amazing community as I’ve found in the Diabetes Online Community.

8. I didn’t expect to meet so many wonderful people because of my diagnosis.

7. I certainly never expected to be traveling the country to meet strangers I met online.

6. I didn’t expect diabetes to impact every aspect of my life.  But it does.

5. I didn’t expect to deal with as much burnout as I have.  This shit is hard to live with 24/7/365.

4. I never expected to find test strips in the microwave, the fridge, or dryer lint trap. They are everywhere!

3. I never imagined that it would all cost so fucking much. Even with insurance.

2. I didn’t expect a label to mean so much in terms of my treatment options, the stigmas I would face, and my identity.

And finally, the number one thing I didn’t expect in my life with diabetes is:

1. Surprise, you were misdiagnosed 7 years ago! You don’t have Type 2 diabetes, You have LADA!

And there you have tonight’s top 10 list, ladies and gentlemen.  Good night, folks!

To read what others have written for today’s topic, visit the link list @ Diabetes and The Unexpected – Monday 5/15 .

Published on 04/29/2017, by in HealtheVoices17.

During the weekend of April 21-23, I had the opportunity to attend the HealtheVoices17 conference in Chicago.  It was an amazing experience, bringing together 105 advocates from around the world, who represented 35 different health conditions.   I’m still trying to wrap my head around the events of the weekend, and will have more posts on it soon.  As a start, though, I want to share the illustrations that two incredibly talented artists created to document each session as they were taking place.  Great work, Monica and Kevin!

Day 1

Group session: Energy Management with Rhonda Waters

Group Session: Together We Thrive: The Power of Our Stories

Panel Discussion: Combatting the Stigma of Chronic Illness

Empathy and Emotion: Navigating the Advocacy Landscape
While Maintaining Your Own Mental Well-Being

Day 2

Group Session: The Facebook Family of Apps & the Patient Journey

Breakout Session: How to be an Effective Policy Advocate

Breakout Session: Storytelling in a Mobile World

Breakout Session: Advocacy Beyond the Blog:
Making the Most out of a Medical Meeting

Breakout Session: Panel Discussion: Media 101:
Approaching and Building Relationships with the Media

Breakout Session: Here’s How to Get Video Done

Breakout Session: How to Grow Your Audience Smartly and Effectively

Breakout Session: Creating Credible, Strong Content –
How to Interpret and Share Scientific Data with Your Audience

Breakout Session: Panel Discussion: Showing Your Expertise
While Financially Supporting Your Online Advocacy

Group Session: The 10 Fundamentals of YouTube:
How to Set a Creative Strategy

Disclaimer: Janssen paid for my travel expenses for the conference.  All thoughts and opinions expressed are my own.