Tuesday, May 16, 2017

Day 2 of DiabetesBlogWeek: The Cost of A Chronic Illness

Day two of Diabetes Blog Week: The Cost of A Chronic Illness.
The cost of my chronic illness, t1 diabetes keeps me up at night from worry and causes me to grind my teeth when I sleep - giving me yet another pre-existing condition (and two cracked molars,) in the process. 

The cost of diabetes makes me depressed, angry, and perpetually in a state of fight or flight mode.

The cost of diabetes has a negative affect on my savings and retirement plan and that has me frightened for my future, not to mention my health. 

The cost of diabetes makes me swallow my pride and ask my endo for samples  because for years my co-pays were crippling - and even thought they are better, they are still far from "easy on the wallet."  
And I’m grateful when he is able to give them to me. 

The cost of my diabetes means I wear an insulin pump with an expired warranty.

I’ve been acutely aware of the cost of diabetes since I was in single digits - and I guarantee that every single child living with diabetes/ has a parent or sibling living with D, knows how much diabetes costs their family - not only monetarily - but emotionally. 
I know the cost of diabetes kept my parents up at night and I know the cost of diabetes had a negative impact on their own health.
I know that some of my siblings sans diabetes, felt that they received less because of the financial burden that diabetes placed on my parents. 
3 out of 6 children with dt1 plus my dad - you do the math.  

So in turn, the cost of diabetes always has had me continually saying "I'm sorry," since the age of 8.

I do my best to allow my diabetes freak flag to fly, but some days the weight of my diabetes guilt has the power to stop me in my tracks. 

The cost of diabetes creeps into my daily thoughts, creates anxiety, and threatens my well being.

The cost of diabetes has turned me into a diabetes hoarder of insulin, pump supplies, test strips, and every thing in-be-tween, for myself and for others. 

The cost of diabetes has forced to advocate for myself from day one - and in turn has made me advocate for others. 

The cost of diabetes has made me MARCH. 

Do I think the cost of insulin and everything else related to diabetes is too expensive? 
Is the Pope Catholic? Of course I do! 
When the cost of a drug people use to stay alive is unaffordable to the very people who need to stay alive - I have a problem with that. 
I have a problem with R&D always being blamed for the cost of insulin that’s been off patent for well over a decade - and I’ve been incredibly vocal about that - and will continue to be. 
I have a HUGE problem with Shane Patrick Boyle and others dying because their insulin Go-Fund-Me accounts didn’t work fast enough. 
I have a problem that in the United States of America citizens living with diabetes have to resort to crowd sourcing in order to obtain insulin. 

I have a problem with families and individuals going broke and going without because they have to pay for insurance.

So I ALWAYS speak up, LOUDLY and often - sometimes face to face with Pharma, passionately and unapologetically - and I do not hold back. 

I make phone calls, send emails, and I write. 

My local Congressman knows my name and face because I called his office so many times about the cost of diabetes that he invited me to a sit down at his local office. And he was one of the 20 republican congressmen to vote AGAINST AHCA.

I use my voice, my pen, my and my vote - and I learn from others who are doing the same. 

The cost of diabetes requires me to know about insulin access programs and the likes there of - and tell others about them. 

The cost of diabetes has cost me the lives of people I love and people I’ve never met. 

The cost of diabetes has made me a fighter not by choice, but by necessity.

The cost of diabetes is exhausting and never ending. 

And the cost of diabetes has made me persist and I WILL NOT STOP.


Seo / A Diabetic Abroad said...

Thank you for everything you do for the community, Kelly, and for fighting for others even while you have to struggle to fight for yourself. You are an inspiration.

Unknown said...

thank you for this inspiring and heartbreaking post. It is unbelievable that this is the case in a country like America. We are standing with you here....looking forward to reading more

Karen said...

Agree. I especially relate to the wording part. I stockpile as much as I can.