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. 

Diabetes Friends, Pod Changes, And A Lost Bottle Of Insulin

Last Friday night I spent time with local diabetes friends - a family who lived in the next town over. The timing was right and my Omnipod was about to run out. 

A few weeks back, I’d offered to fill a new pod/do a site change in front of the Dmama and t1 AlmostTweenT1 daughter so they’d know what to expect when they went for Omnipod training. Friday morning I texted Dmama, and told her I’d be changing my site between 4:30 and 5:30. If it was good for them, I ‘d stop over. If it wasn’t, we could schedule for another day.

People with diabetes do that. We show-off and explain our hardware; share experiences and help one another out when diabetes is being bitchy. 

We share because we “get it.” We speak the language of diabetes and in the same diabetes dialect. And it’s comforting.   

Those are just some of the gifts of our D community — both online and off - and I love and am so incredibly grateful for those gifts. 

Friday morning I packed my diabetes bag with my almost new bottle of insulin — as in I’d used it exactly twice. 

Plus 2 pods, extra skin-tac, and my PDM and test strips , which were already in my diabetes bag. . 

I was good to go. 

7 hours later I knocked on their door and we caught up on life and life with diabetes.

I also learned that American Girl sold Doll manicure kits with “real nail polish for the dolls and that they only cost $10.”  Also: Said manicure kit came with some hideous looking (at least it looked damn hideous on the computer screen), bubblegum pink nail-polish, that would thankfully wash off.

But to each her own. 

45 minutes later, with 3 units left in my old pod and 2 hours until my current pod officially expired, my friends watched as I cancelled out my old pod; filled the new pod with insulin, went through the PDM prompts, and prepped the skin on my left arm with skin-tac. 

Dmama asked questions and my assistant AlmostTweenT1, pressed the PDM button after each prompt and only after I gave her the OK. 

We were done in a snap. 

AlmostTweenT1 smiled and said “COOL,” then went to go play with her brothers.

I checked my blood sugar: 146. Dmama  offered me a juice- box. I did and bolused for it, and we kept talking.

20 minutes later I started packing up and came THIS CLOSE to forgetting my insulin. 

I didn’t - and made sure it was tucked safely in both its box and my diabetes bag before I zipped it up tight in my diabetes bag and tossed it in my handbag.

We said our goodbyes and promised to meet up in a few weeks. 

I went home, put my box of almost new insulin in the fridge immediately and completely forgot about it. 

Cut to Monday morning when I woke up with an itchy site and a 300 blood sugar. 

My arm site had crapped out with 12 hours to go and 13 units left. 

Shit happens and I went to grab my insulin. 

Which I did… except the box was empty, the insulin bottle was missing. 

I checked the fridge shelf where every bottle of insulin I open makes it’s temporary home - NOTHING. 

I checked in the veggie drawer where my unopened bottles of insulin live. 

I looked on every shelf in my fridge, and then under it. SO GROSS. 

Then I looked on my kitchen floor and under my stove. 

I dumped out my diabetes bag, handbag, and work bag. NADA. 

The clock was ticking, my blood sugar was high, and I needed to get in the shower. 

I also needed coffee. So I temporarily shoved the lost bottle of insulin to the back of my mind,  opened a new bottle of insulin and did what I had to do. 

I knew how lucky I was to have extra insulin bottles in my fridge. 

The cost of one bottle of insulin kept running through my head and the thought of losing one bottle made me sick to my stomach. 

 I looked for that damn bottle of insulin for two days. 

I KNEW I hadn’t left it at my friends. 

A. She would have texted me ASAP.

B. I knew that if I texted and asked if they’d found an extra opened bottle of insulin, my Dmama friend would worry. 

I didn't want that. 

Plus, I was worrying enough for the both of us. 

Last night I came home and kept thinking about that damn bottle - I had a feeling I’d find it 6 months later and in a place I never thought to look. 

Maybe it fell out of my bag as I was going up the steps. I checked in my stairwell and up my stairs. NOTHING. I flipped the cushions on the couch and then checked under it. ZILCH.

And if it was in my car — it was cooked. 

I thought about what if I didn't have backup - and what if I'd had to explain losing a bottle of insulin - the very stuff that keeps me alive to my insurance company - and I knew they would tell me that I was SOL. 

I took a hot shower, put on my pajamas and flipped through NetFlix. 

Before I went to bed I decided to check near the fridge one more time. Nothing. 

But something made me look in my pantry — which I’d already looked in multiple times. 

And there in the corner —  on my white and gray patterned floor…. was my white labeled bottle of insulin — blending in so well I could barely see it.

I washed the bottle under cold water, then swabbed it with alcohol. 

When it was dry, I marked it with a purple Sharpie , so I’d know to use that bottle first. 

And I was thankful.
I was so tired, but I couldn’t sleep. I kept thinking about others who weren't lucky -  because they couldn't afford insulin or were forced to ration insulin and  are no longer here.

Slate.Com : With Diabetes, "Even" Little Words Matter

This post started out as a post about the disgusting Mylan epi-pen price increase and how it mirrors the insulin prices increases, but then it turned into an article about Slate.com’s diabetes headline from yesterday, because the word "even" in the article title rubs me the wrong way.

I’m still working on the epi-pen article - and neither post is an Insulin verses Epi-pen article. Nope - both diseases are life threatening, both medications save lives and both price increases are appalling and I'm enraged at the eli pen price increase. 
WE ARE IN THIS TOGETHER.
Today’s post is about words - specifically the word “EVEN.” 
And how even little words can negate a price increase and add to diabetes stigma. 
#######
Yesterday, Slate.com ran an article with the headline: Good Lord, Even The Price of Insulin Is Skyrocketing.

Yep Slate, this is nothing new. 
The price of insulin has been skyrocketing for years -I now pay more for insulin than I did back in 1997 and more than my parents did when I was diagnosed way back in 1977. 
 Insulin is also a life saving drug, but nobody except those living with diabetes seems to care about the continual price increases. 

The Diabetes Online Community has been writing about about the high cost of diabetes for years - including the ridiculousness that is the ever increasing cost of insulins. 
Check out HERE, HERE, and HERE for a small sample of DOC voices on the subject.
Recently, the DOC has rallied behind #diabetesaccessmatters, because you bet your sweet ass it does.

Thank you, thank-you, thank-you  for featuring the insulin price increases in your publication. 
But,and of course there's a but. 

BUT what's with using the word "even" in your title? 
Using the word “even” in your title re: skyrocketing insulin prices detracts from the impact that those stratospheric price increases have on every single person living with diabetes who struggle to pay those skyrocketing prices in order to stay alive. 
Sidebar: You might say semantics, but not just my POV, btw. 

The word “even” lessens the struggle that millions of people living with diabetes are going through daily in order to pay for the insulin they/we require order to live. 

Diabetes is not cheap - and today it's more expensive than ever.

Wuestion: Would you have used the word “even,” to describe price increases for diseases such as crohn’s, life threatening allergies, or cancers? 
Nope, I don’t believe you would, so why is OK to use that word and in that context when describing the price increase of drugs for a group of diseases (type 1 diabetes, type 1.5, type 2 diabetes,) that millions and millions of people live with?

Not OK and here’s why. 

1. By using the word “even,” you’re subconsciously adding to diabetes shaming and adding to the stigma associated with diabetes. 

Being diagnosed with diabetes is often perceived as a character flaw, so maybe for some people reading your article, it might be considered OK for those of us who need insulin to stay alive, to pay a little more. 
It’s not OK.
Diabetes is not a character flaw - diabetes is hard fucking work and I haven’t had a vacation from my t1 diabetes in well over 3 decades. 
I’ve lived with diabetes longer than I haven't and diabetes accompanied me from third grade until I graduated from college and every day since. 
Diabetes was with me as I watched my favorite sister get married, went with me on my first date, stumble along side me through my first sexual experience and every one since. 
Diabetes has been my traveling companion to a dozen countries and at least 15 states. 

 Diabetes has made the move with me to different states; stood by me as I buried both my parents, discovered the Diabetes Online Community, and sat in the third row with me when my niece made her Broadway debut.
Type 1 Diabetes took the life of my older sister Debbie and broke my parents heart in the process. 
Diabetes has made me feel guilty and diabetes has me saying I'm sorry, even when I am anything but. 
Diabetes been the longest relationship I’ve ever had - braking up with diabetes is not an option at this time because there is no cure for my type 1 diabetes. 

Don’t even get me started on Diabetes Burnout!

Speaking of cure, the use of the word “even,” makes my disease seem less cure worthy and in actually, has the potential to lessen funds raised to find the D cure. 

But back to diabetes day to day - and the shear cost of living with diabetes. 
I know people with diabetes (type 1, t1.5, and type 2,) who can’t afford the cost of their insulin, or other medications, test strips, and diabetes durable medical equipment (insulin pumps, CGMs,) and play Russian roulette with their health every month because they’ve either run out of their meds/supplies before their prescriptions are due to be filled.
Or worse, they don’t have insurance and go without out because they’ve run out of money.  
Unfortunately, diabetes is not the same disease every day - some days you require more insulin, some days you require less. Sometimes you need to check your blood sugars 10 times a day, other times 7 will suffice. 
But if you live with diabetes, you're lucky if your insurance will pay for 5 test strips a day. And if you have diabetes and are on medicare - you only get 3 test strips covered per day. 
Did I mention that test strips are the litmus tests that people with diabetes use (as well as CGMS - but that a whole other insurance ball of wax for another post,) use to monitor their blood sugars and measure out their insulin. 
Insulin can kill if you admisister too much or too little - so YES, checking blood sugar is CRUCIAL AND EXPENSIVE.
Speaking of insurance - people with diabetes  (PEOPLE WITH ANY ILLNESS,) spend more time arguing with their insurance company over denials, mistakes, and fighting for lifesaving medications and procedures. 

So Slate, when you use the word “even” in your title, you aren’t doing PWD (people with diabetes,) a favor- because the majority of the public already think it’s our fault we have diabetes.  
Nobody, no matter the diabetes type, deserves to be treated any less than with respect because of their diabetes status. 

If you want more info regarding what it’s really like to live with diabetes, ask the thousands of people in the Diabetes Online Community who will be willing to share what it’s really like to live with diabetes - step by step, deductible by deductible, crazy ass high co-pay by co-pay. 

Lastly Slate, you’re a HUGE publication and online presence - and a great one.
I read your site daily and I learn and laugh from your posts. 
 Your words, even small ones have power, so please use them wisely.