Tuesday, July 4, 2017

Batteries Need Charging - Headed out to #CWDFFL2017

So it's been a while since I've posted and I apologize. 
It's been a little crazy on this end and honestly, I've been burned out as of late - like crazy burned out - my preverbal well is dry and my batteries need recharging - and I can cop to it. 
Which is why I'm incredibly grateful to be flying out this morning to attend The 2017 Children With Diabetes, Friends for Life Conference in Orlando, Florida. 
I can't wait to get my green bracelet on, (literally and figuratively,) and spend 5 days with friends who are indeed family. 
Working and attending amazing sessions, running the #IwishPeopleKnewThatDiabetes booth, and spending time with people who "get it!"
Also, did I mention that all the cwdffl meals have carb counts listed?

follow the #cwdffl2017 hashtag and I promise to post from the Orlando! 
If you're attending - I can't wait to give you a hug! 

Friday, May 26, 2017

HOLY CRAP, That Ginormous Sweet Potato Looks Like A Pancreas!

I went to by my local Farmers Market early this morning, 
stopped at a stand and saw this ginormous sweet potato 
and was like:


It totally does - and now you can't unsee it.

And then I bought it for a whopping 50 cents.
You read right - it cost 50 freaking cents!
It really is ginormous & weighs 3 pounds.
It's bigger than my face. 

And someone @ the farmers market has the pic to 
prove it!

Also, I have no idea how long to bake because, WOW.
I bought these strawberries, too because DAMN!

Friday, May 19, 2017

Diabetes Blog Week Day 5: More Than My Diabetes

Sandbar at sunset.
Photographed as found.
Today is the last day of Diabetes Blog Week (THANK YOU KAREN,) and it's all about our passions besides diabetes
I am more than just my diabetes and I certainly have other interests besides diabetes. 
I love cooking and love cooking for others.
I love traveling and I need to do more.
Children and animals make me smile and I try and spend as much time as I can with both.
Like my mother and her mother before her, I love gardening and growing things. 
Getting my hands dirty and growing veggies and flowers from seeds, to sprouts, to full bloom and on the vine make me feel accomplished, peaceful and whole.
Books have been my life long friends, going to the movies is and attending plays are important to my my emotional well-being. Speaking of, I love performing and I miss it. 
Yours truly is a fan of all things sparkly because I am my mothers daughter.
I have a large collection of antique jewelry (some real, mostly costume, all sentimental) spanning the decades and I love learning about and finding new pieces. 
My collection adds flair to my most basic outfits - as well as my most fab.
Native American jewelry are stories in silver and stone and I love learning and wearing those stories. 

The beach and the ocean bring me peace  - I love being in and on the water - along the shore and in the waves are where I feel most free and centered.

Same goes for art in all mediums, though photography is the one I actually work in.
I LOVE  photography. 
Taking photographs is way for me to see the world through different lenses and perspectives - it’s also my therapy.

There was at time I loved to have my picture taken - now I like to be the one taking the pictures.
Some of my photos are in this post and I hope they make you smile!
Stormy seas.  
Autumn on the beach~

Rodin's "The Thinker."
Philadelphia, PA

The Women's March/1/2017
Architectural Details
Salad Days~
The three amigas

Thursday, May 18, 2017

#TBT #dblogweek Day 4: The Diabetes Stuff That Brings Me Down

It's day four of Diabetes blog week.
Today's topic is a #TBT from the 2014 Diabetes Blog Week. It's all about emotions and diabetes - the diabetes stuff that brings us down - and what brings us back up.  
May is Mental Health Month - diabetes impacts our physical and mental well being. Depression and diabetes go hand in hand - talking about it is key -as is know that we aren't the only ones who struggle. 
Seeking help and support from friends and professionals can only help. 
There's so much about diabetes that brings me down.

The fact that diabetes is 24 X&, 365 days a year with no time off for vacations or good behavior and causes me to experience diabetes burnout more often than I’d liked

The stress that diabetes puts on me (both physically and mentally,) has the ability to make me feel like Atlas - and sometimes I fear that the weight will cause me to topple. 
Add the stress that diabetes has put on my family, and my friends with and without diabetes, and it is easy to become the girl with the weight of the world on her shoulders
The fact that the public, for the most part - never gets diabetes right, and the same can be said for diabetes and the media. 
Diabetes Media Muck-ups put all of us on the defense and has us perpetually correcting the population. 

Don't even get me started on blood sugar craziness!

Then, there’s the people I’ve loved and lost to diabetes - I miss them them terribly and when I think about diabetes cutting their lives short it makes cry and makes me relive the grief of losing them.
Losing friends to diabetes is fucking hard.

Seeing my parents hearts break because they lost their child to diabetes was devastating. 
It changed our lives and our family dynamic forever - and to this day, we are are still dealing with the ramifications of Debbie's death.  
Personally, there are moments when I wonder the type of person I would have been and the life I would have led had diabetes not taken Debbie from us. 

And on those days, when diabetes brings me down into the darkness - light peaks through the darkest of clouds, and I am reminded of the gifts that diabetes has brought me.  

Those gifts are you. 

Our community, the Diabetes Online Community, has given me so much support, friendship and love. 

My diabetes friendships that span the globe, enrich my world, and have given me a strong sense of self and determination. 
Diabetes has given me a voice and requires me to speak up for myself and for the people I love. 
Diabetes (and my mom,) taught me to pull myself up by bootstraps and pull myself out of the muck. 
Sometimes on my own, other times I can’t do it alone. 
And in those times when I am struggling to stand up in, and get of the muck the most,  the Diabetes Online Community lifts me up, dusts me off, and acts as my compass and travel companions on the road to better. 

And I am grateful for the gifts. 

****FTR, I know I missed day 3 of Diabetes Blog Week. 
I will make it up and post, but I didn't want to get behind on day 4, too! 

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.

Monday, May 15, 2017

#DblogWeek Day 1: The Rules of Ginormous Flat Screen TVs Are Finite

It's the first day of #dblogweek - and today's topic is Diabetes and the unexpected

Diabetes makes me look at things differently - and find alternative solutions, a’la MacGyver -  and that’s a great thing.

Rubber Bands to procure your insulin pump
For instance, a hair rubber band isn’t just for hair dear readers. 
It’s also a trusty pump reinforcement for my pump clip when the little lock part of said pump clip cracked off.
No harm, no foul, and no freaking out about not being able to clip my pancreas to my hip 
Sidebar: Elastic ribbon bands work especially well - and add lots pretty to your pump! 

Strategic placed low blood sugar bedside station
Years of middle of the night lows have taught me that strategic bedside placement of juice boxes and a jar of glucose tabs on the bedside mean no stumbling in the middle of the night during a low blood sugar, thus allowing for physical safety and staying toasty under the covers.

Speaking of.... Juice box requirements in the middle of the night have taught me to suck down the juice boxes more efficiently. Who has time for fumbling with each individual juice box straw? 
Not this chick.
I've discovered through trial and error that the first straw/same straw for multiple juice box nights and avoid fumbling with additional wrapping.

Diabetes has taught to assess my surroundings
No matter where I go, I quickly assess the food situation and ALWAYS make sure I bring something to treat a low - just in case there's no food and or gross food. 

But it's not just about food. 
Recently I was at a restaurant with a group of 20 people - and my pump battery went from 3 bars to 1right after I ordered my pork sandwich.

I was in a city I wasn’t familiar with, I didn’t know where the closest drugstore was, nor did I have a car to get there. 
But a quick study of my immediate surroundings and my diabetes MacGyver razor focus zero'd in on the 2 ginormous flat screen televisions mounted on either side of the bar - and not because of the basketball games. . 
The rules of ginormous flat screen televisions are finite. 
Where there are wall mounted flat screens, there are television remotes. 
Where there are there are remotes, 9 times out of 10, there are triple AAA batteries. 
Did I mention my pump runs on a singular triple AAA battery? 
I moseyed on up to the bar, explained my situation to the bartender, and asked if he had an extra battery. 
The bartender asked the manager, the manager went to his office and came back and handed me two triple AAA batteries - just in case. 
I thanked him and promised a positive review on YEP. 
Note to self: Get cracking on that positive YELP review!

Diabetes as an empathy builder
Not only does diabetes make me view thinks differently, it makes me view people with diabetes and without, differently. 
Thanks to diabetes  (and my parents,) my empathy factor is dialed up to 11.
I get what it’s like to have a bad day - and diabetes or not, there are days when physically or mentally - we're not always whistling dixie.
Everyone of us fights daily battles the rest of the world knows nothing about. 
Those battles, no matter how large or small, can be incredibly draining, so practice empathy and kindness. 
We need more empathy in this world, we need to understand others better, we need to practice kindness and remember how much it matters.
And we need boatloads of all of the above. 

Friday, May 12, 2017


On Wednesday night I came home late and to the news that Lilly had announced price increases for a multitude of drugs, including insulin (7.8% price increase,) and I was pissed. I emailed Lilly at midnight, spoke with them yesterday afternoon for 38 minutes. 
Marinated and thought about what to write. 
Every single person I know living with diabetes struggles to pay for their disease - even those with the best insurance. And I'm angry that the price to keep us alive continues to go up.
And I'm angry about other things too. 
But this isn't just a Lilly problem, other insulin companies have will be increasing their prices in the very near future and have publicly stated as such. 

I'm angry that people with diabetes are once again being hit by the financial implications of a disease we never chose or wanted. A disease I am doing my absolute best to live with - and hopefully helping others to do the same.

I’m angry because I’ve lost so many people I love in my bio and DOC family to diabetes.

I’m angry because high ranking White House official publicly perpetuated diabetes myths and stereotypes by blaming people living with diabetes - and used us as an excuse when it came to the return of pre-existing conditions clauses and high risk pools.. 

I'm angry that my friend with three children with diabetes was driven by tears of anger and frustration to write THIS

For pete's sake we can buy the same insulin in Canada for under 40 dollars.

I'm angry at health insurance companies, PBMs, and drug companies blaming one another while continuing to take our money.  

Im angry that all three can hike our prices just because they can and continually point the fingers at one another. As far as I'm concerned, they're all at fault and it must stop. 

And quite frankly, I’m angry that whatever good that's come out of the past 5 years of Lilly’s engaging with the DOC, up to and including the insulin access workshop three weeks ago, Monday's announcement of Lilly and other companies cross industry participation in Express Scripts GoodRX program, may have thrown under the bus - as were the Diabetes Advocates who attended the Insulin Access Workshop - and that makes me LIVID.
I'm proud of the communication channels that have been opened and I don't want those channels to be closed - but the announcement of yet another price increase that will impact millions, means those channel are clogged and in need of a good cleaning.

My anger and frustrations aren't focused on the PR/Patient Engagement side - I'm angry, you're angry, the PR team knows it.

The PR team aren't the Decision Makers at Lilly and their job became a lot harder this week and they have a lot of muck to clean up.

Sidebar: Years ago, I worked for a Corporate 300 technology company in Communications.  
My department was never a privy to price increases - that info was handled by Investor Relations,  Finance and Legal - they never divulged price hikes because of insider trading and investor fraud. Those of us in Corp Com and PR found out about the price hikes when they sent out their own press releases on the subject. I believe the same rules apply to Pharma.

No, my anger is directed at the Lilly Kingfishes. CEO's BOD, the Financial, Legal, and Investor Relations departments. And the Investors.

These are the folks who are involved in price increases. 
These are the folks who decided that now was a good time, a time when people in the United States are dying because they can’t afford insulin, and during a shit show happening in the United States with the implications of AHCA, the destruction of ACA, causing very real fears and emotions to run high. 
These are the folks decided that May 2017 was a great time increase prices.


And there's a lot to learn from this classic example of a billion dollar corp’s right hand 
( CEO, Board of Directors, Legal, Finance, Investor Relations) most likely not knowing what the left hand (PR, Social Media, Patient Engagement,) is doing - and most likely not caring. 

FTR and for those who have asked, I don’t believe that the Insulin Access Workshop was a PR stunt  - though it had the potential to generate some good PR and programs. 

Same goes for Lilly re: announcing their participation in the GoodRx.com

Seriously, what company would announce that they were participating in a program (including Sanofi, and Novo,) that reduced the price of insulins and other medications on the list by 34% price decrease for under insured/ uninsured - and then announce a price increase? 
That's CRAZY. 

Clearly there was some MAJOR communication issues between departments. 

Sidebar: Do I think that price of insulin with the 34% decrease in the GoodRX program still makes insulin too expensive? 

You bet I do. But between you and me and maybe it was wishful thinking, it was a good first step.
And I was hoping that it would force PBMs and Health Insurance companies to make the the next move. 
And now the positive that could be, has been dimmed because of Wednesday article re: the insulin price increase. 

Bottom line. People are awake and angry. The price of insulin is too damn high. 
Lilly’s head honchos, and their Financial, Legal, Investor Relations teams, need to get their heads out of their investors asses and hold the people who actually use their products in higher esteem - they need to put us first - or more realistically, they need to put investors and customers on the same playing field, instead of one side always being the victor. 

Those same people also need to educate themselves on what's going on with the patient engagement side of their company. 

Lilly, Sanofi, Novo Nordisk, investors need to make noise re: the unrealistic price hikes - peoples lives and well being are at stake - and they are either part of the solution or part of the problem.
Also, this isn't just an an insulin issue - if it's happening with all our medications, it's happing with investor meds too. 
They have the power to make real change - and we will be watching.

Right now, Lilly needs step up because the spotlight is glaring on them - things are only going to get hotter. 
People are angry - the price of insulin needs to go down, and Lilly, Novo Nordisk, and Sanofi need to make it right.

And the conversations need to continue - no holds barred.

Sidebar: Next time anyone feels the need to question diabetes advocates who sit at the table and advocate with industry face to face, remember this. 
EVERY SINGLE DIABETES ADVOCATE I KNOW works their asses off to advocate for change - it's 24X7, it's time away from our families, from our jobs, from our lives.
It's mostly thankless but we persist through good times and the bad, because we want to help people living with diabetes - and we're not going to stop.