Wednesday, March 29, 2017

The High Costs of Diabetes Kills: RIP, Shane Patrick Boyle

 Shane Patrick Boyle has been on my mind and in my heart since last Thursday. 
I've reached out to Shane's cousin on Facebook, but haven't heard from her yet - she's got a lot on her plate. 
Still, I wanted to post the story so that we could help Shane's family - and to prevent this from happening to another person. 
Nobody should die in the United States, or in any other country because they lack the funds to pay for insulin, or don't have access to insulin.
#DiabetesAccessMatters #insulin4all
This is Shane Patrick Boyle.
RIP: Shane Patrick Boyle
This is the link to Shane’s Obituary.
Cause of death: He couldn't afford his insulin.

From all accounts, Shane Patrick Boyle was a gifted writer and graphic artist, founder of ZineFest, Houstona good son and brother, a kind and gentle man with tremendous talent and a giving heart. 

This is the link to Shane’s Go-Fund-Me for insulin, which has now become his G0-Fund-Me account for funeral expenses - for Shane and his mother. 

Shane passed on March 18th, and according to his Go-Fund-Me Page, "Shane died because he was trying to stretch out his life saving insulin to make it last longer."
Shane moved back home to help take care of his sick mom, Shirley (she died on March 11th,) and his healthcare was put on the line. 
Because he moved, Shane lost his Rx benefits, was between doctors and needed insulin for his type 1 diabetes. Shane was waiting for his ACA status to be approved and was stretching out his insulin until he had enough money to pay for his insulin, and see a doctor to prescribe prescriptions. 

I didn't know Shane in real life or online, but I do know that In 2017, no one should die because they can't afford insulin or diabetes supplies- Not a single person.  

In 2017, nobody in the United States should have to set up a GoFundMe account for insulin, but to date, 9,242 people have. 

My heart breaks for Shane and his family and I am so fucking angry!

Most of us are are so lucky to be in the know, to have a computer or smart phone at our fingertips, to have others who understand, can relate, and can help us when we are need of diabetes supplies. 

I don't know if Shane was aware (-and even if he was, he might not have had the funds to do so,) that he could purchase Regular, NPH, and 70/30 at Walmart and sans RX.
Yes, antiquated insulins and far from efficient, but they most likely would have kept him alive.  
Sidebar: Starting in May, CVS will offer  Novolin R and Novolin N and Novolin 70/30 for $25, per 10ml bottle and without a prescription. 

I don’t know if Shane knew of Insulin Companies assistance programs (Lilly, NovoNordisk, Sanofi), and other diabetes related assistance programs
But those lifesaving programs require paperwork and time to be vetted.

Unfortunately, Shane ran out of time.  

Shane's insulin was off patent, yet it still costs a fortune without insurance - and in many cases with insurance.
Insulin prices have increased exponentially and across the board, every quarter since 2002.

Insurance Companies and the middlemen increase the price of insulins and other drugs  because they see dollar signs and people with diabetes pay the price, financially and in some cases, with their lives. 

Around the world people with diabetes are dying because they don't have access to life saving insulin.

In the United States of America, people with diabetes are dying because while they have access to insulin at every drugstore, they can't afford the cost of the the insulin they require to stay alive.
Click HERE for a breakdown of diabetes costs around the globe.
It's beyond wrong - it’s fucked up - and it must stop.

I don’t know if Shane was aware that the Diabetes Online Community existed or that there were various facebook groups like the non-profit, Type 1 Diabetics Pay It Forward, where people with diabetes give/trade with those in need, or organizations like Insulin4All - that could have helped him. But I wish with all my heart that he did
I know that if the DOC knew of Shane's struggle, we would have done our best to help Shane because we’ve all been where Shane stood. 
All  of us have received and given help to other people with diabetes in need.

When I learned of Shane's fate, I cried myself to sleep - I also sent some of my contacts at insulin companies, insurance companies, and la makers links to Shane’s go-fund-me page - and his obituary. 
And I suggest you do the same. 

Join The American Diabetes Association and sign the petition to make insulin affordable.
Advocate - your voice matters, so make noise!
 Help Shane’s family pay for his funeral (any funds leftover will go towards a diabetes charity for those who struggled like Shane,) attend the national/your local March For Health on April 1, (I’ll be at the NYC March,) and fight like hell so this can’t happen again.

In a few weeks I will be attending an Insulin Access Workshop - and you can be damn sure that I will be bringing up Shane's name and story to Pharma - because they need know!

Tuesday, March 28, 2017

Sometimes My Body Screams Like A Wild Howler Monkey For Carbs

I listened to my body, and at that moment my body was screaming like a wild Howler monkey for carbs!

The other night I wanted to make a low carb Italian chicken dinner (consisting of grilled chicken, red sauce an mozzarella, sitting on top a big, fat, delicious salad. 
I wasn't necessarily trying to eat low carb, I was just craving chicken, cheesy, red sauce and big salad goodness! 

But I didn’t give into my cravings because my body had other ideas. 
My blood sugar had been running on the lower side of normal for most of the day.
Not super low, but low enough to require  lower temporary basal rate, blood sugars in the 90s and grazing throughout the day. And when it came time to make my dinner, my blood sugar was 74. 
Clearly this chick needed some carbs as substanence  - and the thought of dealing with more lows after dinner wasn’t appealing.
Grilled Swiss cheese on a big slice of Jewish rye and with a side of broccoli it was - and I was OK with that. 

Sidebar: Who the hell isn't Ok with grilled cheese? 
Grilled cheese was a quick and delicious solution. I was hungry and bordering on hangry, and the grilled Italian chicken breast salad would have to wait for a more solid blood sugar day.

Diabetes requires us to go with the flow, be diligent and continually make split second decisions. 
Some are easy, some not - but we do it, because we have to.
Yes indeed, I I enjoyed my grilled cheese sammi and broccoli.
I didn’t spike, and my blood sugar was 160 before bed. 
I corrected even though my gut and the days blood sugars were telling me not to, and I ended up sucking down a juice box at 4am. 
The next few days were juice box free and I finally made me delicious low carb grilled Italian chicken salad. 

Yep, going with the flow... embracing my inner howler monkey calling for carbs... not to mention the juice box on my nightstand~  

Wednesday, March 22, 2017

TODAY, Call Your Rep In Congress & Tell Them To Vote "NO" Re: The AHCA, #RyanCare/#Trumpcare

Thank you AARP for the above image! 
I have to speak up, because today our future healthcare is at stake and tomorrow congress votes. Today is the day to call your rep in Congress and tell them to vote NO re: repealing and replacing ACA with The American Health Care Act - the republican replacement plan for ACA.
FTR: If you don't like ACA/Obamacare, I get it - but the Republican Replacement Plan is horrible! AHCA brings back high risk pools - devastating for those of us with pre-existing conditions; adds an age tax to anyone over the age of 52, includes drastic cuts to medicaid, which so many adults and children with diabetes/ other illnesses require to stay healthy, and includes a Health Care Savings Account option that is absolutely worthless to anyone with a pre-existing condition. Diabetes wise, those accounts be would be depleted ASAP to pay for insulin; doctor's appointments, test-strips, pump supplies, RX's, and would cover only the bare minimum. 
AHCA also tax credits that only benefit the very wealthy, who most likely will not even be on an AHCA plan. Replacing ACA with a plan that increases costs and guarantees 52 million people will be without healthcare by 2026, (which isn't that far away,) IS NOT what's best for the American people.   

If lawmakers want to replace ACA/ObamaCare, then replace it with something better for the American people, NOT WORSE. 
Tomorrow Congress votes on AHCA and today I’m speaking up - and I hope you do too! 

Today is the day to make your voice heard - today is the day to call your Rep in Congress and tell them to vote NO re: (AHCA) The American Health Care Act, the Republican Replacement Plan for ACA. 

Whether you’re a fan of ACA/Obamacare or not, the Republican Replacement plan - AHCA is a horrific substitute that will cause 52 million Americans to be uninsured by 2026. 
The AHCA DOES NOT lower costs, it will increase them - whether you are insured by the plan or not.
The AHCA DOES NOT improve insurance, it negatively impacts everyone's health insurance across the board. 
The AHCA DOES NOT improve healthcare - it is detrimental to healthcare.
AHCA tax credits disproportionately benefit the wealthy - those who most likely would not be on The AHCA; the proposed medicaid cuts put 30 million children (including children with diabetes and children on state CHIP programs,) at risk, not to mention increased costs to the elderly, the economy, and adults with diabetes on medicaid and off, will be astronomical. 
No matter what side of the fence you sit, the American people deserve better than the The American Health Care Act.
Click HERE and send your message to Congress re: the Republicans AHCA bill  via DPAC. 
The Diabetes Patient Advocacy Coalition, (DPAC,) is a wonderful resource for the DOC and beyond, with excellent tips re: talking with those that are on the fence in congress - GIVE A READ
Call and tweet your Reps in Congress today, (and thanks to DPAC for making it easy,) because tomorrow Congress votes on AHCA.

FTR: When I called my congressman this morning, I told his aide that if my rep voted for AHCA, AKA., #ryancare/#trumpcare, (name association to the plan is important - use it,) 
I wouldn’t be voting for him on November 18th, 2018 - Election Day. 

Today, use your voice and use it loudly, because tomorrow Congress votes on our health!

Thursday, March 16, 2017

Magnificent Black Bean, Sweet Potato, Veggie, Lime Soup

I love to cook and I love to make soup - especially when it’s cold and nasty out. 
After 5 days of cold and 2 days of cold and nasty, you know I made soup last night! 
And I made one of my favs - Black bean, sweet potato, veggie, and lime soup. 
This recipe is a combo of several different ones I’ve found over the years - It’s a meal and it’s truly magnificent! 

After I made/ate my Magnificent BBSPVL soup, I posted its magnificence on facebook  - and a lot of my friends asked for the recipe.
So, here it is. 
Sidebar: I don’t use carrots in this recipe... usually. But In the past, and when I’ve had a couple raw carrots that needed to be used sooner rather than later, I’ve added them - you can’t go wrong either way - the choice is yours.

 Magnificent Black Bean, Sweet Potato, Veggie, Lime Soup - ENJOY  

1 Tablespoon of extra virgin olive oil - maybe a little more?? I don't know because I usually don't measure the oil - I should but I don't. I use enough to get a good sautée going without the veggies drowning in oil

1 large onion chopped - I prefer vidalia onion - but whatever you have on hand works

2 large sticks of celery, chopped - FYI: Celery has salt, which means you don’t need a super amount of salt for this soup

1 sweet pepper, any color your want - I used yellow, because that's was what was in my fridge

Jalapeno - The amount depends on you - but I HIGHLY suggest you start slowly and use sparingly. A little bit goes a long way. Start out with a quarter jala, chopped
If you prefer another hot pepper, go for it! 
Also, you can use substitute sriracha sauce, instead - it's awesome!  
And if you don’t like hot peppers, - DON”T USE THEM

2 cloves of garlic, chopped

1- 2 tsp. ground coriander (less or more depending on your taste) 

1 -2 tsp. ground cumin (less or more - depends on your taste)

1/4 tsp of turmeric 

1/4+ tsp cracked black pepper

1/2 tsp of oregano 

 1 tsp of apple cider vinegar

Himalayans sea salt to taste  - your salt requirements may vary

2 bay leaves - 3 if they are small leaves

1 large sweet potato, peeled, cut into half and or one inch chunks

2 cans (15 oz. can) black beans, rinsed and drained (I use Goya low sodium beans) 

4 cups vegetable or chicken stock (bought or homemade - your choice)

juice from 1/2 a small lime fresh

Chopped Cilantro and Italian Parsley - as much as you want
Diced avocado or guacamole  

1. Rinse of your beans until there is no more foam, and leave in the colander until ready to use. 

2. Peel and chop your sweet potato (you can use a food processor to chop,) into half and or one inch chunks and put aside until needed.
Sidebar: You can buy sweet potatoes already diced -Target, Trader Joe’s and other grocers sell them that way in and they can usually be found in the fresh refrigerated veggie section. 

3. Chop your onion (I prefer sweet onions,) and celery, saute both in olive oil, on medium low for 7 or 8 minutes. 
4. Immediately add 1/2 of the cumin, coriander, sea salt and oregano to the onion/celery mix and stir baby, stir. 

While the onion/celery are sauteing, chop your sweet pepper, your garlic, and a very little bit of your jalapeno. Add five minutes later, add along with the garlic 

6. Wait a few minutes, add the 4 cups of veggie broth, black beans, bay leaves, (bay leaves help re: remove the musicality from the beans,) and chopped sweet potato, the remainder of the spices to the mix. Stir and simmer on medium for thirty minutes. Occasionally stirring things up. 
Sidebar: Visually, look for gentle bubbling and foam from the beans. 

7. After 30 minutes, check to see if the sweet potatoes are soft, if so fish out the bay leaves, ASAP. 

8. Then, take a slotted spoon and removed 3 drained cups of beans and veggies, put aside in an empty bowl. 

Take an immersion blender ( IF you don't have one, get one - it will change your life,) and place it right in the soup pot and blend. 
If you don’t have an immersion blender, you can use a large measuring cup to remove the contents in the pot into a regular blender. That option gets messy and the soup is hot - BE CAREFUL!

10. After blending, add the 3 cups of strained veggies and beans back in the pot, squeeze 1/2 a small lime into the soup, add the tsp of apple cider vinegar, give everything a good stir and simmer on low for 10 minutes. 

11. Chop the fresh cilantro and Italian parsley and wait. 

Lastly, pour some delicious soup in the bowl, sprinkle copious amounts of chopped cilantro, Italian parsley, some more spicy pepper deliciousness, avocado or guacamole and enjoy!

FYI: If you make the soup too spicy - add another teaspoon of apple cider vinegar and a tsp or two of honey to the soup pot - trust me, it works! 

As far as carbs and fiber counts - I don’t have an exact number. 
I usually bolus between 28 and 35 grams of carbs for this soup, because I find I need more coverage with legume based soups -your diabetes may vary~ 

**The ingredients I used to make this soup were dairy and gluten free. 

Monday, March 13, 2017

#Blizzard2017 - A Diabetes/ Other Essentials Checklist

But thanks to Eat This, Not That, for the photo/nutritional breakdown of
these Blizzards~
#Blizzard 2017 is on the way, which for many on the east coast is also a Nor'easter/blizzard combined. This dynamic duo makes for bitching waves; tidal flooding (YUCK,) and crazy winds and snow - all of which are supposed to arriving tomorrow. 

So here’s my Blizzard/N’oreaster Check list - and please feel free to add in the comments section if I've missed anything!

Please make sure you have EXTRA of all of the following: 
  • Insulin, diabetes supplies, and meds 
  • Batteries for your insulin pump, flashlights, and electric candles
  • Candles, including electric (CVS sells them,) candles, and flashlights
  • CASH
  • Bottled water
  • Juice boxes for lows - make sure to keep a few by your bed (next to a flashlight and a bottle of glucose tabs,) incase the power goes out. The last thing you want to do during a middle of the night low is fumble around without electricity in search of juice boxes. 
  • Warm, clean socks 
  • Toilet paper
  • birth control because storms = baby booms 

  • The forecast calls for wine, purchase accordingly
  • Chocolate  - red wine reasoning applies to any and all forms of chocolate/comfort foods
  • Bread, eggs, and milk because when there’s a snow storm, french toast mania happens 
  • Copious amounts of cheese and peanut butter - no explanations needed
  • If you’re worried about the power going out and have an electric stove, (gas usually still allows for stove top cooking, even if the power goes out,) make you have lots of granola bars, PB&J supplies, fruit and other non perishable items on hand
  • If the power does go out, make sure to have cooler that you can put snow in to keep refrigerated food in
  • Any unopened, refrigerated insulin can be kept in a lunch bag cooler with freezer packs and or placed in Frio packs.
The following are also INCREDIBLY important: 
  • A diabetes to-go bag filled with 10 days worth of diabetes supplies/medications, packed and ready to go, just in case
  • Leave faucets dripping to prevent pipes from freezing
  • A fully charged Power Stick to recharge your phone and iPad if the power goes out
  • Space heaters and generators
  • Again, the forecast calls for wine, purchase accordingly
  • A great book to honker down with and warm fuzzy PJs. 

Thursday, March 9, 2017

Dear Jason Chaffetz, If My t1 Diabetes Cost As Much As A New iPhone...

Dear Jason: 
My constituents don’t pay for my type 1 diabetes either - I do 
Actually, I don't have any constituents, but if I did, I'd remember that I work for my constituents - and not just those in my state, but all those in my country and no matter which side of the political fence they sit.
I'd remember that they voted me in and that those same constituents can vote me out. 

Your insensitive asinine remark about Americans choosing between the latest iPhones and investing in their own healthcare really pissed me off. 
I'm invested in my own health care -I don't have a choice not to be! Every American is - who the hell are you to say that they aren't?!
Jas, you have no clue about health care costs because you don't have any. 
I would love it, if you wrote and sponsored a bill stating that every member of Congress and Senate go on the same plan as ACA or the Republican Replacement plan - which one would you rather have? 
If that clause was factored into the Republican Replacement Healthcare plan, you can be sure it would be much better than what's currently in that unmerciful plan. 

Dude, I dream of the day when my yearly diabetes costs equalled the cost of new iPhone - I kid you not @jasoninthehouseTHAT WOULD BE HEAVEN ON EARTH.

Hell, I’d settle for my monthly diabetes costs equaled the cost of my current ATT data plan, which equals $106 per month for unlimited data. Sweet data plan or sure, but I was grandfathered into it  - YAY ME. 

Honestly Jason, If my t1 diabetes cost as much as a new iPhone, I wouldn’t be up at night worrying about the cost of diabetes. Costs like (but not limited to,)  insulin; test strips, insulin pumps, Doctors bills, monthly premiums and miscellaneous RXs.

If my diabetes cost me as much as a new iPhone, my bank account would have a lot more zeroes in it. 

If my diabetes cost as much as a new iPhone, my anxiety levels would be even keeled and my stress levels would be down - thus my blood sugars would be better with less effort and less insulin. 

Stress costs a boatloads. Staying healthy is stressful and paying for health insurance is even more stressful - you don't know that because you don't actually pay for your health insurance, but TRUST ME, IT'S FUCKING STRESSFUL. 

As of late and thanks to what’s going on re: the Republicans trying to replace ACA (and other things like the EPA, Dept of Education, ETC,) I’m stressing, BIG TIME. 

But back to your iPhone fiasco, statement.
If my diabetes cost as much as a new iPhone, I wouldn’t have to fight with CareCentrix every three months to get the proper amount of test strips. 

If my yearly pump supplies cost as much as a new iPhone - I’d be whistling fucking Dixie.

If my 2015 deductible equaled the cost of a new iPhone, I would have met it long before I did. 

If my diabetes cost as much as a new iPhone I’d have peace of mind and a busted pancreas, instead of anxiety and a busted pancreas. 

For the record, @jasoninthehouse,  I finally bought a new 6+ iPhone in December of 2014 - just as my second hand, 5.5 year old iPhone 3 was starting to die. 

Yeah Jason, I wish my type 1 diabetes only cost $749 a year, plus, $39.96 for an iPhone case and $106  dollars a month for voice and data. 
BUT IT DOESN'T. The cost for my healthcare is a hell of lot more and I've been paying through the nose!
Except, this year I signed up for ACA and holy health care Jason, the difference is HUUUGGGEEE. 
I'll tell you all about it in my next post, where I talk about my pre ACA, post ACA insurance cost breakdown. 
Until then, #saveACA, start paying for your own healthcare and iPhone, and get off your high horse! 

Kelly Kunik
Person with t1 Diabetes &  Diabetes Advocate 

Wednesday, March 1, 2017

Interesting Links On The Interwebz - Some Diabetes Related, Some Not

Sharing some interesting links on the interwebz, some D related, some not. 

Shoutout to the Chicago Tribune for recently publishing the article: Dealing With Diabetes Distress. Not only did the article acknowledge and validate Diabetes Distress, they educated the public by shinning a spotlight on it. 

Does your oven pose a serious threat to your insulin pump and or CGM by way of an induction hob inducing magnetic fields? 
Checkout THIS informative article by JDRF, UK to learn more.

The American Diabetes Association has published a new retinopathy position statement and it’s good news

There’s a #MarchforHealth happening on April 1st in DC and various cities across the country. Want to learn more and participate? of course you do! 
Here’s the LINK! 

I love instagram, I have an instagram account, and as of late I’ve been slightly obsessed with pie maker extroidinare, @Jojoromancer’s account. 

I've also become obsessed with Skinny & Company's coconut oil products. 

In February, two of my articles were published over at Mango Health
The first was all about “taking your diabetes to work,” and the second focused on purchasing whole, healthy, organic, pesticide food without breaking the bank!
I hope you l dig! 

My paper focusing on the word choices that healthcare professionals use when interacting with their patients and used to describe people living with diabetes, was published in The Plaid Journal.
 I’m incredibly proud and honored and hope you will give it a read!

Rick Phillips is a fantastical advocate and friend and his post re: low blood sugars and being a "prick"  is both honest and genius. IT! 

Travelbetic has shares how people with diabetes can experience the U.S. National Parks by obtaining a free travel pass. Read all about it, HERE. 

Mark your calendars - the season 9 premiere of Ru Paul's Drag Race, is set for March 24 at 8/7 c. "Werk It!" 

Lastly, tonight’s #DSMA chat on twitter (Wednesday night, 9pm, EST,) is an important one!
Diabetes Advocate, Blogger, amazing chick, Heather Gabel will be hosting. 
Read the deets below and in Heather's own words!   
"Calling all friends who #dsma! Tomorrow night I will be hosting a special #DSMA twitter chat. I am a teaching assistant for a class of 111 undergrad students and will be lecturing Thursday on "When Healthcare System Fail." I assigned them homework to watch the twitter chat and take screenshots of the tweets that resonate with them or challenge their thinking. It would mean the world to me if you could pop in and educate these healthcare professionals in training. Join us on twitter tomorrow at 9pm EST! Below are the tentative questions I'm planning to ask! 

Q1. What do you see as your primary role as a patient within the healthcare system? #dsma 
Q2. How would you categorize/describe yourself as a patient? (Ex: Sick & Savvy, Online & Onboard, Casual & Cautious, etc)? #dsma
Q3. What is the most common misconception about diabetes you see healthcare providers make? #dsma 
Q4. Have you ever needed more than you were able to get from a healthcare provider? Explain? #dsma
Q5. Why do you think community-run events/services like #dsma are needed by people with diabetes? #dsma 
Q6. Healthcare systems sometimes fail to meet patient needs. What can you do to make sure you and others like you get the care you need? #dsma 
Q7. If you could talk to a classroom of future healthcare providers, what would you tell them? #dsma 
Let me know if you think a question needs to be adjusted. Can't wait to hear your responses!"