Thursday, December 1, 2016

2 Months of Insulin = 4 Bottles & $955.13


Hard for me to share this pic, but in order to for me to encourage others to share their experiences so real change can occur re: affordable insulin for all, I have to do the same. 
Backstory: I'm good - I'm sharing because things have to change when it comes to insulin prices – for people with and without insurance.

Back near the end of October, I realized I'd finally met my yearly deductible and my insulin would now be free. 
My Dr. sent over my RX, and 2 bottles that would have cost $517.75 out of pocket, cost me $0.00. 
BUT 10 days later I realized that the RX was for the wrong amount. 30 units a day, instead of 60. BIG DIFFERENCE. 
My Dr's office called in the proper RX and it was filled on the November 18th. 
4 bottles (plus the two from October,)  until the end of the year.
 I thought I'd have one more "free" refill in December that would be covered 100%.  
 Unfortunately, my insurance says that my next refill is on January 2nd, 2017 - and it’s out of pocket.
 I'm thoroughly confused and I've spoken to my Pharmacist twice about it. But according to my insurance company's D math - that's the date. WTF. 
I'm lucky - I have samples of unopened insulin sitting in my butter compartment, and courtesy of my Dr.

Those samples save me lots of out-of-pocket - having them makes a huge difference in the cash I can actually keep in my pocket – I am blessed that my doctor provides me with them and I know it.
FTR, I will be calling my pharmacy at the end of December to see if they can push another insulin RX through before the end of the year. - fingers crossed, but at least I have lots of back up.
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4 bottles of insulin - a two month supply in total, of a drug that literally keeps me alive and that would have cost me $955.13 in total, or $238 per bottle, WITH INSURANCE - had I not met my 2016 deductible thanks to wrist and hand surgery. 
I paid $0.00 because as I've mentioned several times, I've met my yearly deductible.

$238.78 a bottle for fast acting insulin (FTR, the name of the insulin is blacked out because my insurance charges me the same amount of money for Apidra, Lily, and Novalog,) insulins that are no longer on patent, but whose prices have gone up exponentially since 2002. 
$5,730.78 a year out of pocket for insulin, (probably a bit more because my RX pricing goes down the closer I get to my deductible,) for my/our elixir of life. 
I haven't even included test strips, or my pump supplies.

And I’m one of the lucky ones.
1. I have insurance
2. My Endo provides me with generous amounts of life saving samples of the drug (insulin,) that keep me alive, because he’s appalled at what my insurance charges me for insulin. 

I am so grateful to and for him. 

And I am so angry.
Angry that in the United States, insulin prices to go up for a multitude of reasons . 

Here's what I told the Lilly reps when I met with them privately in October to discuss in cost of insulin.
SIDEBAR: Kudos to Lilly for reaching out and meeting with Advocates one on one.
They were the only insulin company to physically meet with me on the east coast and hear my wants and needs - And I appreciate that very much .
They also met with others in the DOC around the country, re: insulin pricing. 

I told the folks from Lilly that I don’t want to demonize pharma or the companies that make insulin and other lifesaving drugs, because I don't.
 I'm not against profit and I know what companies who make insulin have done for nonprofits and people with diabetes.
But things must change because people can’t afford the very drug(s) that keep them/their loved ones alive - with insurance or without. 
And I DON'T CARE WHOSE FAULT IT WAS/IS - I WANT IT FIXED - And I will remember who led the charge to make things right. WE ALL WILL - every single one of us living with diabetes.
I stated that I don’t want hear about the Affordable Care Act, because insulin prices have been going up since 2002 - long before the ACA came to be - stop blaming blaming OBAMA. 
I mentioned that insulins that have long been off-patent, cost most of us more now, then when they were new. 
Insurance companies blame pharma, pharma blames Pharmacy Benefit Managers, PBMs blame everyone else. Toss in restrictive state laws and it becomes a vicious circle of blame. 
There’s enough blame for everyone to go around - and at this point, all parties involved need to stop pointing fingers and make things right.

Insulin Patient Assistance Programs help, but they don’t help enough. 
Those programs  don’t always provide the patient with enough insulin and many don’t qualify for the programs, let alone know these programs exist - see the link to the Diabetesmine link in the article below for all the reasons why. 
Also, these programs take time and paperwork. 
People with diabetes have enough damn paperwork. 
We spend countless hours on the phone with our insurance companies, our pharmacies and our Doctors. 
Nine times out of 10, we are the ones who catch costly mistakes made in our insurance billing - and it takes months to right those costly wrongs. 
And when you need insulin, you need it ASAP and everyday - waiting isn’t an option.
Try explaining to your insurance company about's tile floors that shatter glass insulin bottles, or why you suddenly need more than your normal amount of insulin due to harmones, the flu,a stressful patch at work or within your family, etc. 
They don't get it and they won't pay for it. They make you pay.
Click HERE for a breakdown of various insulin assistant program links/pros and cons. 

A meeting took place in few weeks ago with Pharma and Advocates in D.C came together re: Insulin pricing. 
Unfortunately, I didn't receive an invite to the meeting, but Diabetesmine wrote and excellent post on the meeting, and  I encourage you to read it
It’s comprehensive and does a beautiful and detailed job of explaining the big picture. 

For those of us who didn’t attend the Insulin Roundtable meeting in D.C. and for those who did, there are many ways your voice can be heard. 
For starters, pick up the phone and call your state lawmakers and share your story. 
Use the #DiabetesAccessMatters hashtag on Social Media. 
Call your insulin companies up and in nice, authoritative, calm, and kind voice - tell them your needs and your issues with insulin pricing. 
Get up dates from diabetesPAC  and see what diabetes issues are front in center in DC.
Sign the American Diabetes Association Petition to Stand Up For Affordable Insulin.

It’s easy, free and it can only help.
We all must come together and share our struggles about living with diabetes and the cost of diabetes, in order for change to happen.

Monday, November 28, 2016

Post Election Funk, Fear, Pulling Myself Up By My BootStraps & Forging Ahead

Because the past few weeks has been hard on our whole nation - but I'm forging ahead with a vengeance. 
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Post election funk is real and it's scary - it makes focusing hard- writing and blogging even harder. 
I’m scared about the future, my health insurance, the cost of being a person living with a chronic illness, and the ever growing division in our country. 

I know we’re not supposed to talk politics in the DOC - but I can’t explain why its been hard for me to be present in the DOC without mentioning our our presidential election. 
After the election many of us took a break from social media, television and the likes there of - including me - and as much as I hated to do it - I needed too. 
My heart and my head hurt and still do. I’m mad at how the election turned out for many reasons -as a woman, as a person with diabetes, living with a pre-existing condition, as an American who has always voted as an Independent and never straight down party lines, who has always done research on what and who I was voting for. 

I'm scared, angry, and frustrated that fake news is accepted as fact. 
I'm scared of the hate I see others express for those who are different  - and I want it to stop instead of it being encouraged. 
I'm angry that opposing parties demonize one another to the point it's now damaged and fractured our country. 

Instead of feeling empowered - the post election vibe made me feel powerless and scared - two words/feelings I despise. 

As a Diabetes Advocate I’ve learned to use my diabetes voice and become empowered in the process - and now I must take those same DA super powers and develop my voice as a citizen of the United States - and I am. I’ve always been one to reach out to my Reps in Congress and the Senate - and I’ve tripled my efforts now - and I strongly encourage you to do the same!
Financially and health wise, 2017 was the year I was going to sign up for the the Affordable Care Act - and I’m not so sure if I should now.
My current health insurance rates up again in March and my deductible is high. 
Now that the Thanksgiving holiday is behind us - I plan on taking the next week and researching ACA and will keep you posted on my findings. 
Speaking of the ACA, you/we can register our support for the ACA .
Paul Ryan's office is conducting a survey hoping to show a popular mandate to repeal the ACA - but the survey can also be used to register support for the ACA. 
It's automated and quick and here’s what you need to do:
1) Call (202) 225 -0600
2) Wait for awhile (1-2 min) for a recording to start 
3) You will get prompted by the survey
4) Press 2 to participate
5) Press 1 to register your support for the ACA
It only takes a couple minutes and it’s a sure way for our collective voices to be heard!

I’m also mad that the presidential election in the United States had such a negative and powerful impact on the International Diabetes Awareness month - and yet I totally understand it, because I experienced it and talked with others in the DOC who felt the same way. 

Another focus shifter occurred a few weeks ago (the day before election day,) when I scheduled surgery for my right wrist and pointer finger for December 13th. 
My right wrist and finger really hurt to the point of having to ice both daily. 
I’ve met my deductible for 2016 - now’s the time to get it done.
I’ve spent a lot of time (but not nearly enough,) prepping for the time I’ll be off and I wish it was over and done with. 

I spent the past week traveling to be with my family for Thanksgiving. 
For the first time ever, I drove solo and almost 700 miles each way, to spend time with my family - and it worked wonders for my heart and spirit. 
For the first time in what seemed like forever, I laughed until I cried... and I jammed with people who are just as "Kunikal -The_Musical" as I am!  

So as much as I want a “do-over” for the entire month of November - diabetes and politically speaking - I'm working my ass off to pull myself up by my bootstraps and forge ahead with a vengeance - it's really hard and some days are better than others. 
So thanks for your patience and understanding - it means the world to me. 

Speaking of thanks, for as little as $5 you can send a beautiful and straight from the heart thank-you to a loved one/loved ones who makes your life with diabetes easier - and you get to support the Diabetes Hands Foundation in the process! 
Click HERE to learn more.

Also, here's the thank-you that Mr. Mike Lawson sent me - it made my eyes leak in a really great way!  


Speaking of forging ahead, I have a new article up on Mango Health on Chronic Illness Burnout, so please give it a read by clicking, HERE.  
The topic is timely and it’s straight from my heart - and my beautifully busted pancreas~

Monday, November 14, 2016

World Diabetes Day 2016

I apologize for the radio silence this past week - there was some stuff going on in my country, the United States - I’ll leave it at that. 
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Today, Monday November 14th, 2016 is Word Diabetes Day - I’ve lived with T1 for 39 years, and I’ve known (and loved,) many people who didn’t survive the diabetes dark ages - or whose lives were severely shortened because of those diabetes dark days. 
We are so damn lucky and blessed! 
I/we survived and are surrounded and inspired daily, by a global diabetes online community. A community that has our backs and keeps fighting for every single person living with diabetes on the planet.
November 14th is also the 125th birthday of Dr. Banting and I keeping thinking of how I wouldn’t be here (and neither would you, or someone you love,)  if Dr. Banting & Company hadn’t discovered insulin. 
And not just me - most of my immediate family wouldn't be here, because my late father was diagnosed with t1 in the early 1950s. 
If insulin hadn’t been discovered and if dad hadn’t had access to it- my father would have died as a very young man - and my branch of the Kunik Family tree would have a been a small twig. 
Same goes for my dad's two younger sister's who were diagnosed in the 1940s - they wouldn't have survived, therefore my cousins never would have been born.

Last night our friend Renza from Diabetogenic in Australia ,broke the news to those of us in this hemisphere, that Google finally dedicated a Google Doodle to our hero Dr. Banting. 
As long as I’ve been a member of the Diabetes Online Community - since 2007 to be exact. My blogaversary was on November 9th - lots of things were going down in the U.S. that day and I didn’t write about this year, but I digress. 
Back to the story, since I became a member of the DOC family in “07,” the DOC has been petitioning for a #WDD Google Doodle - and now we have one!

Dr. Banting and World Diabetes Day are Google Doodlefied! 
Today I will be doing my Big Blue Test , participating in the 5th annual, 24 hour World Diabetes Day, twitter chat #WWDchat16 for those of you who only speak in hashtags. HUGE thanks to Cherise over at DCaf - for making this chat happen!
 I will be hosting the 7pm to 8pm hour tonight :) 
I will make a donation to IDF’s Life For A Child, an d I will do my best to help as many diabetes orgs as I can. 

Speaking of diabetes orgs, Kerri over at sixuntilme has a wonderful breakdown of ways you can help others living with diabetes this month and every month - and how others living with diabetes can help you - click HERE, now.  

We are on this together - now and forever! 

Tuesday, November 8, 2016

VOTE!

Vote with your heart and your pancreas & get out there & VOTE!

Tuesday, November 1, 2016

November Is National Diabetes Awareness Month - Here's My T1D Footprint - What's Yours?

November is National Diabetes Awareness Month, (#NDAM, for those who only speak in hashtags) - a month where where we "bust diabetes myths and perpetuate diabetes realities," to those sans diabetes. 

And JDRF has created a very cool tool that calculates your t1D footprint. http://www.jdrf.org/t1dlookslikeme/

We spend so much time dealing with our diabetes - now we have an easy way to get our own personal breakdown of our D numbers to help us educate others - and to remind us of how hard we work!
What's your T1D diabetes footprint look like? 

Also, if you live with LADA1.5 or t2, you work damn hard, get your D stats, too! 
I haven't had a day off from my #T1D ind 14,246 days! 

Monday, October 31, 2016

It's My Diaversary: Today Marks 39 Years of Living With T1 Diabetes

39 years 
39 years with t1 diabetes - I can’t believe it because it doesn’t seem real - or that long ago - but it was a life time ago. 
39 years  - I was so little - diabetes was so big, we became partners not by choice, but by pancreatic and autoimmune circumstances, and together we forged ahead and continue to tackle the world the best we can.

Growing up with diabetes DID NOT ruin my childhood. 
There were challenging and tough times - but diabetes didn’t ruin my childhood - so don't you dare for a second think it did. 
Growing up with diabetes was.... different. 
There were good times and hard times. There were times I struggled with diabetes and times I thrived.
I grew up (at least in some ways,) and isn’t that the goal of parents - to see their children grow up? 
Speaking of growing up, I wish my mom was here today - because this day is about her too - and my dad, but I know exactly what she’d say. 
I would remind her that today was my Diaversary and she’d say something like: I can’t believe it. I can’t believe it’s been 39 years. 
And she’d get this look in her eye that always made me sad - and she’d say that my sister Debbie had such a rough time handling her diabetes - and that’s what did her in.
And how she was so glad that I learned to "handle things." 
And I would say “thanks ma,” and hug her tight. 
And I’d silently think to myself all the times I didn’t/don’t handle my diabetes well - I would think back to the times when my sister was so sick and I was so angry at the world ... and diabetes... and Debbie. 
But I would remind myself that like the lotus, I made it through the diabetes mud and muck, to grow and into someone who is still becoming. 
And then I’d think of my Diabetes Online Community family and all that we’ve been through together. 
And today - even though I’m feeling a bit melancholy, which is really effing weird for me, because usually I’m all about the diaversary celebration, I will find the joy in everything that life brings me - because I am indeed the girl who lived. 

***Speaking of the girl who lived and the woman who continues to become, next year I will celebrate 40 YEARS of living with diabetes - and I want to CELEBRATE  like a rockstar.
I want to do something BIG. 
Like really BIG. Like BIG TOP, BIG - and any and all suggestions from my tribe would be greatly appreciated. 

Lastly, every year I make a list of positives to mark this day and this year is no different. So here it is - 39 positives for 39 years of living with diabetes and in no particular order.
  1. Indian Summer Days
  2. Jeans that make my ass look magnificent
  3. DOC Meet-ups in real life
  4. A glass of red wine with pretty much any food group
  5. pickles as free food
  6. Warm ocean temps and awesome waves
  7. the smell of garlic sautéing in olive oil
  8. Good friends 
  9. reading a great book
  10. Concerts 
  11. Funny Farm Animal Rescue 
  12. The word “coconut,” because I love how the word rolls of my tongue. It's a happy sounding word and also, I love how coconuts taste. YAY COCONUTS 
  13. Warm sheets in the winter
  14. Cool sheets in the summer 
  15. Nailing carb counts
  16. Black leather boots, preferably italian black leather boots
  17. Watching/listening to my nieces and nephews perform - Also, hanging with my niece and nephews - I LOVE THEM ALL
  18. Running into your very first friend with with diabetes 30 some years after the fact and picking up right where you left off - all because of the Children With Diabetes, Friends For Life
  19. CWD, aka - Children With Diabetes, Friends For Life
  20. Friends children who ask you if you’re “little” or “big,” because they can't tell - and my friends children who have become my friends
  21. DOGS - because dogs are AWESOME
  22. The feeling of accomplishment when the DOC makes changes in the way others view people with diabetes 
  23. City lights
  24. Salt air
  25. The color Green
  26. The color blue
  27. The color Red
  28. The colors purple, yellow, orange and black
  29. Vanilla baked goods
  30.  All baked goods
  31. Ice cream
  32. Music - across the board and in all genres 
  33. That feeling after you get from reading someones blog post that makes you feel better and like you're not the only one
  34. belly laughs
  35. Great sex
  36. Traveling 
  37. Hanging with my big sister Cathy
  38. Martinis with girlfriends
  39. My friends and family.

Monday, October 24, 2016

Me + T1 Diabetes+ Weight Gain+ Insulin Resistance + Metformin ER =

A little over two years ago I started gaining weight - and no matter how much I walked, rode my bike, counted carbs and kept an eye on my plate - I kept gaining weight. 
AND IT SUCKED.
Some of my weight gain was due to me no longer having the metabolism I once had. 
Some of it was due to several rounds of cortisone in the form of shots ( thank you trigger fingers and CT,) and orally( I had a nasty upper and lower respiratory infection in May of 2015,) and the weight that cortisone brings to my person, 
And some of it was due to yours truly developing a resistance to insulin - which I'd had for a while, but which was now dialed up to 11. 

YEP, not only do I not produce insulin, hence the whole, me being a t1 since I was a little girl, but I’ve also become insulin resistant - which I’m told happens after decades of living with type 1 diabetes. YAY ME!

Another signature Kellyism - cortisone tends to sticks to my body for months at a time, requiring me to shoot up a ridiculous amount of insulin for weeks and taking months and months to get back to my regular basal rates.

I’ve figured out the cortisone/insulin dance like Rockstar and I’m not afraid to increase my basals to maintain great blood sugars on cortisone - but I hate that cortisone sticks around in my system for so long. 

But enough was enough and last fall and I started walking between 9 and 15 miles a week - and the damn scale kept going in the wrong direction - and my A1C barely budged. 
And wasn't like I was eating Ben & Jerry's every night - I wasn't. 

Gaining weight and working so damn hard to lose it without success made made me frustrated and depressed. 
On March 15th, 2016, I went to my endo appointment and Dr. J and I had one of our heart to hearts -  I was having hand and wrist surgery in May and I didn’t want to gain any more weight while I was recovering. 
Dr. J mentioned Metformin ER, I mentioned my hair and my fear of losing it. 
Sidebar: The last time I'd given Metformin a try was in 2008 - and I noticed clumps of hair on the carpet. Even though I'm a shedder when it comes to my hair - the clumps on the carpet were beyond normal and I stopped taking Metformin.
And my hair stopped falling out in clumps.

And then I started to cry. 

And Dr. J was great - he told me that we could try some injectables, but that because I was t1, my insurance most likely would not cover them. 
He told me that Metformin ER was different and better than regular metformin - and that price wise, it was cheap. 
Dr. J also felt that it could jump start my metabolism, and it didn’t have to be permanent.  
So we made a deal - I would go on Metformin ER ( Metformin Extended Release - different form the regular metformin I’d tried 8 years earlier,) and if my hair started falling out, I’d stop, ASAP - and Dr. J and I would go to/create plan B. 

I drove home, picked up my RX and started my first round at dinner. 
Sidebar: On March 16th, I received a cortisone shot to pop a ganglion cyst on my palm - I convinced the Dr. to use 1/2 the normal amount of cortisone and twice the amount of saline. The cyst was popped and my blood sugar was only elevated for two weeks.
And on March 20th I tore my quad muscle - and it hurt like hell.  

But back to the Met ER - the first few weeks on Met ER, there were rumbles in my belly for sure - but nothing I couldn’t handle and not nearly as bad as when I'd tried regular Metformin back in 2008. In two weeks the rumblings subsided for the most part.
I also noticed that Metformin ER made me feel fuller, quicker. I’d forgotten about that side effect. 
I travelled for half of April and by May 17th (the day of my hand and wrist surgery,) I’d lost 4.5 lbs. 
By July I was down 9 lbs and I didn’t gain weight while I was in Florida attending Children With Diabetes Friends for Life - and yes, there were some nacho and margarita moments in Florida. 

On July 17th I went back to my Endo - while my A1C had only gone down by a fraction (thank you nasty sinus infection that stayed in my system from late June through mid July,) my labs were great, My weight was down by 9 lbs and my Endo was thrilled. 

Dr. J increased my Metformin ER to 1000 mgs, twice a day and told me he was proud.

The increase caused my stomach to react and the rumblings returned, but were gone quicker the second time around.
In August I bought two new bathing suits - including a red one that made me feel like WonderWoman!  

September rolled in and I was 12 lbs down - and according to my hair dresser (who is also a dear friend, brutally honest, and always has back,) the hair on my head is staying put. 
Sidebar: I take daily biotin and B12 supplements because biotin promotes hair and nail growth and if your b12 is low (which can be one of the side effects of Metormin,) your hair will fall out. 
As of today - I’ve lost 14.5 lbs and my daily insulin intake is down between 9 and 15 units- steadily decreasing in increments since March. 
The most recent insulin decrease happened a few weeks ago, when I started noticing that my daily, 24 hour pump totals were in the mid 30’s. 
5 days in the mid thirties range, followed by a bump up of a couple days in the 40s and then back to the mid thirties. YES, there were a couple middle of the night, kick my ass lows (and one nasty high,) while I readjusted my basal rates. But I did what I had to because that's what people with diabetes do. 

Tomorrow is my Endo appointment - I’m hoping for good labs and a decrease in my a1c . 

And whatever happens, happens - I'm going to keep moving forward.