Thursday, January 12, 2017

It Doesn't Matter If You're Red Or Blue, Pre-Existing Conditions Don't Care

It doesn’t matter if you sit on the red side of the fence or the blue - pre-existing conditions don’t care. 

It doesn’t made if you’re a Democrat, Independent, or Republican - pre-existing conditions don’t care. 

Do you have a broad interpretation of The Constitution or a narrow one?  
Doesn't matter, pre-existing conditions don’t care. 
But here's the thing, insurance companies do - and thanks to the Senate voting to repeal ACA, soon insurance companies will be able to deny you and your pre-existing condition(s). 

If you have a diabetes... or a heart condition, a leaky gut, thyroid issues, blood disorders, cancer - If you have ANY health condition, you may soon be penalized and punished for it, because at 1:30 this morning, 51 Senators agreed to repeal ADA and the pre-existing condition clause was put back on the table.

And if you don’t have a pre-existing condition? 
A. Good luck with that - genetics and age have away of sneaking up on you when you least expect it. 
B. If you fall into any of the following categories - your lives will be changed for the worse: 
  1. Pre-existing conditions
  2. You have young children on CHIP
  3. You have young adult offspring currently on your health insurance plan
  4. Take birth control meds (WOMEN)
  5. If you get your insurance through your employer, the same rules (and more,) all the new will apply to you, too.
 Insurance companies will, if ACA is successfully repealed, be able to deny you or your loved ones insurance coverage for all of the above. 

Best case scenario, they will do what they did before ACA, make you wait a year before they agreed to pay for anything having to do with your pre-existing condition. 
Every drop of insulin, every cholesterol pill, every viagra pill, or chemotherapy treatment will come out of your pocket. 

Worse case scenario. They can legally refuse to cover you because you have a pre-existing condition. 

We have individual voices, and collectively they can are powerful – we must use them to protect ourselves and others living with pre-existing conditions!

Click HERE and "ACT" now to protect every single person living with diabetes and other pre-existing condition in the United States: 

DiabetesPAC makes it incredibly easy for you to email your Reps directly from the above link
DPAC provide a letter template with space for you to tell your own story – and as long as you know your ZIP Code, your email goes directly into your Reps inbox with the click of a button.

Also, pick up the phone and call (and tweet) your reps in the Senate and Congress, NOW and tell them how you feel about bringing back the pre-existing conditions clause, the repeal of ACA and all that we stand to lose.

 We have a hell of a fight ahead of us and #WeAreInThisTogether!

Wednesday, December 21, 2016

Holiday Travel: The Time I forgot My Medical ID 300 Miles Into A 700 Mile Road Trip.

I started writing this article about 10 days ago, then I had surgery.
Most of my stitches were removed to day - more on that later.
Anyway, here’s what happened to me on my Thanksgiving road trip and some disclosure. 
On the drive home and wearing my Lauren's Hope bracelet the Saturday after Thankgiving, somewhere
in North Carolina - I-40 
I love to travel. 
I’ve been to a boatload of countries and an “OK” number of states. 
I fly a lot and as much as I hate airports, I can navigate them - for the most part. 

Trains? I’m cool with trains - I love taking trains. 

I’ve gone on lots of road trips in my life. Some good; some great, some neither, all memorable. 
But I’ve never actually done a solo -beyond my local tri-state area, road trip. 
Maybe it has something to do with my irrational fear of reading maps, maybe in a past life I became lost on a journey and never made it to my destination, maybe it’s because I’ve gotten lost and ended up in some gnarly parts of cities and states where I thought no one would ever find me. 
Or maybe it’s because I’m a big effing baby, but whatever.

Drop me in the middle of an unknown city on foot, and I can figure it out no problem. 
Tell me I have to drive to and around a city I’ve never been to and I start to get anxiety. 
Needless to say, GPS navigational systems have been a game changer for me - I don't worry about getting lost anymore.
In September I was invited to my cousins in South Carolina for Thanksgiving and I decided I was going to drive instead of fly. 

I was going to bypass the mess that is Philadelphia International Airport at Thanksgiving, and get out of my comfort zone re: driving long distances by myself.

Yep, I was going to drive the between 600 and 700 miles each way solo because I'm a big, brave, grownup lady.

I mapped out my route (thank you talking Google Maps,) for the more than 600, but less than 700 mile journey each way, booked my hotel, (could not deal with doing it all in one day,) had my car checked over, and marked the departure date on my calendar. 

The night before the trip I finished packing everything. Clothes; extra diabetes supplies, gifts for my cousins children and a special bread from a local bakery that shall remain nameless. 
Then I put my laptop/charger in my work bag, placed my Lauren’s Hope medical ID bracelet next to my charging phone and went to bed.
The next morning I loaded my car up with my luggage, computer bag, bread, and a cooler packed with apples, water, kind bars, and baby carrots. 
And after several false starts, I pulled out of my driveway at 10 a.m.
Cut to 4:30 pm and me checking into my Richmond, VA hotel and settling in my room. 
That would be when I noticed I wasn’t wearing my ID bracelet. 
No big deal, I figured it was in my makeup bag... except when I checked it wasn’t. 
And I got nervous. 

Did I lose it or was it still at home? 
What if something happened while I was driving to The Carolinas ?

I remembered a time when I hated wearing medical IDs and would only wear one when I traveled. But things change and we live and learn. 

I tried not to think about it and went down to the lobby to meet a friend for dinner.
The next morning I was on the road by 11 a.m. and all was going well - Thank you talking google maps! 

FYI: When you're drive long ass distances by yourself you have a lot of time to think. 
You think about the beautiful scenery, and you think about your life and the roads not traveled, blah, blah, blah. 

And you keep thinking about traveling the day before the busiest travel day of the year and the "what if’s" of not having your medical ID bracelet on your wrist. 
Basically you become hyper focused on all the horrible things that can happen on the road, at a rest stop, anywhere and not being able to let anyone know about your diabetes, etc. 

FTR: I have D and non D medical info noted on my Lauren's Hope Medical ID bracelets. 

When I reached I-40 I had a 140 miles to think about all of the above before I needed to consult with Google maps - and the more I thought about not having my bracelet, the more uncomfortable I got.


My somewhat irrational fear of driving almost 700 miles by myself was replaced by the very real fear of not having my medical ID on my person.

I was mad at myself for forgetting my bracelet.

And I was scared.

60 miles into the uninterrupted 140, I stopped for gas. 
Then I went through my email contact list and called my contact at Lauren’s Hope and left her a message. It was my “hope” that she could overnight a bracelet to my cousins house - if that was even a possibility on their end. 

120 miles into the 140, my contact called me back and I pulled over to the side of the road and told her my dilemma. 

She listened, calmed me down, and told me that they overnight jewelry all the time. 
I gave her my cousins address and she told me that she’d send me a gold colored steel cuff. 

I felt better and I felt safe. 

After getting stuck in crazy traffic the last 40 miles of my journey, I made it to my cousins house, the Tuesday before Thanksgiving at dinner time. 

The next day, at 1pm, EST my Lauren’s Hope bracelet arrived via FedEx - which impressed me on many levels because hello, it was the day before Thanksgiving and who the hell wants to drive in that mess.
Also, I wish I could have given the FedEx person a hug, but they didn’t ring the doorbell - which I understand, because THANKSGIVING WEDNESDAY.

Anyway, I wore my bracelet on my wrist for the rest of the trip.

My Thanksgiving was wonderful and happy and my family made me laugh like crazy . 

The trip back home stretched out over two days and except for the crazy traffic on 95 once I hit Baltimore - everything went off without a hitch. 
I’m confident that I can drive anywhere now - as long I have a talking GPS at my fingertips. 

And I’ve decided to leave one of my LH medical ID bracelets ( I own 4,) in my locked glove compartment because I never want to worry like that again. 
I don’t want worrying about the what-ifs (diabetes or otherwise,) to hold me back from traveling and exploring life.   

Disclosure1: Lauren's Hope didn't charge me for my bracelet. 
I told them I was going to write about what happened because I was so damn grateful and felt/still feel that if it could happen to me, it could happen to you and knowing that there's a solution is key.
 I didn't expect anything in return, but it was nice gesture and greatly appreciated.  

Disclosure 2: I own four LH bracelets (3 before Thanksgiving,) and after my road trip, I decided to become a LH affiliate.
That means I will get a very small percentage if you place an order with LH, via clicking on their here.
Any money earned will go towards domain renewals for both diabetesaliciousness and IwishPeopleKnewThatDiabetes.Org .

You can learn about LH affiliates program, HERE. 
You can read disclosure policies of this blog, HERE

I never want you to think I'm not being honest, so I'm telling you upfront. 

Lastly, it doesn't matter to me where you or your loved ones get your medical IDs. 

What matters most to me is that you and your loved ones actually WEAR your medical IDs - and if you forget to bring yours on a trip or lose it while traveling, you're able to have a replacement sent to you within 24 hours. 

Tuesday, December 13, 2016

I Need A Hand

So...hand & wrist surgery on my other hand in a few minutes.
Any and all positive vibes would be greatly appreciated. 
Thanks guys! 

Tuesday, December 6, 2016

December Diabetes Reminders

As if people living with diabetes don't have enough to do without scrambling for end of year RX refills, dr's appointments, etc. But we don't have a choice -we must. 
January 1,2017 isn't only New Year's Day - it's the day our yearly insurance deductibles start all over again. If you've met your 2016 deductible or not - get those refills, tests, and end of year appointments done, ASAP!
And yes, it's a pain in the ass - but it's important!
The following is your December reminder(s) to refill your end-of-year prescriptions; look into getting new eye glasses, get fitted for orthotics, ( Medicare covers both orthotic inserts and one pair of "diabetic shoes, every year,) and most insurances cover orthotics (fully or partially,) if you have diabetes. 
Make sure your up to date on your pump, CGM, and tests strip supplies. 
Schedule and all last minute appointments and Lab RX/test requests for December, before your 2017 deductible kicks in. 

If you've met your deductible for 2016, December is time to order your new pump, if you're due. And once deductibles have been met and according to your plan, your RX medications may be reduced in price or on some plans, free.
If that's the case with your plan/plans, today would be a great day to call your doctors up and get your one-month prescriptions for December changed into three month RXs, fill them ASAP, and save some money in the process. 
Heads-up: It might not go exactly as you planned on all fronts - but it will still save you some money.
December is also a great time to stock up on insulin pump double/triple AAA batteries- most stores have batteries on sale this time of year - thank you Christmas/Hanukkah toys!

And not like we have enough to do, but December is also the time of year for many to research, pick, and choose 2017 healthcare plans. 

Ut's going to be a long and expensive winter, folks -and a little prep goes a long way~

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.
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. 
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. 
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!