Thursday, May 18, 2017

It's not about her.

She’s looking into her child’s eyes, scared, but she smiles wide. Her love for her child must be stronger than her fear. Her world is falling down around her but all that matters is she stay strong for him.

He didn’t deserve this diagnosis. Why? Why him?

She will take as much of the hurt and burden away as long as she can.

She will work hard.

She will take care of him every minute of every day.

She will cry in the shower.

She will cry after her husband sleeps.

She will cry in her car on the way to school, but keep make up and eye drops in her purse to hide the redness.

And when he is sick, she will close her eyes and sing to him. She will push down the fear. She will stay awake. She will not let him see her tremble.

When she draws the insulin she continues to push down the feelings. She pushes down the anger she has for a disease that is holding her child captive and the logical thoughts that tell her none of this is normal.

She tells herself over and over that this is all perfectly normal. Type 1 Diabetes is their normal now. She will not let it control their life.

She listens to the pharmacist tell her it’s too soon to get insulin. She has ½ a bottle left. Her stomach turns into a hard ball. Her throat closes. She wants to scream. She wants to throw her fist on the table. But instead, she is all business and is only focused on finding a solution. She calls the doctor. She calls the insurance. She is firm, but her voice cracks as she holds in the tears. He will get insulin. She simply has to fight. 

And fight she will.

She will always fight.

Her son is in the hospital. He has an ear infection and the insulin he is using is slow and antiquated. She sits in the corner, rocking methodically. Enduring. Willing the minutes to pass so tomorrow will be here. Watching her baby being poked with needles, and tubes inserted in various places…it is torture. There is no worse suffering for a mother than to see her child helpless and afraid.

She has two alarms set for the night, but she can’t sleep anyway. Her mind is a Ferris Wheel, turning the same thoughts over and over in her head. She has a meeting with his new school tomorrow. She will have to discuss his needs without scaring them. She will pretend that their normal isn’t scary. She will lie.

Two more of her babies are diagnosed. A piece of her heart dying each time. She wonders how she can walk upright when she walks with despair so heavy, at times it is staggering.

Every parent is held up thinking about the possibilities of their children’s futures. When a new diagnoses is in the mix, the future has blurry lines…there are so may unknowns. She can’t use their future as a crutch for today. She has to find the joy in the now.

She walks the hallways of each and every school feeling every bit the stranger. The parents talk about what worries them. None of them worry their child won’t wake up in the morning. They don’t know what she carries except the extra pounds on her waist, consequences of late nights stress eating waiting for lows to come up, and highs to come down. are forgotten. Insulin doses are forgotten. Sugar checks are forgotten. An alarm is slept through. The guilt weighs on her. She pushes it down to her toes. If it fills her up, it will make her bitter. She wants to radiate love, not bitterness, so she tries to release the guilt and let it fly away…but it’s so heavy. Guilt can’t fly. It will forever be a part of her.

Not the bigger part of her though.

She becomes a magician. She can turn frustration into serenity. She can turn loneliness into wellness. She can turn a bad day into a map for a better tomorrow.

She flips each feeling onto their head when things don’t go their way.

Things rarely go their way.

But her magic trumps the heaviness of the disease. Her smile overrules all of the darkness.

She always smiles.

She tells them she is sure all will be well. She never stops moving forward. Diabetes pushes her back when she is taken off guard, but she lifts her heavy feet and moves, and works, and tries, until everything is ok again.

Flipping emotions can take its toll.  There are days, few and far between, that she lets it all come to the surface. She releases all her complicated feelings through tears and fits of despair. She stomps her feet. She yells. She is angry at the world…

And then she pulls herself together.

And she smiles wide again.


Because it’s not about her.

It was never about her.

It’s always about them.

They are everything. They are her air. They are pieces of her soul.

What is the emotional toll on a mother with children with Diabetes?

No one will ever really know.

Because her love, strength, and determination softens every bit of it.

She has convinced herself that everything will be ok.

And they believe it.

And that, my friends, is all that matters.

(This is my 4th post for D Blog Week. See more info on it HERE.)

Wednesday, May 17, 2017

Blaming backfires.

Fault: (Noun) An unattractive or unsatisfactory feature in a piece of work or in a person’s behavior.

Fault: (Noun) Responsibility for an accident or misfortune.

Fault: (Verb) Criticize for inadequacy or mistakes.

We live in a world where everyone wants to find fault.

Things are going very wrong and to cope, we want someone to blame. Someone to aim our anger and frustration.

This has gotten out of hand online. There are those who blame and hate, who need little or no evidence to back up their assumptions. There are some who are not afraid to spew judgment and heated remarks over their keyboard, even though when face-to-face they would be kind and unassuming.

We hold on to blame like a security blanket. It stops us from seeing our own faults, and hones our focus onto circumstances and peoples' actions that are out of our control.

Finding fault seems to release us from feeling any fault of our own.

It’s a virus that has spread to the very core of our society.

As a result, people feel justified in their bitterness. “If someone else is responsible for all the bad in the world, then I can self righteously stand here and point, and hate.”

But what’s happening is that when one harbors hate, it can’t all be directed outwardly. It is something that lingers inside and changes the very fiber of who we are. We don’t need to be held accountable for our actions if our actions are given momentum from someone else’s wrongdoing.

Blaming others for our miserableness can only backfire.

The world seems to be spinning off its axis. Integrity and accountability seems to have all but vanished in the public eye.  And it’s bringing us down.

We cannot feel hate and leave ourselves unscathed.

Bitterness and blame are acid to our hearts.

There is another way.

Love. Kindness. Hope. Action. Respect. These are still important.

Diabetes isn’t going to go away. If we are miserable because of diabetes, it’s not diabetes fault.

The current healthcare climate isn’t going to change soon. If we are unhappy about the ways things are, we must incite change.

But remember, no one has ever changed their mind when they are being accused or blamed. Minds are only changed in real conversations. Those in which ideas can be brought forth and respected on both sides.  Change occurs when we put our souls on the table and talk about how we are feeling.

Our fears. Our hopes. Our confusion.

Blaming won’t solve our problems. Having a conversation beginning with "YOU NEED TO" isn’t going to get us anywhere.

We must find a way to be sincere again. Heaven knows, sarcasm has its place in our society…but sincerity has become something guarded…. something we share only with our inner circles.

What if every one of us became sincere in all our encounters?

What if we entered conflict wanting to talk with someone rather than talking at them?

What if conversations started happening and people actually began listening to each other. Two-way conversations seem to have become a rare commodity these days.

Sure there are idiots out there, but I’d venture to guess that there are many people being blamed for idiocy, rather than the true culprit, simply being uniformed.

If we could change the tone of the dialogue, we could change the world. 

It starts with us. 

It starts at home.

On a hunch I googled "Brene Brown blame" and found this piece of gold. Food for thought...

This is my post for day three of D Blog Week. You can find more info about it HERE.


Tuesday, May 16, 2017

Apathy and ignorance are what cost us the most.

What is life worth?

Insurance is a for profit business, so this is a legitimate question.

It used to be that things were billed according to minutes, or hours spent with a patient. What is one’s time worth? That’s a fair question.

It used to be that a medicine was priced according to production costs along with a specific profit margin. What did this medicine cost to make, and what is a fair percentage for profit? Also, a fair question.

But now insurance companies, doctors, and Pharma companies are asking, “What is the value of what I’m doing (or producing) for the patient community?”

Ouch. Again…what is life worth?

There is a video on Facebook of a man confronting his congressman asking, “Is it moral to see a human being drowning and ask if they can pay to be saved?” From what I understand, if a person shows up to an emergency room and has no money, he will be saved regardless.


If a person shows up to a pharmacy and asks for insulin, and has no money? That’s too bad. You can’t have it.

The hormone that your body must have to stay alive will be withheld from you if you do not have the means to pay, or in most cases, even if you do not have a current prescription. 

It only takes a few hours without that hormone to put you on deaths door. Insulin isn’t a luxury. Insulin isn’t plan B. Insulin isn’t negotiable when a person has Type 1 Diabetes.

Yet a pharmacist will say no.

Is it the pharmacist’s fault?

Does the pharmacist even know the difference between Type 1 and Type 2 Diabetes?

Does the pharmacist know if someone leaves without insulin, they could die within days?

Probably not.

Yes, our healthcare system is messed up in epic proportions, but I believe it is the ignorance that is costing us the most.

A month ago there was a new nurse filling in at the Jr. High.  I have never met her. I did not know we had a new nurse filling in sometimes. The lunch monitor saw my son eating sorbet for lunch. He knew that my son had “diabetes.” He went to this new nurse, who had never met my son, and told him that my son had diabetes and was eating an unhealthy lunch. What happened next is what’s important: This nurse called my son out of class and gave him a lecture on eating properly with “diabetes” and gave him no less than 4 pamphlets on the rules to living healthy with Type 2 Diabetes. She also told him the consequences of him not eating a healthier lunch.

This person is a nurse. She is in the medical profession. She is in charge if there is an emergency with my son at school…and she knew nothing of his condition, or worse, because he isn’t stick thin like my other Type 1 son, she figured that “Obviousy, he’s Type 2.” She undid years of my building his self-esteem in one conversation. 

Regardless...if medical professionals, insurance companies and most everyone else on the planet doesn't know what Type 1 Diabetes is…then all our worry and voiced concern is falling on deaf ears.

Apathy and Ignorance are costing our community much more than money.

They are costing us access to affordable healthcare, and tools needed to survive.

They are costing the Type 1 community lives. 

Type 2 isn’t even in my wheelhouse and I’m privy to enough information to know they are getting the short end of the stick every live-long day as well.

We are worried about the price of insulin yet many insurance companies ask us to prove our children, (or ourselves,) are still on insulin.

Insulin companies are hosting workshops to discuss ways to get around the system to pay less, and then upping their prices the next week 8.5%. The information from the bottom did not get to the top. And honestly, do they care?

What the actual hell?

Politicians tout that my children “deserve” their disease because of laziness and lifestyle. My boys were babies when diagnosed.

My son J, diagnosed at 8 months old.

My son L, diagnosed at 2 years old.

My son B, diagnosed at 5 years old.

Everything is backwards and education is lacking and my children are suffering because of it and if I could, I would roar a giant roar to stop the madness.


What is the cost of diabetes?

Emotional wormholes.

Fighting for the obvious.

Exhaustive educating.

Even still...we cannot stop.

We must not stop.

We must educate. We must stand up. We must write those in the government, and those reporting news, and tell our stories.

Sure, many are controlled by money, or lobbyist, and are playing the system to their advantage. 

But what if we gave up? What if we stopped advocating, educating…TRYING.

What would be the cost of that?

I shudder to even think about it.

Because I know that the life of my boys is worth more than apathy.

Please tell your story. Please try. You are needed.

It's time for change.

Monday, May 15, 2017

The Unexpected

After a Type 1 Diabetes diagnosis...

It is unexpected to find that blood sugars numbers are rarely in the place Doctors tell you they should be.

It is unexpected to find that one unit of insulin brought blood sugar down 50 points last week, and tonight, for whatever reason, one unit only brings blood sugar down 10 points. 

It is unexpected to eat an apple, weigh the apple, bolus insulin for the apple, wait 10 minutes to eat said apple, and not have a perfect blood sugar number.

It is unexpected that a day of swimming from noon to three leads to lows at midnight.

It is quite unexpected that after a Type 1 Diabetes diagnosis, patients and caregivers find they have to make multiple life or death decisions every single day.

It is unexpected that someone with Diabetes can’t just sleep without worry. Blood sugars fluctuate at night. There is no magic 6 hours off when one closes their eyes.

It is unexpected to find out that worry, weather, and illness greatly affect blood sugar numbers.

It is unexpected that even though Type 1 is an autoimmune condition, people blame children and adults for their Diabetes. Diabetes is a buzzword indicating lazy and fat. 

It is unexpected that I take blood pressure medicine that magically puts my blood pressure at a perfect level, and insulin does anything but with blood sugars.

It is unexpected to go to a doctor and listen to them blame you for the blood sugar numbers you or your child are having. It is unexpected that Diabetes is so complicated, and no two people with Diabetes are alike.

It is unexpected that we're told what kind of insulin we should use by a company that has never met us. 

It is unexpected that a disease that must be vigilantly focused on 24 hours a day 365 days a year isn’t automatically tied to some type of emotional help for patients and caregivers alike.

It is unexpected to find Chinese food doesn’t greatly affect one boy’s blood sugars, takes a moderate amount of work for another boy’s blood sugars, and is a complete disaster, in every senario, on another boy’s blood sugars.

It is unexpected that some schools would rather not have children with Diabetes in attendance on their campus because school nurses have now become a luxury.

It is unexpected that we have to fight with our insurance companies for something that can give us or our children a better quality of life, and potentially keep us or our children out of the hospital in the future.

It is unexpected to do everything exactly the same every day and every day get different results.

It seems as though Type 1 Diabetes is a synonym for the unexpected.

We’re thrown unceasing curveballs.

Nothing about Type 1 Diabetes makes sense. They aren’t 100% sure what causes it. They aren’t anywhere near sure what cures it. And insulin is a daily crapshoot.

How do we cope as a family?

Obviously, we expect the unexpected.  We try to take the curveballs with a stiff upper lip and move forward. We try not to take the numbers personally. We prepare for the worse case scenario every time we leave the house.

I have a child that has been living with Diabetes for 19 years.  He is 19 years old.

I have another child that has been living with Diabetes for 11 years. He is 13 years old.

I have a third child that has been living with Diabetes for 10 years. He is 15 years old.

Every diagnosis was unexpected.

The fact that we are doing all this work with the exact same insulin 19 years later is unexpected. I was told with every diagnosis a cure would be found in 5 years. 

I believe hope is a good thing. Being an optimistic person and giving up on a cure?…well…that was unexpected.

I want a cure, my children want a cure...but we'll settle for better.

The fact that Diabetes is still this much work, and this much worry, after all these years?

Man, that was really unexpected.

 (This is my first post for Diabetes Blog Week. Find out more information about it HERE!)

Thursday, May 11, 2017

On Lilly's unconscionable insulin price increase

There’s a story about a man who was worried about his wife. She was losing her hearing and she refused to go to the doctor. The man had a close friend who was a doctor and he asked for his advice. The doctor advised him to talk to her while her back was turned and then see how close he needed to get before she would respond. This would tell him how significant the hearing problem was.

The man returned home and sure enough he could see his wife across the house; her back turned to him, doing the dishes.

At the doorway he sang, “Honey, I’m home!”

The wife did not respond.

A step forward.

“Honey, I’m home!” 

The wife continued with the dishes. She did not respond.

A few steps forward.

“Honey, I’m home!” He said hopefully.

Again, no response.

Four steps forward this time.

“Honey, I’m home.” He said firmly, resolutely.

No response.

Taking three more steps, standing right behind her, he whispered, defeated, “Honey. I’m home.”

At which time the wife whirled herself around and yelled, “And for the fifth time. I KNOW!”

Sometimes, it’s hard to tell where the problem lies.

Apparently, Lilly Diabetes is having that problem right now.

They are looking outwardly at everyone else, blaming everyone else for the prescription pricing problems we face in the United States, when really; they have a serious problem of their own.

Their problem is they aren’t taking responsibilities for their actions.

“We have no choice. We have to work this way. The PBM’s made us. It’s how the United States Healthcare System works.”

But we all know Lilly Diabetes is a business. And the bottom line comes first. I don’t care what they say.

Last month I sat in a room full of Lilly executives and they looked me in the eye and made it very clear they know what a travesty insulin pricing is. They KNOW people are suffering. They KNOW it’s a problem. They sat empathetically and listened to our stories, tears in their eyes, nodding their heads. Saying they hear every word. There are individuals and families who can’t pay for insulin. People have died because insulin is too expensive…

Which makes yesterday’s Lilly Insulin price increase all the more disgusting.

The fact that they KNOW their actions are yielding unconscionable consequences, and yet…they continue on the same path with those same actions, taking no responsibility for the havoc that lies in its wake?


Blame the game, not the player?

Sorry Lilly, you agreed to play. You made a conscious decision to go out onto the field, and you are making a hefty profit because of it. Your agreement with PBM’s is advantageous for PBM’s, yes…but it is just as advantageous for you…. or you would not be playing.

Really, how much does it cost to produce a vial of insulin?

Humalog has been around for 20 years. It is not the newest model. It isn't the hope diamond. It is life support for millions of people with Type 1 and Type 2 Diabetes. (For my children? Take insulin or die: no choice.)

And Canada pays $35 a vial? You can’t tell me it costs more than that to produce a vial, or you wouldn’t sell it to them for that.

Lilly is taking advantage of the system in the United States. Do they glory in the loopholes? Do they revel in the fact that the government has done NOTHING to stop the gouging going on?

But it’s not Lilly’s fault. They can. If it is legal, and they can…why not? (#sarcasmfont)

When pricing its products, Lilly takes into account "the value they bring to patients and the healthcare system, as well as current marketplace conditions and the need to fund the development of the next generation of innovative medicines," (Lilly spokesman Mark) Taylor said.

They are pricing according to our desperation for life, and it makes me sick.  What is the value of life? Lilly is going to find out. How far can they go? They know we will go as far as we can to keep the ones we love alive, so they will continue their path.

They are a business after all. 

This entire insurance game needs to stop. A friend on Facebook: “We had a baby last year. Uncomplicated birth, the cash price was $3200. The hospital refused to let us pay that because we were insured. The insurance price was $8000 and our deductible is $10000 so we paid more than twice as much just because we are insured.”

Hospitals, providers, and pharma provide inflated pricing just to make the insurance companies feel like they are getting a deal. They are blind to the consequences to the patient, and their financial wellbeing.

Also, what if we fought to buy our drugs over the border? I know it would be a temporary win, but if we stop playing the game here, and buy from Canada or Mexico, maybe we can force their hand to incite change.

Yes, as stated in my last blog, going to our employers and asking to put insulin on the preventative drug list so Insulin isn’t subject to deductibles is great. It can be an immediate help.

But it’s a Band-Aid.

If insulin companies continue to inflate their prices how will any of this help? Lilly’s rising of their prices RIGHT after our “Insulin Price Workshop” is a slap in the face. And it’s conceivable they will raise their prices again within the year.

We aren’t the ones with the problem, Lilly. You are.

Take responsibility for the clusterf-bomb you are helping to create.

Take responsibility for the lives that are in ruin because of your decisions.

Diabetes is hard enough. You’ve succeeded in making it harder.

My children’s futures lay in your hands and you are gambling with their lives in honor of your bottom line.

I’m going to tell my story to all that will hear. I urge my readers to do the same.

“Honey. We’re home.”

Friday, May 5, 2017

Let's work for better.

If the Grand Canyon was created by water, I wonder how my eyes have yet to become canyons themselves.

Last night as the tears flowed uninterrupted, my husband held me knowing there was nothing he could say. He bounced his feet, rocking me into a relaxed state so my mind could sleep, and ultimately find a little rest.

I worry so for my children’s future. These preexisting conditions that they are strapped with will be a monkey on their back for the rest of their lives.

Will they be able to afford insulin?

Will they be free to see a doctor or a specialist if needed?

Or will they be one of the thousands starting “Go Fund Me” accounts to stay alive?

I feel like I’m failing them.

America has made it clear: The almighty dollar is more important than life.

And my calls to our representatives and meetings with Insulin companies are gleaning no immediate change, and such little hope for the future I wish for.

It’s easy to demonize people, especially when their choices have direct affect on our own lives, and the lives of those we love most. But as I sat in a conference room at Lilly in Indianapolis last month, there was little room to judge the humanness of the people who worked there. They looked us in the eyes and said all the right things. They told us they knew that people were hurting, they knew that they needed to do something. They knew that things needed to change and that’s why we were there. The change couldn’t be made alone, they need us to help.

Which when I type it sounds completely absurd, but yet it is true. Part of me wants to yell, “You got us into this situation, now get us out!” But the truth is, the way American Healthcare works…that is what got us into this situation, and there is absolutely no easy way out.

Only our voices can incite change in the United States Healthcare System. We vote for people to  represent us, they work for us.

(Or for special interests. Or for their party. Who knows anymore.)

But as easy as it is to just throw our arms up in the air and swear at executives and government representatives, we need to suit up.

We need to act, and fight, and voice our frustrations in the right places with the right emotions, at the right time. (Which is now, by the way.)

Lilly has long term and short term solutions. One of the short term solutions is their 40% off retail program that wasn’t fully presented to us because our stories cut them short.

“I appreciate that you are trying to do something, I promise I do, but it isn’t enough. Individuals and families are suffering.”

Story after story of fears for our futures. Story after story of struggling to pay to stay alive.

They got it. Tears were in their eyes. Trust me, Lilly understands the deep urgency of the situation.

While they start work on their end, there is something we can do on our end. We can sit with our HR departments and explain how much we are paying for diabetes supplies. We can ask them to change their plans to put insulin on the Preventative Medicine List. This way insulin will not be subject to deductibles. You’re employer has the power to do this, and it has been shown that it will cost less than a dollar per year, per employee to make the change.

It needs to become the norm for employers to challenge PBM’s (Pharmacy Benefit Managers) on plan design. Employers are at the top of the food chain; they have the power to do this. But they won’t do it if they don’t know there is a problem. There is a good chance your employer doesn’t even know what your family is paying.  On their end, Lilly will work to make sure that the PBM’s pass on the discounts they are giving to us. Right now PBM’s are charging us full price and pocketing the discount difference. They need to feel the pressure from all sides. (On a side note, it is my understanding there will be help resources and even workshops on this topic forthcoming, from a variety of sources.)

Tell your story.  It can make a difference.

Especially now.

Call your senator. Tell them your fears for our future. Tell them if you are struggling now, and if you are not, tell them about all your friends that are.

I know it doesn’t seem like much but small and simple acts are what change the world.

Don’t do nothing.

Call someone. Write someone.  Act.

The more voices, the more the impact. Don’t brace yourself and hope for the best.

Please don’t.

This is a pivotal time in our history. Our stories are powerful. Don’t be afraid to ask for better.

Perfect will never happen.

Let’s work for better.      (Thanks Bennet.)


There is a thorough overview of the Lilly Diabetes Insulin Pricing Workshop HERE, written by Mike at Diabetes Mine.

Please sign up and join The Affordable Insulin Project HERE. Once it is launched it will be a mechanism to help us find a way to reduce insulin costs.

Lilly’s Blink Health, 40% off retail can be found HERE.

The Lilly Cares Program can be found HERE.

A list of your senators can be found HERE.

A link to the DPAC (Diabetes Patient Advocacy Coalition) App is HERE.

And my love for you and our community can be found HERE, always.