Tuesday, March 14, 2017

The Avalanche

Lately I’ve felt a pull to reach out. I know that the feeling of “me too” is an important one, and I know that the “power of same” can soothe shaken hearts and lift us during our darkest hours.

Parents of teenagers with Diabetes, I don’t want you to think you’re alone.

I don’t want you to think you’re a failure.

I don’t want you to give up.

Admittedly, it’s harder than I even thought it would be. It seems pretty universal that our children go through this superstar period where they show us how capable they are. They show us they are as smart as we are, and rise to the occasion every time. Every freaking million and half times...

And then one day they stop.

And it’s frustrating for us, and confusing. They know the work is important. Nothing changed from yesterday to today. They know what to do. WHY AREN’T THEY DOING IT??

We feel like they’re broken. We feel like we’ve failed them. We feel the avalanche has begun and we can’t hold back the boulders looming above their heads. Even if we could stop one, there are thousands more. Why can’t we control the avalanche of numbers? Do not our children see? Don’t they feel the danger? The rocks hit their heads and they aren’t even fazed…

They aren’t even fazed.

I have three teenagers with Diabetes that aren't even fazed.

At first I thought the process of unfazement was stupidity.

But I’ve found the real word I’m looking for: resiliency.

Resiliency: The capacity to recover quickly from difficulties; toughness.

They are coping with the avalanche the best way they know how. By this age they understand what diabetes is. They understand what it can do to their body. They understand the importance of the work. They understand it will never go away…

And so they cope with their teenage superpower: apathy. Because internalizing it all could break them. They aren’t ready for that kind of reality yet. So much to worry about going through puberty…keeping oneself alive on top of everything else can just be too much.

It wasn’t that long ago that we stepped back and gave them the freedom they desired. They earned it. They were awesome. But some of them....most of them...need us to step back in. Our vacations from diabetes were glorious for sure, but vacations are just that…temporary breaks.

Maybe we need to check them when they wake up in the morning, and when they go to sleep at night.

That’s two checks that may not have happened if we didn’t step in.

We may need to begin 2 am checks. The nights are half the battle. We can win it for them.

Maybe we need to remind them to bolus after dinner, even if they roll their eyes.

Maybe we need ask them how much insulin is left in their pumps.

We need to be there for them even if they don’t want us there.

My boys are still my babies. And my babies need help.

There’s an avalanche after all…

And I’ve been lazy. I’ve watched that avalanche and scolded them for not working to avoid it…instead of jumping in and lending a hand.

They need my help.

And scolding isn’t help.

Disgust isn’t help.

Disappointment isn’t help.

The definition of help is offering resources or assistance to make it easier for someone to do something.

I know some kids don’t want “help.”  But I can tell you that now that I’ve stepped in again there is marked relief on my boys’ faces. Yes, it’s frustrating that I have to think for them…but they need me.

They need my help.
They need my reminders.
They need my reassurance.
They need me to take a couple of the boulders to the face for them.

I can take it.

I can help model that resilience. In Psychology Today they say that resilience is that ineffable quality that allows some people to be knocked down by life and come back stronger than ever. Rather than letting failure overcome them and drain their resolve, they find a way to rise from the ashes.

Rising from the ashes? Ouch. That isn't an easy prospect when one is alone. 

But...they're not alone.

We’re better together.

To all of you parents wearing worry as your cardigan…we can do this.

Hard times don’t last forever.

One day they’ll surprise us again.

It’s going to be ok.

We’re not alone.

They're not alone.

Let’s help with our superpower: love. (And our sidekick: the parent face.)

Monday, January 9, 2017

Eli Lilly insulin, 40% off retail.

I’m late relaying this information, but it is important, and might help you or someone you know.

Insulin prices have tripled in price in the last 10 years. It’s not right, and it’s complicated. But Eli Lilly has extended an olive branch of sorts to indicate they are listening and know the cost of insulin is hurting individuals and families.

The olive branch comes in the form of a 40% discount off the retail price of their insulin. For those that pay cash for insulin, or have high deductible plans, this just may be a way to get through these troubling times.

Eli Lilly Diabetes has partnered with a website called “Blink Health.” If you go to the website HERE and register (for free,) you can purchase your insulin with the 40% discount and then bring your electronic receipt to almost any pharmacy to pick up your insulin. It’s really supposed to be that easy.

If you get to the pharmacy and find that your insurance actually does cover the insulin, or you can get it for less, the website will refund your money.

You can do this with almost any insurance, unless you’re on a government sponsored insurance plan. (Apparently there are too many regulations for this to be allowed.) The only unknown is if your insurance will allow you to put this purchase towards your deductible. That is something you will need to call your insurance to find out. Technically, this purchase on Blink Health works outside the insurance industry so you won’t need to provide any insurance information to purchase the insulin. You will need to have a prescription on file with your pharmacy though.

You can leave any questions you might have in the comments section and I’ll do the best I can to answer them. I have contacts at Eli Lilly Diabetes if the question is out of my depth.

I went on the website today and found a vial of Humalog insulin to be $174.34. There is also a $5 discount that will be applied for your first order.

This in no way solves the insulin-pricing crisis, but it helps. And that is what we asked for: help. Thank you Eli Lilly. I hope Novo Nordisk and others look to follow suit.

Tuesday, December 20, 2016

I can’t hold more.

I’m coping.

I’m living.

I’m even happy.

But I can’t hold more.

I’ve been given a lot to hold, and I hold it gladly. Even though the burdens are heavy and the emotions are awkward, I can hold them all day, every day. All night, every night.

I can and I do.

I hold them for my children.

I hold them for those I love.

I hold them for Diabetes.

I hold them for my family and my friends.

I hold them for my husband.

I hold them for the world.

I hold them for myself.

There is so much to hold.

But I can’t hold more.

I cry easily because of this. I sob, sitting on the closet floor, because one of my children found a new burden to carry. I want to take the burden away…I want so badly to hold it for them, but I can’t. There is no room to hold it. So I work to purge the tears to make more room. I try earnestly to will myself to take it in.

But I’m at capacity.

I let the tears flow in the grocery store parking lot because people I love are struggling to carry what they have. Why does that make me stress? I want to take it from them. I want to make room.

But again, there isn’t room for it.  The tears that leave my body only afford a limited amount of  space for more burden. There just isn’t ENOUGH space. I can’t.

And I feel like a failure.

Why can’t I hold more?

Why do I break so easily when I try to add just a trace amount of weight? Who determines my capacity? Is it I? If I determine it, I will carry more! I WILL!


I’m holding too much as it is.

The numbers alone would break a less assuming soul.

The weight bends my back like a bag lady carrying her entire existance. The emotions fill my body taking every bit of space available. I try to eat my emotions thinking they’ll find a place to store…but it doesn’t work that way. And it’s just making me fat.

I hate that I break so easily with such a minute amount of weight. I want to hold more! But my body and mind scream back at me, “YOU CAN’T HOLD MORE!”

It’s been a frustrating process to say the least:

New burden-à Cryà Try to hold it à Can’t hold it à Complete frustration à Breakdown

It has only now occurred to me that I need to set this load down.

I’m tired. I hurt. I need rest.

Looking inside myself to find room isn’t working anymore. “GOOD HELL, MERI! THERE ISN’T ROOM!!” This load needs to go outward, away from me. I need to let it all go and stop trying to hold the world in my arms.

My arms, they ache.

And it's exhausting walking normally. Keeping my chin up is a workout in itself.

I suppose I’m putting this all out there as a plea from myself and on behalf of my friends who loads are all full up…

The plea: Please, be kind this season. When those around you cry or get upset easily, try to imagine the load that they are carrying. Maybe they can’t hold more either, and they don’t know what to do with that extra something that was just shot at them. Maybe they are struggling just to move…loads are invisible you know. Smiles are the best hiding place. And their loads can be ancient...part of the weight can be from years and years ago.

Some of the older ones can get very heavy during the holidays.

A little understanding for my friends please.

And for me.

Until we can find a way to set our loads free…there is no room. And that can get complicated.

I’m determined to find a way to give up my load in 2017. Worry is an old friend, but one I’m ready to distance myself from.


These are the only four action items that will help carry what I have, and in turn make me light again…and maybe a little less crazy.

Wish me luck, friends. And I will wish the same for you.

May we all find brightness this holiday season. 

Wednesday, November 30, 2016

Dexcom: Teaching an old dog old tricks.

It’s the last day of Diabetes Awareness Month and I have come to tie up in a pretty pretty bow the rear of a month that can only be described as craptastic. (Thanks election.)

Regardless of who is President of the United States, Diabetes still lives in my house…and a new day has dawned, as we are now proud owners of three shiny Dexcom G5’s.  Which is awesome, and also craptastic in its own right.

Three teenagers. Three constant flows of numbers.

See Meri’s swelly brain.

See Meri’s swelly brain explode from information.

(Thanks to Cassie on Facebook for this one)

For the most part, I’ve embraced my new role as the pancreas switchboard. Texting “You need insulin” and then seeing the arrow dip down has been exhilarating. It’s the late nights that have been releasing my sanity from its cradle and essentially kicking it in the arse over and over and over again.

And over again still.

I’m not wired for nighttime checks anymore as I’m not the young, spunky mother I once was. I’m fickle, and I need sleep…which doesn’t matter because kids come first and diabetes doesn’t sleep, and a million other reasons. Thankfully, I’m pretty close to dialing in B and L’s basal rates and may not have to do nighttime checks for the eternities.  L went to sleep last night at 132 and woke up at 150. B went to sleep at 152 and woke up 121. I didn’t make any corrections for the first time in forever at my 1am check, and that’s no small feat for two boys in the throes of puberty. Don’t start feeling all inadequate though, their numbers generally aren’t so pretty...L’s correction ratio has been changed no less than three times this month. I’m grateful for the extra information Dexcom is providing, even if it is brain exploding.

I do realize I’m an old dog learning old tricks. I know a lot of my friends have been using Dexcom for YEARS and I’m just now jumping on that bandwagon. Medtronic broke us. Their first CGM hurt, and was inaccurate, and completely thwarted any positive thoughts about trying a different one. I’ve waited patiently for the day I could throw on CGM’s that would be accurate and comfortable. I feel a little stupid we waited this long, but I haven’t been in an appropriate space to begin such experiments until now.

Getting their numbers on my phone is a big plus, although completely erratic. My information depends greatly on three things: them keeping their phones charged, them keeping their apps open, and them actually calibrating. I probably see their numbers 50% of the time, which may sound unacceptable to you, but for me? I try hard to welcome the breaks. The information we do get is invaluable. I’ve made about thrity bajillion changes to their pump settings this month. I echo the sentiments of my fellow DOCers: Dexcom is worth its weight in gold.

And holy hell, it is accurate.

Also, lest I fail to mention: my boys love their Dexcoms. They don’t complain about insertion, and they like having their numbers at their fingertips. The arrows bring great peace of mind to my little L who suffers so from anxiety. At first I worried that the numbers would bring greater anxiety, but that hasn’t been the case at all.

Dexcom has been a bright light in a November that I think all of us would rather move on from. All in all, it’s been an awesome, if not eye-opening, experience...now if we could just lobby for the next Dexcom update to include a servant of sorts who would do the nighttime checks, that’d be great.

Here's to a happy December for all!

Tuesday, November 15, 2016

We find what we seek.

I used to think the better part of the world was selfish.

And then my husband got cancer. And then he died from that cancer.

And I learned that the better part of the world was selfless and good.

I learned that good is quiet, and serves people in gentle ways not advertised to the masses.

I learned that behind the hustle and bustle of the sidewalk there is a movement of service and love.  It isn’t often shown in public places, but behind closed doors.

Good doesn’t search the accolades of the world. It isn’t puffed up and clamorous. It is meek and humble and is inside more hearts than can be quantified.

Quiet acts of kindness aren’t often on the news. Sometimes a story or two leaks through and we ask, “Why isn’t the world like this? We need more of this!”

But the world is like this.

I’ve seen it pour into my home like a fireman’s hose.

As I type, there are people serving others. There are people being compassionate by listening, loving, giving, serving…acting on a hum in their heart that tells them there is a job to do.

A quote I read this week: “The world in which we live would benefit greatly if even more men and women would exercise charity, which is kind and meek. It is without envy or pride. It is selfless because it seeks nothing in return. It does not countenance evil or ill will; it has no place for bigotry, hatred, or violence. It refuses to condone ridicule, vulgarity, abuse, or ostracism. It encourages diverse people to live together in love regardless of religious belief, race, nationality, financial standing, education, or culture.”

Sometimes it is a small note. Sometimes it is a hug. Sometimes it’s sacrifice. Sometimes it is hard work. Sometimes it changes others lives. Sometimes it changes ours.

Sometimes it is done behind the scenes, anonymously.

But most of the time, it’s there when we really need it. If we don’t see it, we’re taking it for granted.

We find what we seek.

I’ve learned that Charity isn’t something we donate to; it’s a way of life. It’s selfless acts that are fluttering unnoticed around us at all times. 

As we kick off the season when charity becomes the buzzword of the day, it might be appropriate for each of us to pause and redefine what charity really means, and then devise a personal plan to weave our love into others lives.

I promise you, charity lives. It may not live in the trolls’ rants online, but it is all around us, in the real world. 9/11, Hurricane Katrina, The Boston Marathon Bombing…they are moments when we were afforded a small glimpse into the ecosystem of charity that lives in the hearts of Americans.

Please don’t let the media jade you during these perilous times. They make money on fear. They can’t find the love because it isn’t boisterous. Hate is boisterous. And it hurts my heart that it's being pandered to.

People. Are. Good.

Even people that think differently than you.

If you trust in anything, trust in that.

"Wherever there is a human being, there is an opportunity for a kindness." -Lucius Annaeus Seneca

Monday, November 7, 2016

When life hands you Ermas...make memories.

RIP Erma.

Diabetes Awareness Month Throwback 



Erma was big, and she was beautiful.

But during the time I knew her, I didn’t appreciate what she had to offer in the least.

To me, she was old.

To me, she was too fat to take anywhere.

To me, she was a complete embarrassment.

I didn’t want to be seen with her. If the saying, “it’s what’s on the inside that counts” holds true, Erma didn’t count much. She wasn’t much to look at, and her personality wasn’t that shiny either.

Her companionship was a necessary evil, and for a good year she went with me everywhere.

Her make and model speaks volumes. Erma was a 1979 Chevy Beauville G20 Van.

I took my driving test on my sixteenth birthday and pathetically failed by one point. Devastated, but not completely defeated, I returned one week later and passed with flying colors. Since I didn’t have the funds to get my own ride, my persistence landed me the use of my mother’s two toned eight passenger Chevy Van.

When I drove it to school, my friends and I would park it blocks away from the eyes of our peers. Who cares if we had to walk three blocks…we were convinced the van could not be seen or our popularity score would plummet from its already low elevation.

Eventually that van became famous. It was first choice when going out with the girls…it could fit a big group and it was destined for adventure at every outing. We gave it the adoring nickname “Erma” and began parking it closer to the school…even in the parking lot when we were feeling bold.

My relationship with Erma taught me a lot.

Let’s face it, she was big, and I often thought people would only laugh and stare. I thought people would judge me differently because I rode with her. But I was so wrong. It was BECAUSE I rode with her that my nights were memorable. Everyone knew who she was…because of her I made friends and unforgettable memories I’ll keep with me forever.

Sometimes what we see as our biggest disadvantage is actually one of our greatest assets.

I eventually got a Nissan Sentra and left Erma behind…but the Nissan Sentra memories weren’t as hilarious. The weekends weren’t as memorable, and the rides weren’t as smile inducing.

I lost a bit of the magic when I lost Erma.

I know many of us see Diabetes as our Erma. She is the elephant in the room that we think everyone is gawking at. But honestly…it is an asset. An asset that is making our memories more vivid.

Ermas give our good times more color.

We have a better view of the world riding in the front seat of Erma. Driving her at first may seem awkward…the giant steering wheel, the AM radio and the high wide front seat seem unnatural…but when you ride in a different stratosphere as the rest of the world, you see a fuller, more simple picture.

This new perspective we have is because of Erma…and if she goes away someday, our life will turn into a Sentra. Not a bad ride, in fact an extremely comfortable, smooth and enjoyable ride…

Yeah, I know…we will all take that Sentra ANY day of the week.

But one day we will look back and see Erma in a different light than we do today. We’ll see she made the good times brighter, and we’ll be even more appreciative of the wider view she affords us.

Thursday, November 3, 2016

A discussion with Eli Lilly about insulin prices.

I had a face to face meeting with Eli Lilly yesterday, speaking specifically about insulin prices.

This is what they want you to know: The spike in insulin pricing was spurred by the Pharmacy Benefits Managers. That in itself wasn't a surprise to me, but there are a few details I want to share that I haven't seen reported before.

This is the story:

4 years ago Eli Lilly got a call from one of the major Health Insurance Benefits Managers saying they were no longer going to carry/cover their insulin anymore. That’s it. They were just dropping them off of the plan. Obviously, Eli Lilly was backed into a corner. It was either negotiate with the Benefits Manager or not have their insulin available to a giant part of the patient population in the US. They negotiated with them and gave them deep rebates on their insulin.

“Deep rebates?” You ask.  “We didn’t see deep rebates.”

Eli Lilly explains the process like this: If they sell a $100 bottle of insulin to Pharmacy Benefits Manager for $40, the Pharmacy then sells the bottle of insulin to us for $100 and the Benefits Manager pockets the $60. They feel validated in doing so because they say they are using that $60 to pass savings onto the consumer by way of lower insurance premiums and the like.

That’s bullshit. If this is true, this is coercion. And it should be (is?) against the law.

Coercion: The practice of persuading someone to do something by using force or threats.

It seems as though to “fix” the problem, insulin companies felt the logical thing to do would be to inflate the list price of insulin so the Pharmacy Benefits Managers FEEL like they are getting a deal. So hypothetically, rather than sell a $100 bottle of insulin for $40, they could sell the PBM’s a $235 bottle of insulin for $100. Then they are making a profit. PBM’s are happy. Eli Lilly is happy.  Who isn’t happy?

Oh. Us.

The insulin companies play down the list price because they say that isn’t what most people pay. Most people enjoy discounts through their insurance company.

Oh, but wait. The new trend with insurance companies are high deductible plans…so a lot of people are paying list price for months and months, most almost the full year, until their deductible is met. Our family of 11 just met our deductible in October. (Thankfully, our pharmacy benefits are not subject to meeting the deductible first. Yet…)

And the wave has just begun to crest. High deductible insurance plans are on the rise, and selling at an alarming rate, because it is all America can afford. (I use the term “afford” loosely.) Last night Doug and I were reviewing our benefits options online, and in bold letters on the website it said, 
(I shuddered when I read it.) I believe we are only seeing the tip of the iceberg when it comes to accessibility to insulin and the like. It’s scary to say the least.

What about Canada?

When I asked why we could walk into a pharmacy in Canada and buy the SAME bottle of insulin for $35 that sells for $235 in the states, I was told it was because the Canadian Government demanded that price.

“How can you send it over there for just $35?” I asked.

“We’re losing money.” They said.

“So you figured, we’ll just have Meri make up the difference?” (I’ll get back to this shortly.)

The conversation then switched over to what I referred to as “generic” insulins coming on the market this coming year. The correct term, I found out, is “Bio-Similar” because it’s more complicated then just producing a pill of some sort. Eli Lilly is coming out with a Bio-Similar of Sanofi’s Lantus in December. Because it is just as complicated to make as the any other insulin, the cost difference isn’t really going to be apparent. Sanofi is retaliating, so to speak, by producing a “Bio-similar” of Eli Lilly’s Humalog. Already, CVS says they won’t cover Lantus anymore, and will only cover the generic, (wait, Bio-Similar) that Lilly is making.

“How is any of this going to help us!?” I asked.

“Compitition can drive down prices. It will be a good thing.”

“But insulin has been completely immune to the competition pricing wars, how am I supposed to believe it will begin now?”

It seems some (one?) insurance companies are already agreeing to put the “Bio-similars” under the generic pricing tier for co-pays. That will help some people. But how long with that last?

My next question was this: “So insurance companies will likely say, ‘We’re not covering Humalog anymore, we are going to use the Bio-Similar Sanofi is producing instead.’ If this happens, and the American Population can’t readily get their hands on Humalog, who is going to pay for Canada’s Humalog?”

Obviously they didn’t answer. It was a rhetorical question anyway.

But really, when I think about it, there is no way they are literally “losing money” on sending insulin to Canada. There HAS to be a benefit, or they wouldn’t send it. (I sent an email asking for clarity. I'll let you know if I receive a response.)

Two days ago Bernie Sanders sent out a bunch of tweets burning (Bern-ing?) insulin companies for their price hikes.

How ridiculous is it that we want to open boarders for us to buy insulin from other countries because other countries have governments to negotiate and we do not.

We need to fix the problem at home.  OUR HEALTHCARE SYSTEM IS BROKEN.

Eli Lilly asked me to point you guys to their assistance program, (link is HERE,) but I feel as though that’s a Band-Aid. Let’s work to fix the problem at the core.

Is anyone working to fix the problem?

Lilly insists they are. They already made a trip to Washington last month bringing light to the problem the Pharmacy Benefits Managers are giving them. The PBM’s are being put under a microscope and I think that can only be a good thing. Hallelujah! I’m thankful Lilly is taking strides to incite change. I encouraged them to be vocal about what they are doing. Our community feels so helpless right now.

We need hope.

Lilly is working with the other insulin companies to eventually meet with government agencies for change. They admit though, as large as they are, they are nothing compared to the insurance industry.

“Then you need allies!” I said. “Work with other manufacturers of life-sustaining drugs. Insulin and other drugs that keep people alive should be in their own class. There should be laws to increase accessibility and protect pricing .”

What would the rule be? Maybe, if a patient starts to die after 48 hours without the drug, it goes into a “Life-saving Drug Class.” And because of this, patients would be protected from price gouging. The more people fighting the better. I think Lilly, Novo and Sanofi are doing themselves a disservice working alone. The bigger the voice, the better chance for change.

And what about us? We want to help! One of the things Lilly brought up is the fact that we need more voices, no one is fighting. He pointed to six years ago when insurance companies began to say they weren’t going to cover one insulin, and patients needed to switch to another insulin, most patients just switched. There was no big fight. (Never mind these families were backed into a corner and most didn’t know they could fight, but whatever…) The Diabetes online community is ready to fight now. We need a place to channel our voices. Where can we do that?

They didn’t have an answer for me, but later we were encouraged to speak to our congressmen and senators. Bernie’s onboard. We need everyone else on board too.

My main message to Eli Lilly yesterday was this: The ramifications of what is happening are more far reaching than they think. They believe people aren’t paying the full list price of insulin, but they are. Many MANY people are, and family’s lives are in ruin because of it. High deductible plans have run rampant the last couple years. Deductibles are just going to get higher. People are suffering, and it is real and far more prevalent than they think. I appreciate their savings plan that offers assistance, but this is too big for that to make the difference we need. Change needs to be wrought now, there is too much at stake for my children, and my friends, for us to let things continue as they are. I shudder to think what the state of our country will be in a few years with health care going in the direction it is. The wave has begun to rise and it’s building steam…what will the crash of that wave bring? I personally know families that can’t afford insulin. Literally they have to skip a mortgage payment to pay for insulin. I personally know people who ration their insulin. They use less than their bodies need because they can’t afford it.

That keeps me up at night.

It is wrong.

I’m sorry that the insulin companies were forced into a corner and had to make hard choices to keep their products in the market. But those choices had consequences…as all choices do.

And in this circumstance, those consequences are dire.

We need change. And we need it now.

(Disclosure: Eli Lilly did not ask me to write a blog post. Every opinion in this piece is mine and mine alone. I think that's pretty obvious, but I thought you should know. Also, when I met with them they bought me a Diet Coke. Disclosure complete.)