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, 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.)

Wednesday, November 2, 2016

Sometimes vs. Most of the Time

Sometimes Diabetes is a big deal. Sometimes it isn't. The ebb and flow of emotions is exhausting, but thankfully, the ebb is always longer than the flow.




Sometimes at night, when the alarm goes off…I have a mini fit. I thrash my legs and moan like an 8 year old tasked to do the stupidest of chores. I am ridiculously tired. I roll out of bed walking back-bent-arms-hanging, channeling all my anger to the Legos on the floor, wondering when, if ever, I will get a good night’s sleep. Once I get to the boys though, my heart usually softens. Their sweet faces calm my shaking hands and my selfishness turns to concern as I check each boy and assess their situation. But when I get back to my bed, I fall in like a dead body; face first…KERPLAT…on to my pillow. Wondering if I’ll be able to fall back to sleep, angry at the exhaustion that has taken over my body. Sometimes.

But most of the time, I just hop out of bed and check. No biggie. I’m not angry, or tired, or anything. I do the deed and go back to bed. Most of the time it is just a simple correction or a little banana or juice to get things back to where they need to be. I climb back into bed and fall asleep before my head hits the pillow. Done and done.

Sometimes I question myself. I’ll give the boys breakfast insulin and send them to school wondering if they will be ok today. Because sometimes I don’t do what the pump tells me to do. Sometimes I go rogue. I know that J has track, so I’ll scale back his insulin. I know that B has called me the last few days with higher numbers, so I give him a bit extra. I know that L has needed an extra snack for a week, so I give him less insulin. So I’m guessing. And sometimes when I guess…my entire body fills with worry sand, and I feel like I am 200 pounds heavier. On these days I feel clumsier in both mind and body, and I can’t think straight. And I pretend that I’m not worrying…I tell myself over and over and over that they will be ok. Sometimes.

But most of the time, I give insulin and I don’t worry. We have done this everyday for forever, and everything will be ok. And if it is not ok, then there was nothing more I could do. Most of the time I am at peace with my decisions. I know that my guesses are educated guesses. I live and breathe diabetes. I am not perfect…but I am capable. Most of the time. Easy peasy.

Sometimes, I’ll look at a pile of bloody test strips on the dresser, (aftermath from a long night,) and I throw up a little in my throat. It is the grizzly reality of our life. Sometimes, there can be 20 test strips lying on the boys' dressers from the evening before and a couple checks through the night. I pick each one up to throw in the garbage. It hurts my heart as some of them stick to the dresser. Tears come as I wonder if this will always be our reality. Wondering if there will ever be a cure. The image throws me…and validates all my anger towards this disease. I think of their callused fingers and I want to roar like a mother lion that is protecting her young. Sometimes.

But most of the time, I’ll clean up the strips and disinfect the area like I always do and it is the most normal of things. It is not big deal. Test strips are nothing new. Hell…they are EVERYWHERE. Normally the strips go straight to the garbage or in a cup I keep next to their supplies. I am thankful for being able to test. This instrument is fairly new in this world. How blessed am I to know what to do at any time of day just with a poke of the finger? I thank the Lord for that monitor. Most of the time. Done and done.

Sometimes I let my brain go to that dark place. The place where the seriousness of this disease is magnified and made uber clear to every one of my mommy senses. Sometimes, like this week, I hear the stories of children dying in their sleep from Diabetes and I have what I call, “a silent freak out.” I don’t talk about it. I pretend I am not worrying about it. But it is there in my mind. So when something else comes up that is frustrating, I lose it. I lose it over the littlest of things. Not because of the little thing, but because of this secret worry that has burrowed like a mole deep into my head and is planning to hibernate there for the winter. There is this background worry that affects every aspect of my life. It defines me, it puts me on edge. And at these times, I hate diabetes. Sometimes.

But most of the time, I am grateful. I see the blessings right in front of me. They are vibrant, smart, and amazing. They can do anything. Nothing can stop them from achieving their dreams…not even diabetes. I am grateful that they are alive…that they don’t live their lives in a hospital. That diabetes has made them stronger, more empathetic people. We are a close, united family partly to do with diabetes. We are blessed daily with technology that makes this disease manageable. We are a family that loves each other, and when it all comes down to it…isn’t that all that is important?

Yes, sometimes I am an emotional wreck. Thankfully, most of the time…I am Ok. That is why I am the Jekyll and Hyde of the blogging world. One minute I am preaching how manageable Our Diabetic Life is, and that it gets easier, and that newly diagnosed families will adjust to the craziness of it all…and the next minute I am heartbroken…scared and unsure of myself.

“Most of the time” I’m still Ok. And the “sometimes” that I am not…well…those times don’t last long. Those sometimes moments are the reality of what this disease dishes out. Diabetes isn’t going anywhere anytime soon. I accept that. Through the years I've come to understand that behind the rain clouds the sun is always there. We just need to be patient…the sun will make itself known eventually. Sure, some storms last longer than others, but that is with every aspect of life.

When we were new to this life, when J was just a baby, things were different. The bad times seemed like they were most of the time. And it seems that only sometimes we got a taste of what was “normal.” As time passed…the two switched places. I often tell newly diagnosed families that things will get easier. It sucks that easier doesn’t mean easy…but it does mean life will be better than it is now. So much better that you will feel normal again. You WILL feel alive again.

I get that normalcy most of the time.

And the sometimes that I don't...well, I blog. And it makes me feel better. 

Tuesday, November 1, 2016

It's just one number.

When Doug and I first met and I dropped the bomb that I had three children with Type 1 Diabetes, he was unfazed. He had a brother in law with T1 and a close co-worker/friend that was diagnosed not too long before. He knew that Type 1 was autoimmune, and he even knew what insulin pumps were. What he didn’t know was what it was like to live with three teenagers who liked to pretend that their Diabetes was no biggie. When random 400’s popped up on the boys' blood sugar monitors last year, Doug was immediately concerned. My nonchalance about those numbers threw him off.

Him, looking at me wondering why I’m not freaking out: “Ummm, that ‘s a terrible number.”

Me, shrugging my shoulders: “Most of them are. But it’s a number, and I’m thankful for it.”

It’s hard to explain to a muggle that after so many years and so many numbers, we have to distance ourselves from them emotionally. Sure, there are times when we need to get frustrated and course correct, but for the most part, random highs and random lows are par for the course in growing children, and most especially in pubescent teenagers.

I’ve written dozens of posts about the numbers, but below you will find my very first one. It includes the best explanation on why I had to take a step back from taking numbers personally.


MONDAY, JULY 27, 2009

Set up to fail

Sometimes I am convinced the cosmos have put me in a lose-lose situation. With three active boys with Type 1 Diabetes it is generally all but impossible to get all of them to have numbers in range. Inevidably, one of them is too high or too low. I am set up to fail. And honestly, it used to get me down...really, really down. I would wallow in the self pity of bad momdom, and think that I was a failure as a mother. I would think that I let my children down, and agonize over the thought that their future health lay in my hands alone. Night time sugar checks became the bane of my existance. "Who will I let down tonight," I would think.  

Then last summer something happened to change my way of thinking. We were at Diabetes Family camp and J came up to me and said he needed to talk. He had a counciling session with his group, and his councilor encouraged him to talk to me about his feelings. He said, "Mom, I feel like whenever I check my sugar and the number isn't in range, I let you down. I see the look on your face and it makes me feel awful. I hate it when I disappoint you with bad numbers."

HUH? 10 years. He'd had Diabetes for 10 years, and he's felt this way as long as he could remember.

All those times when J would check his sugar I was feeling awful that I was letting him down. And for years he took that as I was disapointed in him, when truely I was disapointed in myself. I had to convice J that I NEVER was disapointed in him, and actually had always been proud of the way he's handled his diabetes. It wasn't long before we decided that we were in this together and both of us were doing the best we could. From then on there were no more bad numbers. They were all good because they gave us the information we needed to fix the situation. Also we agreed that numbers didn't define our worth. One number is just that: ONE NUMBER. 

Do I have bad days? Yes. Sometimes it's like it is all out of control and I feel like crawling in a cave. When it gets that way I call my endo, who obvioiusly I have a close relationship with, and say, "Help me fix this." I usually change basel rates on my own, but I have learned to recognize that sometimes I am too overwhelmed to figure it out by myself. Now, when that 400 pops up I can say, "Fix it." and forget about it.  It is what it is...a number. And I am thankful for those numbers, good and bad. As long as we're acting on them, we're winning. Without numbers I would be like those parents long ago who had to wake their children at night to see how hard they would squeeze their hand. The softer the squeeze, the larger the scoop of jam.

 I think not knowing at all is scarier than a 400.