Wednesday, April 18, 2018

Insulin is #6.

I ran across a fascinating bit of data yesterday watching an enlightening, and validating, lecture posted by a friend deep in the comments on another friends post on Facebook. (Link HERE)

I took a screenshot of one of the slides in the lecture, and Googled the information to confirm validity. 

Oh yes.

It’s real.

Heaven help us. It’s super for real.

I’ve been running the numbers in my head for the past twenty-four hours, and there is no math on this green Earth that makes these numbers ok.

I know that Insulin is complicated to make, but it seems as though the demand is surging the prices, rather than the complexity of it all.  Because let’s face it, the demand for insulin is only increasing…and that demand is not driven by superfluous wants, but rather by need.

Need to live.

My children need a constant stream of this liquid gold flowing into their body all day every day simply to stay alive.

Why would the price go down? No one is going to stop using it because of price. No one that uses it has a choice.

So friends ask me, what is the answer? What can we do?

I wish I were a brilliant mind. My swelly brain can scarcely process the information my boys are constantly throwing at me, much less answers on how to fix the US Healthcare System.

But here is what I do know:

* I am angry.

* This is not right.

* I’m worried about my boys’ futures. 

My boys are entering adulthood faster than I care to admit. Will they be able to afford one of the most expensive liquids on Earth to stay alive?

I know that I can’t sit here and think, "It'll all work itself out."

I need to say something. 

We all need to say something.

I will march around banging my pots together as long as I have to, so I can get more people banging their pots along with me.

I am tired of hearing about Stormy Daniels. (Oh my gosh! I didn’t even need to Google her name. I’m sick about it.) I am tired of hearing about Russian probes. I am tired of hearing about how much our President plays golf. I’m sick and tired of tabloid news and tabloid government.

WE NEED REAL CHANGE, and help, and hope…and our government is a complete joke. Every Politician is in the back pocket of one special interest or another, and this is not left or right. Is our government really so corrupt that we can’t look at the fact that people are dying because they can’t afford their medication?

I’ve always believed that our voices together could excite change, but our Government and news affiliates are living as a bunch of spoiled teenagers.

There is no bigger picture, just petty jabs.

The Healthcare System in the United States is not an easy mess to clean up, so it’s ignored. It's easier to call someone fat, or find something to ruin a reputation than to solve real problems.

If one can’t do hard things, one shouldn’t run for office.

6th most expensive liquid in the world…

On the list with LSD and Scorpion Venom…

But in Canada it’s $30 a vial?

I’ll just leave you with one more screenshot from the lecture and let the silence that follows speak for itself.

Tuesday, March 6, 2018

Teenager Black Magic

My children, who were once made of perfect innocence, have turned into wizards.

With a roll of their eyes I am banished into no man’s land.

My words are gobbled up by their minds and spit out into indiscernible sentences.  They can make anything I say mean whatever they want by taking poetic license with all that enters their ears.

The dark magic is carelessly used without regard for consequence.  Consequence that are convoluted, and not even a little bit obvious to them.

My self-esteem being one of those consequences. And what teen cares of their parent’s merits?

My trips around the sun are not their trips around the sun; therefore, I am clueless to their suffering. Anything they endure I will not understand without pretending to understand.  My wrinkles put me outside the realm of empathy. My quest to find peace in life bristles their wings.

Teenagers minds are the opposite of peace. They are chaos.

Though not by choice.

One cannot always see at first glance, but the chaos lives behind their eyes, where they try to make sense of a world that is teaching them one thing and showing them another.

Do the right thing…. but, right is wrong.
Be kind…. but, kindness is self-serving.
Find your happy place…. but, happiness is fake.
Trust in God…. but, God is for the befuddled.
You are loved…. but, love must be earned.

The last is most troubling. My children don't always see themselves worthy of love.

But my love for them exists beyond worthy measurements.

Love is not conditional when one is a parent. Love is there hell or high water. Love is brighter during the hard times. Love swirls within us no matter what the circumstance.

If only they could know.

Or maybe they already know but apathy and despair each have a hand over their eyes.

It’s hard to see all the good when one exists in darkness. Light doesn’t stand a chance when walls are in the way.

Wall after wall is erected. I stand on the other side…sometimes knocking, sometimes chipping away the drywall with my fists, sometimes using the wall to slide down to the ground…to pray. Or to wallow in my self pity.

And when they feel alone I call to them:

“Take down the wall! I’m right here! You are never alone!”

They are disappointed in themselves and assume I must be too.

Yet, I am opposite of disappointed. I am proud when I see them peek above the walls…even for a second. My heart bursts with excitement and love…

And then…

They disappear as fast as they appear.

Children that were once full of light and laughter are now looking for meaning, yet they don’t have the wherewithal to actually look.

I have found that meaning. I would serve it to them on a golden platter if I could.

I would pour it down their throats if it would help.

But meaning isn’t something that can be given.

It is something that must be found.

Love and meaning can heal. But only if one wants healing.

Sometimes my teenagers suffer and my love doesn't seem to fix it.

But maybe, it’s helping. Deep down, somewhere, somehow, maybe my love is helping. And for as long as there is a maybe chance…I will actively love. And do what I can to encourage them to continue putting one foot in front of the other.

One step.

Another step.

And another.

Until one day…maybe they will look up from their feet, and see the unconditional love and blessings that surround them and they'll become the light they didn't know they needed.

Until one day…the dark days, the teenager days, are gone.

Tuesday, February 13, 2018

Our feelings about the Abbott Freestyle Libre System

2 of my 3 boys with Type 1 Diabetes are Dexcom users.

One boy uses it because he likes the security of knowing his numbers all the time. He will glance at his phone, confirm how he feels, and move on.

One boy uses it because I still have some tiny amount of say in his life. He hates the alarms and he turns them off while at school. (I told you the amount of my influance is tiny. It’s pretty much microscopic.) With his social anxiety, having an alarm that might turn heads his way is devastating. But the silver lining lies in the fact that I get his numbers on my phone too, so I will text him when he needs a correction or food. The vibration of his phone alerts him of my text, and things get taken care of.

One boy refuses to wear the Dexcom. He is 20. I can’t force him to wear it anymore. He hates the alarms. He hates the profile. He hates having me see everything. I get it. I’m not happy about it. But I get it.

We’re the Goldilocks and the Three Bears of Dexcom users.

So when friends on Facebook started trialing Abbott’s Freestyle Libre, the wheels in my brain began turning at full speed.  And when I saw that we could get a free reader and one free sensor if we were Dexcom users, sparks were flying.

I got our Endo to send in a script to CVS, and brought our coupons over once the Libre arrived. 

I watched a quick YouTube video and immediately put it on J.  He said it hurt a little, but was so pleasantly surprised with the low profile of the Libre, he smiled wide.

BACKGROUND ON J: Diagnosed at 8months old, J is a sevant of sorts. He has an exceptional ability to feel his blood sugars. It’s every D-Mom’s dream. The problem with this is he has an unhealthy confidence about his numbers and tests his blood sugars far less than I, or his Endo, would like. I’ve witnessed him eat without testing first, because he “feels like he’s going low.” I’ve witnessed him bolus without checking his sugar because he “feels a little too high.” When witnessing these events I’ve tested his blood sugar myself…and he has always been right.  It’s all so wonderful and frustrating.  Wonderful because it’s a dream ability to have and I'm thankful he listens so closely to his body. Frustrating because I know he only has to be wrong one time for catastrophic consequences.

Enter Abbott Freestyle Libre:

He seriously loves it. And that isn’t just commentary. Last night he stopped me and word for word said, “Mom, I seriously love this thing.”

He scans his blood sugar ALL THE TIME.

He comes home from a full shift at work and I ask if he checked today. 

“4 or 5 times.”

I see him scan himself all the time at home. I see him scan himself before eating, before driving, before sleeping…and he’s asked me to scan him a couple times while he was lounging on the couch. It’s truly a miracle. To add to the awesomeness, the scans have arrows and graphs. It works much like a CGM, showing if his blood sugar is rising, dropping, or steady.

It’s been so life changing for J, I decided to let B try it for a month. 

Upon insertion he said, “I felt nothing.” Win.

An hour later, “I forgot I had it on.” Win.

Though when time for school he said he wouldn’t use it during class because it makes a loud BEEP noise when you scan.  

I just found out you can mute the noise.

Would I rather have them on Dexcoms? Of course. But this is a fantastic compromise for all of us. 

Some other pluses:

*Super easy insertion. And mostly painless.

*Nighttime checks without pricking fingers? Yes, please! I think about when J was a baby and how nice it would have been to not wake him at night to check…and to know what direction his sugars were headed. Man, I feel like it was the dark ages back then!

*The sensor never needs to be calibrated, although, upon insertion, it does make you wait 12 hours to begin getting numbers. We put it on before bed and he’s ready to go in the morning.

*The numbers seem to be quite accurate. Maybe 5 points off at times, but hot dang, it's good.

*The sensor lasts 10 days, and it doesn’t fall off. That thing STICKS. (Little ones might need to use baby oil when removing.)

*It’s way cheaper than Dexcom. The reader is one time $60-$75 dollars, and the sensors are around $50-$60 dollars for a month’s supply if you use the Singlecare Pharmacy Savings Card.

Suffice it to say, we are pleasantly surprised how well this is going. I’m thankful for the tools we have to keep my boys safe, and thankful to finally have something reasonable priced. Believe it or not, Abbott didn't ask me to write this, or even ask me to trial this. Even though this might seem like an advertisement for the Libre, our systems were acquired by me and used by my very opinionated boys.

If you have questions, leave them in the comments. We're newbies, but I'll do my best to help!

AHHHH! I love breathing in this Blogger air. I've missed you guys!

Wednesday, November 15, 2017

We're more than Diabetes

I sit here alone in the middle of Indiana.

A silent house.

A loud soul.

It pounds against my mind, begging for me to work through the feelings of anger, love, gratefulness, and fear.

The stories of Diabetic lives swirl around me. At times they can overwhelm my senses and put my busyness on pause.

In this moment I quiet my mind and ponder the last 20 years. The blood, the tears, the triumphs, the numbers…all of it replaying in subdued black and white. I see the history of my family and the impact of friendships and unconditional love.

I marvel at it all.

It’s impossible to box up all my emotions in one tidy blog post. Diabetes has been a constant companion, yet my history is so much richer than the worry it imparts.

My history includes four children. Little boys who danced and ran and laughed with tears streaming down their faces. Forty perfect toes, and eight bright eyes that have been through hell and back.

A hell that has very little to do with Diabetes.

As I take in the pictures and turn them from black and white to color, I don’t see insulin pumps. I don’t see test strips. I don’t see sleepless nights.

I see boys who are human and are trying to make sense of all the chaos life has to offer. I see them walking as steady as possible in treacherous winds.

Hard things. So many hard things.

But with all of it, so many more blessings.

J is the most loving young man I know. He still holds my hand. His hugs are never-ending. He’s been knocked down so many times as he’s sorted through everything, and yet he gets up again and again.

B is a force. He’s a whirlwind of empathy and care wrapped in the persona of a grumpy old man. He feels everything harder than everyone else, and desperately tries to hold it all in.

L is a miracle. He has overcome so many obstacles and is wise beyond his years. He’s kind. He’s sweetness from head to toe.

And M? He is a man. The little blond haired baby has turned into a six foot blond haired man. A man that listens, loves, and above all…tries his best. Always.

They are all so wonderful.

Yet, they are all so hard on themselves.

Because, Diabetes aside, life is a lot.

A lot of work.

A lot of feelings.

A lot of unknown.

A lot of not measuring up to impossible standards the Internet so indignantly imparts.

We have a lot on our plates.

But we have plates…

And we have each other.

We have an extended family that has become home.

We have so much more than Type 1 Diabetes in this house.

We have love. And we have faith. 

Some day my boys will see how important that faith is. 

Until then, I’ll remind them that they are loved, and try to give them the space to make mistakes so they can learn that life doesn’t end with one bad day…or even one bad number.

Our Diabetic Life?

That’s only part of the story. I leave that part here on this page…but there is so much more to us.

Volumes and volumes of text of more.

I’m done letting Diabetes overwhelm me today. I’m dusting off my faith and trusting in our beautiful future.

Anger? What good is it.

Love? It's everything.

Gratefulness? It turns what we have into enough.

And Fear? What is the point? Life goes on whether we live it to the fullest or not. Why let the fear mask all the good? Why miss out on happiness?

I’m grateful for all that I have, and I love my people. So so much.

Diabetes makes me love more...

I just can't be angry about that.

Friday, November 3, 2017

Diabetes Awareness Month Fallout

It’s Diabetes Awareness Month, or as I like to call it, Diabetes Throat Punches me Every Time I go onto Facebook Month.

Everyone is doing an amazing job of posting. My newsfeed is full of picture after picture; story after story, PSA after PSA…all good things! After all, it’s education that is much needed.

Diabetes has a lot of awaring to do, for sure.

I always start day one of November with the best of intentions. I want to educate. I want to show the world the work, the dedication, the pain, the all-the-time of Diabetes. I want to be a good advocate!


I also want to hide.

I want to curl up in a corner and pretend the seriousness of Diabetes away.

I want to live in a world where Diabetes isn’t a big deal.

I don’t want to think about my boys’ lifetime reliance on insulin.

I don’t want to think about what could happen if one of us messes up.

I fee guilty that I feel this way. I feel guilty that this month overwhelms me so. 

Because it is my job to advocate, making the world a kinder one for my children.

But it’s also my job to stay strong. I can’t do that looking at the reality of Diabetes every time I jump on Facebook. (Which is a lot. Don’t judge.)

Facebook is a double-edged sword for me. One side I find relief, acceptance, and “me too.” On the other side I find Diabetes everything: A constant reminder that this thing will always be there. A constant reminder that there is no cure. A constant reminder that this disease is hard, physically and emotionally for my boys.

I’ve been able to temper my brain into accepting only enough information and emotion so I can successfully rally through each day.  But when Diabetes Awareness Month rolls around, the information overfloweth and my brain swelleth.

It makes me angry.

It makes me sad.

It makes me feel everything harder.

I already feel enough. My feeling cup is full.

I hold it together all year long, but exposing the truths of this disease exposes my vulnerability. (Hold on, let me grab a robe…my vulnerability is showing…)


I can only hope that by having my little pity party, I will educate the world on just how all encompassing Type 1 Diabetes is. It affects every aspect of our lives. It can never be ignored…ever. (Well, it can for a few hours if we want to ignore consequences. But I'm my boys' mother. It is my responsibility to keep them healthy and alive...which is a pretty big responsibility, magnified tenfold when diabetes is in the picture.) 

Diabetes is a family member that lives with us that NEVER SHUTS UP. We try to make it comfortable, we try to keep it happy and quiet…but it’s always walking into the room, “Blah, Blah, BLAH BLAH BLAH!”

Don’t worry…I see it. I need to stop this post now.

Anyhoo…thanks for listening. I’ve gotten out all my angst and I will now post this and go back to reading my newsfeed with my mascara close by for easy reapplication.

Thank you to all of you who have the strength and fortitude to post your stories. I know they make a difference. I hope I can get over myself and make a difference too.

Wednesday, October 4, 2017

I heard my son's name.

I had just returned from a long trip and was sleeping soundly in my own bed. My dreams were vivid and detailed; My consciousness wasn’t anywhere near where my body slumbered.

I heard my son’s name and it woke me up.

I opened my eyes and listened. There was only silence. It was 4:30am and the house was still. I picked up my phone to check the boys’ blood sugar numbers.

L was 130.

B was 70.

J isn’t wearing a CGM at this time.

I tried to go back to sleep. Lately, it’s been common for B to be around 70 about this time in the morning, but he always stays steady. I had slept through a few alarms where he drifted to 69 and then back up to 70. (Man I've been sleeping through too many alarms again!) But, he was waking up in an hour anyway...all would be well.

I couldn’t sleep as my son’s name echoed in my ears. It was so real. The voice wasn't a yell, but rather an urgent, crisp call. It was a familiar voice that had woken me up. It sounded like B, but it wasn’t B…

It was Ryan.

“I’m being stupid,” I thought. “Go to sleep.”

But before I could close my eyes again I was up out of bed.

Feeling foolish and a sense of urgency at the same time, I thought, “It won’t hurt to check on them.” 

I checked B first. He was 70. Exactly what the CGM said he was. I set a temp basal of zero for a half hour and walked to the other side of the room to check J.  He was 350, which was unusual for him. (I later found out he ate some leftover Chinese food at midnight.) I corrected his sugar and thought that neither of these corrections was really an emergency. I must have dreamed that I heard the name.

Because I love all my boys, I went to L’s room and watched his chest. It took a minute, but I finally saw it lift and softly fall in a big sigh.

All was well.

“Go to bed, Meri.” I thought.

I couldn’t sleep when I returned to bed. My mind was alive with information, and I was almost haunted by the question, “Why did I wake up?”

I tossed.

I turned.

And 15 to 20 minutes later I got my answer.

B’s Dexcom alarmed.

I looked at my phone.

It said he was 42.

I jumped up and went to his room.

I pricked his finger to check his blood sugar.

It said he was 39.


"(Man I've been sleeping through too many alarms again!)" 

Needless to say, I’m thankful for miracles in my life.

And also for guardian angels. 

Friday, September 22, 2017

They save their lives.

His lanky body sat elegantly in the chair. The evening sun glowed behind him, backlighting the delicate hairs on his neck. His chin was raised and his expression was one of thoughtfulness. He flicked the insulin bottle again and again until he was satisfied. Withdrawing the needle, he nonchalantly began filling the reservoir. It all seemed so natural. If a stranger had walked into our home at that moment, I don’t believe he would have given my son a second glance. His movements were fluid, his eyes excited with information, his face serene.

The beeps began and he sat back contently in his chair waiting for the tube to prime. He saw me admiring him and his eyes narrowed. “There’s nothing to see here,” he said with a chuckle behind his breath. But it was too late, and seemingly impossible to look away. I was completely drawn in by the image he was.

The entire scene seemed magical; like in those seconds I was blessed to watch a rare moment in nature. A whale breaching, two bear cubs snuggling, and my son changing the set in his insulin pump…all beautiful moments not seen often by the world.

My son was saving his own life.

And nobody even knows but us.

The scene changed quickly as more people entered the room. One was bobbing an apple up and down in his hand and the other was busy discussing his day. Neither seemed in awe by what B was doing. It struck me: this really is our normal.

In came the youngest and with a clap of his hand on B’s shoulder he says, “Save some of that insulin for me.”

“Sure…I think there’s a couple drops left.” B slid the practically empty insulin bottle to his brother, clearly amused in his brother’s disappointment.

L unscrewed his pump from his abdomen and walked over the refrigerator.  He scanned the contents of the shelves, absentmindedly grabbing a bottle of insulin and nestling it in his armpit.

“What time is dinner?”

“6:15” I said wistfully, my head resting on my hand as I treasured my boys.

L reached back in the fridge and gabbed a sugar free Jello, “This will hold me over.”

I walked over to the Diabetes supply cupboard and surveyed the contents. I realized we needed to order pump supplies. I had no idea we are so close to running out. I slid open the drawer where the boys toss their sharps and was taken aback by the pile before me.

Didn’t I just clean out this drawer?

All the set changes, all the finger pricks, all the texts asking my boys if they bolused…it’s all invisible to the world. Sometimes it's even invisible to me. Scenes like the above wash by me without a second thought, and before I know it, there’s a pile of sharps again.

It really is Our Diabetic Life.

But I’m thankful that once in a while I can see the beauty in it and appreciate the work my boys put in day in and day out. Even if they act a little later than I want them to…at least they act.

I haven’t changed a pump set in years. I poke fingers only at night, and even then it’s beginning to seem foreign to me.

I used to save my boys’ lives, but now they save their own.

The enormity of that statement is mind-boggling…

Yet completely imponderable too.