Tuesday, July 25, 2017

A 4am plea to Insulin Pump Companies.


Let’s get real here.

There is an insulin pump defect that needs to be addressed. The defect is mostly affecting teenagers, Although children and adults everywhere are susceptible to the consequences this defect provides…

Listen.

Let me lay this out for you. I’m going to talk about teenagers here. (Not about your teenager, I’m sure your teenager is an honor student, and perfectly obedient to all alarms, and does most everything right, and would never even fathom what’s about to go down here. Ok? This probably doesn’t apply to you…but you can keep reading. For pity, or you know…to boost your self-esteem….I get it…)

Anyway.

I’m fully aware that teens’ frontal lobes haven’t completely connected properly…they’re victims until the mid 20’s.

I know they’re at a disadvantage. I know it isn’t their fault.

Most…

Some…

A lot…

Teenagers as a collective?

YES!…teenagers as a group can’t do all the necessary remembering all the time.  Their brains just don’t have the synapsis for reason to travel upon. 

Sometimes they forget. Or procrastinate.

But...

Ok, listen.

It’s 4 am.

I’m just a girl, standing in front of all pump companies, asking for some love. A little help here, please?

When a pump runs out of insulin, there needs to be epicness.

Sure the synapses are still working on creating their paths from one side of the brain to another, but for teens there is one synapse that has a sure, well connected path: The Embarrassment Synapse.

When insulin runs out on a pump…you guys need to make it embarrassing for teenagers.

So they’ll actually add more insulin.

BECAUSE THEY IGNORE THE ALARMS.

Listen. LINDA, LISTEN.



You’re sweet little “No Delivery” notification isn’t cutting it.

You need to be more creative.

There needs to be a noise. An unbearable noise. One that will only go away once fresh insulin is added to the reservoir.

Screeching cicadas?

Weird Al Yankovich singing “Ice Ice Baby?” But like, not making the words funny…just straight out singing it over and over and over again.

Or I don’t know…I’m just snowballing here…but maybe a hologram can pop up from their pumps of their mother telling stories about potty training them… at age 8?

Something super embarrassing.

ListenListenListen

It HAS to be embarrassing for it to work.

Because if it happens and it’s embarrassing the first time? There will not be a second time. Period. (I mean, I know there was a period there, but I had to write it out for emphasis.) 

Teenagers will avoid embarrassment at any cost.

Super important reiteration: It can’t stop. The noise, the hologram, all of it…it must continue until the new insulin is in the pump. Even if the battery is taken out.

There must be no dismissal.

Listen.

Linda.

Please.

I am tired of waking up in the middle of the night to empty reservoirs.

Sure, I make them change it themselves. I’m not going to make it easier for them to ignore…

But I still have to get out of bed and make them lucid enough to understand the words, “YOU HAVE TO CHANGE YOUR SET RIGHT NOW. NO. INSULIN.”

It’s harder than it sounds. There was one time one of them went downstairs and just fell asleep on the couch.

Also, waking them completely wakes me.

It doesn’t happen all the time so don’t get all huffy, lecturing me on the divine nuances of parenthood.

They are teenagers. THEIR BRAINS ARE AT A DISADVANTAGE.  It’s a scientific fact.

Yes, it's super frustrating when it happens. And even though it isn’t all the time, or all that often…It FEELS like all the time. Ok?

Look it.

We need magic.  Magic help.

You can do it pump people. YOU CAN. 

I totally believe in you.

  

Wednesday, July 12, 2017

7 years later, 19 years in.


The post titled, Still a Little Broken, popped up in my Facebook memories today. I read it as an outsider, sad for the girl that wrote the words. But then the memories came creeping back in. The brokenness that I lived with returned to me in powerful waves. I remembered clearly the heaviness of the day to day. I saw perfectly the worry that affected the person I was.

I was more broken than I admitted to you that day.

But life molds us. And as we move forward, perspectives change. I presume aging has something to do with it too. We experience unthinkable tragedies and we survive. Fear hardens and turns into strength. Knowledge becomes power. And most of all, the brokenness becomes a powerful cohort.

Everything that I've experienced in my life has given me the tools to cope with the background music of Diabetes.

I don't let it control my emotions like I once did.

Maybe I'm numb.

Maybe I'm smarter.

Maybe I'm dumber.

But somehow, not on purpose, I stopped letting Diabetes control my entire being.

I was able to let go of the debilitating guilt. (Not all the guilt, I'm a mother after all.) But most of it.

I Don't fault myself for living the way I did for so many years. In fact, I probably needed to be that way. It hurts me to think about. It was hard.

But now I can look at the numbers without fear, or anger.  Because I have to. If I took them personally I would go insane. They come to me every five minutes, twenty four hours a day. The numbers will never stop.

Like driving a car we constantly adjust the wheel to keep things going in the right direction. Even when going down a straight highway we need to adjust...there's no taking the hand off the wheel. We try not to veer off the road, but know if we do, we have the tools to fix the car and move on.

We'll always be driving together. As the kids grow they take turns taking the wheel, but I'm there if they get tired, or reckless. Someday I'll be kicked out of the car, but right now I'm still riding along...

And somewhere along the way, I don't know when it happened, I realized that we have control over the stereo. Not diabetes. All it took was our changing the station.

The background music is what we want it to be.

It sounds easier than it was. But it was a simple concept nonetheless.

I don't let Diabetes change who I am anymore. But it built me.

The person I am today stands on the foundation that I built with blood, sweat, and tears for years and years.  Though I don't stand on the foundation as the slave that I was. I stand proudly on my work and own myself now. I am the ruler of my life.

Well, most of the time. Life is crazy after all.

More than anything I just want those of you who are building your foundations to know, that later, you'll be thankful for the work your putting in now.  To each of you in all the phases of your lives, someday the worry you hold will be an asset, not a liability.

"Everything will be ok in the end. And if it's not ok, than it's not the end."

I use to tell myself that all the time.

Now I don't have to, because I know it.



Cheers to you and all your hard work.

You are loved.


Monday, June 12, 2017

Reenactment: Teenager Set Change


I don’t usually post about teenager stuff, but this post is written with permission by my 13 year old.

When you read it, you’ll see why.

Saturday morning I was woken up by said 13 year old. He had filled his reservoir and asked if I’d be willing to pop his set in. He’s not a big fan of the “popping it in” part, and insists it doesn’t hurt as much when I do it. When I’m not around, he does it…but it was Saturday, so…of course.

I was not quite awake, but I cleared my fuzzy brain best I could and popped it in whilst still lying down.

I could see the relief on his face. “Wow. That was a really good one!”

After this he went to eat breakfast.

The following is a transcript of what transpired next:

“Why the two arrows up on the Dex? Did you bolus for breakfast?”

“Yes, Mommm! I bolused!”

An hour later.

“Kid. Still two arrows up and now you’re in the high 300’s.”

“Do you want to check my history? I bolused! And I bolused BEFORE I ate.”

“Well, give yourself a couple extra units. Maybe you didn’t bolus enough.”

"I'll give myself four extra units. Chances are good I'll eat a granola bar soon."

An hour later his Dex said “High” with an arrow up.

"Did you eat a granola bar?"

"Nope."

"Did you eat anything other than breakfast this morning?"

"Nope."

“Did you bolus for breakfast before or after the set change.”

“After.”

“When I popped your set in, you looked really happy. Did you even feel it?”

“No. It was amazing," he said whistfully.

“We’re going to have to put in a new set. This one must be kinked.” I began to get up off the couch when I felt him grab my hand.

With both his hands cradling mine, he looked hopefully into my eyes...

“Mom. Listen. That was the best set-change in three months. Please don’t take that away from me...”

“And that’s why it has to be changed. It probably isn’t good. You’re over 400.”

I don't look back but I feel the twang of a glare hitting me in the back of my head.

I insert another set and gently peel back the old one to see if it was bad.

It was perfect.

“Crap.”

“NOOOOO! I can’t believe it. I knew it was good! Oh my gosh. Apology. I think this deserves an apology.”

“Not so fast. This still doesn’t explain why you’re going so high. Why did you change your set so early this morning? Was it low reservoir, or out of insulin?”

“It didn’t SAY ‘no insulin.’ You know, with words.”

“How many units did you have left?”

Silence.

“It said ‘- - -‘ didn’t it.”

“Yes. It did.”

“Why didn’t you change your set when you got the low reservoir alarm?”

“Mom. It was Midnight! I was tired!  Besides, it said I had 2.9 units left.”

“Dude. Your basal rate would eat that up in an hour and a half.”

“12 units? Really??!”

“You said 2.9 and now you’re saying 12.”

“It’s all the same.”

“Do you know what your basal rates are? Do you even know what a basal rate is? Your pump gives insulin even when you don’t push buttons. If there is no insulin to give, you get ketones….OH MY GOSH. You probably have ketones! That explains it!”

“I know what basal is, and I don’t have ketones.” (eye roll)

“Oh. We’re checking!”

As I take out the Blood Ketone Monitor he says,” This is a waste of a ketone strip. It’s going to say I’m 0.2”

“Oh, we will see!”

We watch the monitor count down, and at the end of it? 0.2

“Crap! I mean, Awesome!”

“Apology. I want an apology!”

“DUDE. I want an apology! You didn’t change your set last night when it said Low Reservoir!”

“IT. Was. MIDNIGHT. I was really tired.”

“You know I’m going to blog this right. This is blogging gold.”

“Go ahead. I was tired. Is that a crime?”

“You can’t live without insulin, kid. Diabetes doesn’t get tucked in at midnight. It devours insulin 24/7. Diabetes doesn’t sleep!”

“I’ll apologize if you apologize. You took out the perfect set.”

“If you want me to apologize for being an awesome D Mom, then yes, I apologize.”

“It didn’t need to be changed! You need to apologize for changing it!”

“I did what I had to do. I was trying to keep you safe. I won’t apologize for it. You on the other hand…”

“I had 2.9 units! There was insulin in my pump when I went to sleep!”

“GIVE. ME. YOUR. PUMP.”

He hands it over defiantly.

“Your basal rate right now is 1.65 from midnight to 4am, and 1.85 from 4am to 9am. Puberty demands a ton of insulin. Now lets do the math. 1.65 units for three hours is 4.95 units of insulin. Add that to the next five hours at 1.85 per hour and that is 14.2 units of insulin needed while you slept last night. Take away the 2.9 you said was left, that means there was 11.3 units that was not delivered that your body needed.”

There is a long thoughtful pause, and then he says with a far off look in his eyes, “Whoa. It’s official. I’m a teenager.”

He threw himself into my arms and gave me a long hug. "I'm sorry mom." 

I whispered into his ear. “I’m still blogging this.”

He whispers back. “I know.”


Wednesday, June 7, 2017

A life of "probably"


I’ve lived in this world of “probably” for the last 19 years.

“He’s probably ok.”

“He can probably get through the day safely.”

“He’s probably going to go low.”

“He’s probably going to need extra insulin.”

“That’s probably enough food.”

And every single morning when I open my eyes:

“He’s probably alive.”

I’m aware that nothing in life is for sure; in fact that is how I survive my life of probably…

But my “probably” and a family’s “probably” that doesn’t have children with a chronic disease live on completely different “probably” planes.  Our percentage of ideal outcomes very widely.

Type 1 Diabetes is one big fat probably.

Nothing ever is for sure; meaning random variables are always present.

“My children are going to probably live through the day.” It’s a truth for every parent. It’s an ever-present reality for me.

That is why the Dexcoms my boys’ wear have been life changing for me.

I wake up in that cold sweat in the middle of the night, wondering if I slept through my alarm, and in that very instant I can look at my phone and see that all is well. I can glance at my phone in the middle of a movie and see if my boys at home remembered to bolus for their dinner. I can be driving and look at my watch and know that my college student is safe.

I can see if their sugars are trending up. I can see the double arrows down indicating quick action is needed.

I can breathe better, because those moments when I have to hold my breath are fewer and far between.

How can I convey the monumentality of this?

After using Dexcom for 6 months our insurance denied our reorder.

This has never happened to me before. Our family has always been extremely blessed to have insurance that would pay for everything, and have doctors that would know exactly what to say to make sure things got covered.

And here I was facing the end of those extra breaths. I knew we could survive without it, obviously, but I also knew our quality of life was better with it.

Or maybe it’s fairer to say, MY quality of life was better with it. I can’t speak for my teenagers.

But for me? To have the background worry paused every now and then brought a soft breeze of normalcy that I haven’t been able to enjoy for a long, long time.

I didn’t take the Dexcom numbers for granted. I knew they were a gift. But now to have that all taken away?  (Cue “it isn’t fair” rant.)

But thankfully, I had met a new friend last month willing to pass along some sensors.

And thankfully too, Dexcom called us because a friend had passed them along this tweet.


Also thankfully, our new Endocrinologist here in Indiana is a fighter and even though it took almost 6 weeks…I’ve received word that the Dexcom supplies have been approved for all three boys. 

Though nothing is just that easy. I called the pharmacy to see if they’ve processed the order and they said they are waiting on a fax from our Endo with the approval. I messaged our Endo and they haven’t actually received the approval yet. They received it verbally, but not in writing.

It will probably work out.

The problem with “probably” is it’s not a passive thing.

Probably takes constant effort, there is no sitting back in a big comfy chair, forgetting about Diabetes and expecting everything to “probably” be ok.

The fates don’t have any control in the direction of my teenagers’ blood sugars. Only effort and thought does.

And with the Dexcoms, it takes a lot less effort, and a lot less thought…for my boys.

For me, it has enabled my position as my boys’ PDS. (Personal Diabetes Secretary.)

It’s a job I’ve recently taken on to help my struggling teenagers out.





I’m probably annoying them.

But when I remind them, they take action.

And that is a big win.

Thank you, Dexcom.

I hope with all my heart that we’ll (probably) never part.




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.

Inevitably...supplies 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.

Forward.

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.

MERI