Magic always comes with a price.

I used to be an avid watcher of the ABC show “Once Upon A Time.” Within the show, the character Rumpelstiltskin could perform wonderful acts of magic, but never without first warning the person whose wish is being granted, “Don’t forget, magic always comes with a price.”

As I look back at my meetings with Novo Nordisk and Medtronic last spring, I can’t help but feel conflicted. They are good people, trying to do good things. I promise you they aren’t virtual Ebenezer Scrooges. They are people who genuinely want to make a difference in the world.

But…(you knew that was coming,)

Their magic always comes with a price.

The fact is, you can’t serve three masters. These companies feel like they can serve the patient community, their shareholders, and the insurance industry, without conflict…but the truth is, it’s impossible.

The greater master will always be the bottom line, and because of this, when it comes down to the wire the patient will always be the one to get the short end of the stick.

We have a couple insulin companies monopolizing the market on the medication that keeps my boys alive. Choices within the confines of this disease are severely limited, yet they are being taken away from us more and more day by day.

Insurance companies tell me what insulin my children must use if I want them to pay for any of it. They negotiate prices and who loses? My children. Everyone is touting the words, “Better outcomes,” yet they aren’t giving my doctor and myself freedom to choose what would produce those “better outcomes” for my children.

People are choosing medications not because they are the best for their health, but because it’s the cheapest, and because it's the medication their insurance company is telling them to use.

It makes me throw up in my mouth thinking about it.

I don’t care how many times anyone in the free world says it, Humalog and Novolog are not the same. Novolog produces better outomes for my children, but my insurance company’s preferred insulin is Humalog…so we pay A LOT more money because my doctor and I both know what is best for my boys, and we are acting on that knowledge.

And now it doesn’t stop with insulin. Now one very large insurance company is only covering one kind of insulin pump.

And this kind of pump only links to one kind of meter.

And this one kind of meter uses only one kind of test strips.

Choice? We have no choice.

When it comes to Type One Diabetes we are already strapped with very limited choices.

Three kinds of fast acting insulin.

Four different pump companies.

Just a few major blood sugar monitor companies.

And still, no one at our pharmacy even knows what a Blood Ketone Meter is. (Which might be for the best, because many insurance companies don't cover Blood Ketone Strips as they retail for $10 a strip.)

We’re shoved into a corner, paying three times the dollars we did before, and the people doing the shoving are shrugging their shoulders and saying, “Not our fault.”

So what can we do? We can’t fight back and say, “I’m not buying insulin anymore!” (Because, death.) Sure, we can stop using insulin pumps and move to MDI, but I know in my childrens’ situation that would totally suck.

And pharma knows that too.

They know they can do whatever the hell they want, and play these games within the United States Healthcare system because WE CAN’T DO ANYTHING ABOUT IT.

Die or infuse insulin.

God help us.

All the good these big companies are doing in the world is awesome. Seriously, they do a lot of good. But my boys are the ones paying the price for that good….to the tune of $400 a vial of insulin, $7000-$10,000 for an insulin pump, and $1 plus for every blood sugar test strip that they use.

The Healthcare System in the United States is broken.

It’s not going to be fixed without a fight. Insurance companies won’t fight it. Pharma won’t fight it. Only we can fight it.

It’s time our community packed a bigger punch.

Tomorrow: more information to come. We will be introduced to real life stories, and make some real life decisions regarding what we are going to do about it.

We, meaning you. Meaning, all of us.

Let's face it, if you have a butter compartment full of insulin right now, you are blessed. There are some who do not. There are some who make choices between food on the table or insulin, rent or insulin, paying the electric bill or insulin. I promise you, if it were you considering rationing insulin, or if it were your child's life that you couldn't afford  to save every day...you would stand up.

It's time.

Our Diabetic Life: Puberty, in drawings.

Everyone knows puberty is a journey.

Living the journey is emotional

 Watching the journey is exhausting

But when Type 1 Diabetes is added to the sauce, the recipe to success becomes near impossible.

The outside of the body changes, yes. 

Emotional expressions become more aggressive, yes. 

But inside. INSIDE is where the real battle is fought...

 The need for insulin is increased as much as 400%. Which means you must give your child the same amount of insulin that would have surely killed him only a month before.

 And since you are pouring buckets of insulin into your child, the need for vigilance is paramount.

Thank goodness for blood sugar monitors, right?

But here’s the kicker:

The child, now in the puberty state, has completely lost the word vigilant from their vocabulary.  In fact, they’re pretty convinced they don’t have diabetes anymore.

 What are we as parents supposed to do?

We ask.

 We remind.

We beg.

To add insult to injury…they eat. Like every minute of every day.

So blood sugars go up, which means when they actually do check their blood sugars, they make no eye contact with you afterwards.

In the beginning this whole scenario was frustrating.

Now it’s a party.

The party doesn’t last long though. Eventually an Endo appointment has to happen.

Wah. Wah. Waaaaaah.

Thankfully, it doesn’t last forever. Even though it feels like it.

The eye rolls do fade and they begin to start doing things on their own again…

As a wise someone once said, “It all works out in the end. If it hasn’t worked out, it’s not the end.”

Until then…keep watching them when they sleep. It’s super creepy, but they’re cute and innocent while in this state.

It will keep you going.

That's all I got.

Godspeed.

It's in me.

I had a vivid dream last night that culminated in a scene of me being surrounded by those I loved: My husband. My children and my step-children. My parents, and in laws. My sisters, brothers, sister in laws, brother in laws, friends, family. The little boy who plays with my youngest from down the street. People from church. People from the DOC…

I looked around at this hodgepodged group of people and wept.

Wept with gratefulness, that I have them in my life.

And when I woke, the feeling stayed with me.

Last night my family sat around the living room and took the time to, one by one, recognize a tender mercy that recently occurred in our life. As we each focused on a small blessing in our day, the mood in the room changed immediately.

This morning I rolled over in bed after my husband left for work and looked at a pair of shorts he had tossed next to the dresser. That crinkled piece of clothing evoked an unspeakable wave of emotion. I love the man that put them there. Those shorts were a symbol of his presence, an acknowledgement that I have someone to share my life with. I’m not alone.

I’m not alone.

All this to say…it’s there.

Gratefulness.

It is in me.

And this gratefulness is bigger than the mess that’s inside of me. It’s brighter. Truer. And will ultimately help in my healing, I am sure.

I’ve been inspired so significantly by the last 24 hours that I wanted to come here and pay homage to the good in my life.

My brightest light:

Right now that is my husband.

I’m so imperfect.

But so is he.

And we glory in it.

He accepts me and loves me in an honest and tender way. I am safe to be who I am and feel what I feel. It’s not always pretty, but he loves me anyway.

And because of this unconditional love, it’s safe for me to love him unconditionally back. My expectations of him are real. We entered this marriage promising to accept each other for who we really were. We promised not to pretend we were anything other than our authentic selves.

And authentically? We’re kinda a mess. (He’s a sexy mess, so that helps :)

But we’re able to take the shame away from the mess by communicating, understanding, and forgiving.

And by promising to always try to be a little bit better every day, or at the very least…just try.

The hard things in life can come, but our feet will stay planted.  We’ll hold each other through it, and ground ourselves with our faith.

Us coming together was not an accident. We absolutely know that.

I cannot deny that I’m here today because of tender guidance from my Heavenly Father. Believe what you will, but I know what I know.

So when things get hard, my husband and I are able to look at each other and know…it’s going to be ok. Because we know we were brought together.

We absolutely know it.

The broken pieces in me, he fills up. And his broken pieces? I hold on to them so he can stay together too.

Why things have to be so hard? I’m not sure. But through every gust of wind, we draw closer.

That is my greatest gift.

A few years ago I was interviewed by Sanofi.  They asked me, “What is your idea of happiness?”

I replied, “Love. Knowing I am loved, and loving others. I can’t think of a worse prison than thinking I am alone and completely insignificant.”

They followed up with, “What do you most dislike.”

“Bitterness. Hopelessness. Negativity.”

No wonder I’ve hated myself these past months. I’ve embraced qualities that I most despise.  I’ve viewed myself as insignificant; failing to live up to the vision of life I was most expecting. I’ve felt bitter, helpless, and instead of the Meri that embraced positivity, I edged toward the other side of the force…negativity.

Doug builds me up, and then I fall apart. (Just like the song,) And then he builds me up again.

I’ve been focusing on the falling apart, and my failure in it, instead of glorying in the building up.

I’ve always got back up from the setbacks. How come I haven’t been able to see the victory in that?

And even at my worst, I’ve been able to build my husband up. There is strength in that. Why haven’t I recognized it? I recognize it now, and this time as I begin the building process again, I feel the difference in my structural strength. Because this time I’m not letting Doug build me back up alone…this time I’m helping too.

We build better together because we’ve lived long enough to know life is too hard and messy to travel without empathy and love.

I know I am blessed.

I know it.

I’ve realized that I can’t stop the chaos that is around me…but I can step out of it. I can choose not to be caught up in it, and serve as an observer rather than a constituent.

It will be a process to fully embrace this, but now that I know that it’s possible, I will do it.

I’ve stood up.

My dream last night helped me look at all of this from another angle.

I have love. I'm so grateful for it. What else do I really need?

As always: forward.

Admission.

My hands twitch. They yearn for release.

“But I’m broken. I can’t.”

I’m doing dishes and my eyes glance again and again over to my laptop, turning in circles, tracing the edges of the keyboard.

The warm glow of the screen calls for me.

“But it’s not just about me. I can’t.”

My body aches. It demands the kneading of emotions. It must disperse the tension from my shoulders out my fingertips to function.  My neck suffers from holding in the words.

“But it’s not pretty. I can’t.”

And then my husband looks at the twisted, uncomfortable figure I’ve become and gently says, “Write, Meri. Don’t write for them. Write for you.”

“But. I hate myself. I hate who I am right now. I can’t.”

But somewhere deeper inside myself is a whisper that I can’t ignore. Over and over it begs me to let it out. “You can, Meri. You must.”

I tossed in my bed this morning. Listening to the whisper grow more resolute. And finally, my stubborn, stronger self knew that it had to be listened to for me to move on.

More than anything…I want to move on from this.  It’s very clear that nothing can change if I don’t look at this in the disgusting, snot nosed face that it has.

So Hello. I am here.

Messy, broken, ashamed.

A shadow of the Meri I was only a year ago.

This year I’ve gained 15 pounds. I marvel at the notion, as I’m sure I’ve excreted a good 1 million pounds in tears and mucus. Hard as my life has been, this past year has been the hardest.

When Ryan passed, yes that was hard, almost unbearable…but I was carried. I was assured. I had control over where my life was going to go. But now, it seems that nothing is in my hands.

Digression: I’ve now watched the curser blink at the end of the last sentence for 10 minutes. Is that true? Do I not have control over anything anymore? That can’t be true. But I’ve been telling myself this for the past 10 months now. I’ve been telling myself this as though it is gospel.

Redirection: I have a problem. When I lost Ryan, I became obsessive about some things. Subconsciously I realized that things happen…life changing, terrible, catastrophic things happen and there is nothing I can do about them. So the things I can control? I’m going to control the hell out of those.

My house? Spotless.

My schooling? Straight A’s only. Perfection, always.

My relationship? Gorgeous. Honest. Unconditional.

And then I married Doug. I moved to Indiana. And I was ready to be the happiest I ever had. I was ready to take this blended family and make us an oasis of comfort and joy.

But creating an oasis for 6 teenagers and 3 young adults is impossible. They don’t need me, or at the very least they would never admit so. Drama. Sadness. Depression. Worry.  They don’t experience things logically, and they were floundering through their own hell…some suffering from an unamicable divorce, and some from the surprise death of their father…and disease…

I couldn’t fix those things.

And I felt like a failure.

I’m a mother, I’m supposed to make things better.

Control my surroundings.

Control.

Perfection.

Everything seemed out of my hands.

But the house. The house was in my hands.

So I cleaned. I mopped, sometimes two or three times a day. Loads of laundry every day. I made dinners, and cried when they weren’t hungry to eat them. Do they not know that this is the only way left for me to show them love? Hours of cooking only for them to shrug and say, “I’m good.”

I broke.

I didn’t want to feel anymore. I remember saying that over and over to Doug, “I just don’t want to care.”

I was completely helpless living in a body that demanded perfection of me.

Failing.

It was unbearable.

So I went to the doctor and did what I swore I’d never do: I asked for help in the form of a pill.

“I just want to stop caring.”

And the pills helped a little bit. They took the edge off my failure. But the failure remained nonetheless.

As did the chaos of Doug’s ex-wife.

The tornados of her wrath came with no warning, and left me suffering from severe anxiety, terrified of the next weather pattern, angry for not being stronger, and most importantly…the feeling of failure.

I tortured myself because I couldn’t fix problems that I didn’t create in the first place.

To be honest, I still do.

And I know that isn’t logical. I know that if I do my best it is enough.

I know these things.

I just don’t feel them anymore.

I’ve trained my body to listen to the worry, to the failure. It’s second nature for me to be angry now.

Who am I?

I’ve never thought of myself as an angry person.

But I’m angry now. Angry that I have turned into who I am. Angry that hope has gone to the wayside. Angry that all it seems I can do is endure.

Enduring is a prison. I don’t want to endure. I want to LIVE!

I want to live.

I want to live.

I am pounding at the walls of my prison. I am finally fighting back. I’ve stopped taking those pills, the withdrawal has been brutal. But, I need to feel. I need to feel to fight.

I need to accept that my best is good enough.

I need to stop beating myself up. My incessant punching has swollen my eyes shut and distorted my view of the world.

I used to walk out of the house and cry at the beauty of what God has created for us.

I want that Meri back.

I’m standing up and fighting for her again. It hurts to get up though. I’ve been punching myself for so long, I fear I’ve made permanent scars. Hopefully therapy will fade them a bit.

This blog is my first real step to healing. I need my friends, I need my family. I need my community.

I need to get better.

I deserve better than this prison.

My husband deserves a wife that doesn’t bow to the PTSD of past catastrophes.

My children deserve a mother or a step-mother who instead of tears in her eyes, has hope.

Hope.

It’s been so long.

“Hope, my old friend. There you are.”

“Come lay with me."

"We need to talk.”