Friday, March 30, 2012

A little advocating goes a long way.

I hear it all the time.
"I wish people were more educated about diabetes."
"I wish there was more advocacy for Type 1 Diabetes."

"I wish our voices were heard."

It might not seem like it, but at this moment a small wave of advocacy has formed off the coast of California.  A group of bloggers and advocates from the DOC are meeting with the Bigs at Medtronic and they are making your voices heard.  They are telling them your hopes and dreams...and Medtronic, I am sure, is echoing it all back to them.

You see, it may not be obvious now...but there is a small army on the move to change the world and their perception of diabetes.  You might not be aware of them...but by the time I get done here, I hope you will feel a bit more uplifted knowing there others out there working to get the word out.

On my sidebar there is a button that says "I am a member to DiabetesAdvocates."  What do they do?  From the website it states:  "We help people who have diabetes and their loved ones realize that they are not alone. We help the diabetes community by sharing our personal experiences, spreading the word about diabetes news and treatment options, and helping to inspire a dialog between a diabetes patient and their medical team. We accomplish this through diabetes blogs, diabetes social communities, videos, radio shows, books, newsletters, and live events.  In 2011, the Diabetes Advocates collective will reach more than 6,000,000 people touched by diabetes."

If you read the list of people in there you will be amazed at the reach this community has.  Within its pages you will find Cherise, who founded DSMA, which stands for Diabetes Social Media Advocacy.  There is a Website and a RadioProgram, and an amazing Twitter Chat that happens every week.  It is an easy and fun way to get involved in the community.

Also within the DA pages you will find Kim Vlasnik.  She founded the "You Can Do ThisProject."  It is an awesome collection of videos that encourage and let you know that YOU ARE NOT ALONE.  How powerful is that?

There is Manny Hernandez who founded TuDiabetes and The Diabetes HandsFoundation.  He is pretty much the king of advocacy.  :)

And is Brandy Barnes who founded Diabetes Sisters.  Diabetes Sisters is a national nonprofit organization whose mission is to improve the health and quality of life of women with and at risk of developing Diabetes; and to advocate on their behalf. The organization offers a variety of online and in-person programs focused on the unique needs of women with Diabetes.

I could just copy and paste the entire website onto this post, but I think it would fun for you to explore the website yourself and discover the many many voices out there.  They are all raising awarness, and their reach is far and wide!

One small nugget of advocacy can cause a ripple effect.  It creates a bigger and bigger understanding throughout our community and our world. 

Just last year many Diabetes Advocates flew to Dubai for the World Diabetes Congress.  They were invited there and the ripples of their visit is still being felt throughout the world.  Our voices may seem small, but they are being heard.

I know I'm not in Dubai.  I know I'm not reaching the masses and educating on the scale that I wish I could.  I'm not today...but maybe someday.  And until then I will type my voice and my feelings here on my blog.  One small step at a time.  One ripple effect at a time.  Helping one person at a time.  It all makes a difference.

My heart hurts that I had to miss the advocate forum in So Cal today.  But I'm overcome with gratitude for the people that ARE attending.  I know they will pass along the information we want Medtronic to hear oh so badly.  The wave of advocacy is gaining momentum. 

You can be a part of it too.

Speak up.  Say something.  Hug someone and tell them they are not alone.

It all makes a difference.

It really, really does. 

(To follow the DOC at the Medtronic Advocate Forum today,  to to twitter and follow #MedtronicDAF)

Wednesday, March 28, 2012

They bleed.

As a young girl, I was hardwired to believe that the sight of blood was a bad thing. Bright red meant danger.

Blood meant Band-Aids, Neosporin and warm washcloths to cleanse the wound.

Blood meant that someone was injured. It meant pain. It meant tears.

It meant that the protective armor of a scab would come to protect the wound while it heals.

Blood was never a good thing.

And now here I am, a mother of three boys with Type 1 Diabetes. My fearful perspective of blood has been diluted. So much so, blood doesn't evoke the feelings of danger that it once did.

Blood is now a symbol of the boys testing their blood sugar, and as doesn't faze me.

I washed blood off the front door today. Seriously, who does that?

How did it get there?

Was it from a quick test before running out the door to school?

Was it from a quick test before riding a bicycle?

Was it from a quick test before running out to scouts?

I don't know. All I know is that the blood is a good thing. It means they are testing. And testing means safety.

When I wash the blood off counter tops, cabinet doors, light switches, and memories often flicker back to the time when blood would startle me.

And after I remember, I then wonder what another person would think if they saw it.

Would they be horrified? Would they think it was disgusting?

I assume that they would.

Unless it was the blood of their own child, deep down I am assured they would feel differently if that were the case.

Part of me feels like I am supposed to be disgusted. But the numbness doesn't allow me to feel that way anymore.

Blood is now sacred. Every drop I see fall...every drop I clean up...I have the deepest respect for.

Blood doesn't mean death or fear or harm as it once did.

Blood means life.

And my boys live.

The blood on my door tells me so. My soul stirs with happiness because it is so.

(A blog post all about diabetes?  How is that for Normaling?!  Booyeah!)

Monday, March 26, 2012


Ryan slipped off to bed early the other night, so I grabbed a blanket and spent a couple hours watching 30 Rock episodes OnDemand. I'm not an avid watcher, but the sitcom provided me with a host of mindless giggles, which totally served its purpose of keeping my thoughts on lighter things.

In one particular episode, Jenna was uber excited that her boyfriend was coming back into town. Apparently these two had a pretty hot and heavy/crazy-like relationship, and as such she was expecting a long adventurous night with her man. Turns out though, they were both so tired from their long day they ended up falling asleep before anything crazy could happen. The next day, in an effort to make falling asleep seem not so lame, they gave what happened a "kinky" new sub name: "Normaling." They spent the next few weeks doing things that only "normal" couples would do. Going to Bed Bath and Beyond, and spending hours deciding where the best place in the living room a certain chair would fit best. In the end it was realized that "Normaling" was really them transitioning into a steady, normal relationship. It wasn't this exiting cutting edge phenomenon after all...

It seems to me that this is what Ryan and I are doing right now.

We are Normaling.

We spend our days thrilling in the fact that we are doing perfectly normal things. It seems unnatural these days to go to the store and have a conversation about the succulent tastes of different kinds of oranges. It seems unnatural, but we partake anyway. Awkwardly, yet happily in what seem to be our "roles" in this episode of our life.

We are playing the part of normal.

"How are you feeling, Babe?"

"Hanging in there. How about you?"


"What would you like for lunch?"

"Oh Lucchesi's deli sounds good to me!"


"Oh, we are out of eggs."

"I'll run by the store later this afternoon."


Blogging this post right at this moment?


It all FEELS like we are reciting lines from a script.

We know how our days are supposed to play out. We know our cues, we know our lines...and we spend our days convincing each other that our performances are natural rather than scripted.

I know as we continue to play our parts, life will gradually become less awkward.

As an extension of all this normaling I feel as though I'm an understudy in my pancreatic duties as well. Changing sets, counting carbs, nighttime checks...they don't come as naturally as they used to. There's no flow.

The other day the boys ate lunch and I didn't have them check their sugar before. I know, "GASP!" I even made sure there were strips with me before we left the car to go into the restaurant. But as we sat at the table...everyone was so happy, and so talkative...I got lost in our "Normaling," and never had the boys do their checks. Which...I know...there are crazier things...

But , it just serves as a small example that we need to relearn "our normal."

No, I don't think it is a bad thing that diabetes is on the back burner keeping warm while we are feasting on normalcy. I just hope I don't faint when the leftover A1C's come looking unappetizingly warmed over in a tupperware bowl next month.

Next month seems years away though.

Right now I can only think about today.

I'll worry about tomorrow, tomorrow.

I think under the present circumstances...that is what a normal person would do.

I think.

I'm still trying to figure this whole "Normaling" thing out.

Tuesday, March 20, 2012

Choosing hope...again.

I'm standing still with my arms stretched out on either side of me.

I am holding two ropes. One in either hand. Each rope being pulled so my arms are taut.

On one side I have the pull of an army of friends and family. I have my faith and my hope.

On the other side I have despair. Fear. Pulled by a couple tiny thoughts. They are embarrassingly strong.

And as such. I stand here still.

Looking side to side it is a no brainer. Hope will win. I see the good on the hope side. The smiling faces full of love and prayer. Thousands of faces.

And on the other are pathetic thoughts that I let seep into my unconscious. Why do I allow it? Hope cannot win if I let the fear contend. I'm angry at myself for letting the fear become so strong.

It all seems so hopeless, being stuck in the middle.

One has to win.

And as I sit here now pondering the opposite forces that have taken over my life, it has occurred to me in this moment that I have all the power.

I can let go of either rope.

I can choose hope, or I can choose fear.

I choose hope.

I've chosen hope before, but it is amazingly clear to me now that I need to wake up every morning and make a NEW conscious decision to hope. Or to not.

THIS morning I choose to keep the faith that everything will be ok.

THIS morning I will choose to believe that there are bigger forces at work. Forces bigger than cancer.

THIS morning I choose to let go of the rope of fear and let the forces of hope propel me into their arms.

Hope is a choice. Faith is active. I can't sit here in limbo waiting time to pass. Waiting for answers.

I need get up and actively hope. Actively let go of fear.

TODAY I will. For me. For Ryan. For the boys. I am opening up my hand and letting go of that rope.

And tomorrow I will wake up and make that decision again. And the next day again.

And again and again and again. Until hope is all that is left...and there will no longer be need for the choice.

I can do it.  I will do it.

It seems, there is no other choice.

Monday, March 12, 2012

An ocean of emotion.

When your emotions are an ocean and you are damming the flow with Kleenex, one has to tread lightly at all times. But when monthly hormones get thrown into the mix? Forget about it. The ocean's tempest cannot be contained.

I'm a wreck.

All the feelings that I have been able to keep in check have risen to the surface.

Where is the peace?

All I can do today is pray.  Oh how I wish I could look into His eyes and hear him tell me, "All is well."

Despite my substantial support group, today...I felt alone. I confided in the Lord that I felt guilty that I wished our relationship was more tangible. I recognize that faith is hope for things not seen...but brain is taken over by human hormonal wiles. I am hurting.

But as I've learned so many times before, the man upstairs always finds a way to send me his love. He finds the best ways to answer my prayers, and in fact...he often uses each one of you as his vehicle.

Ryan's friend stole Ryan away for lunch and a movie today. And today, as I prayed for my peace to return...and maybe a little chocolate to pop up prayers were answered in one of the most unlikely of places.

The mailbox.

A generous check from a stranger. He read our story from another blogger.

A sweet card with the kindest note I have ever read.

A package full of Love from a friend.

Another envelope full of bracelets for the family:

and packaged lovingly at the bottom of the envelope...


I felt like He took my hand today, and wiped my tears away through friends.

I'm almost embarrassed to say this is just the tip of the iceberg. We have been the recipients of SO much kindness. How can we despair? Goodness seems to cancel out all the bad.  Love is prevailing.

A friend gave Ryan the book, "It's Not About the Bike." By, Lance Armstrong. Ryan read me this quote last night from its pages...

"When I was sick, I saw more beauty and triumph and truth in a single day than I ever did in a bike race."

Ryan and I would like to echo his sentiments.

Your good thoughts, prayers and love are our answered prayers.

We are blessed for sure.

Thursday, March 8, 2012

Not trying is not allowed.

I haven't been getting a lot of sleep, and understandably I've been under a little bit of stress. I want to keep everything as close to normal around here for as long as possible, but we all know, things aren't I've allowed myself a couple small shortcuts. 

I was so exhausted at night I came up with the brilliant idea of letting the kids go to bed a little higher than I usually do...just to curb the 2am lows. I thought, "Who would fault me? Just a smidge higher. No biggie."

But diabetes doesn't allow shortcuts. Diabetes does not allow you NOT to try your best. Low 200's mean me doing a ton more laundry, and boys waking up not feeling so great in the morning.

So then I think..."A couple more hot lunches aren't going to hurt. Who would fault me for not making homemade lunches every day of the week?"

Here is the issue with that one...they actually have to LIKE the hot lunch. And when you pre-bolus, and one of them doesn't eat said lunch? Well that leads to a 31 at 1:00 in the afternoon.

As I ran through the halls of my boy's school the other day gripping two juice boxes in my hands, I pondered the ridiculousness of the situation. Such a little thing, allowing hot lunch...and here I was worried my son will pass out or have a seizure because of it.

No shortcuts allowed. Ever. No NOT trying. Ever.

When it comes to diabetes, shortcuts mean more work and sometimes even danger. It's a hard lesson to learn that we have to always TRY, or there are consequences.

Another thing not allowed within the parameters of Our Diabetic Life: Muting the phone when you are in the doctor's office.

Inevitably someone will be low and you will have 4 missed phone calls, and to sweeten the pot you'll get two missed texts from your son who needs you to bring his Jazz band uniform to school STAT.

Another thing not allowed? Putting off needed set changes until the morning.

This morning two of the boys pumps alarmed at the same time on the way to school. It is iffy whether all three boys will make through the school day without running out of insulin. With my expert guesstimations, two will run out about an hour before school gets out.

Do I go to the schools at lunch and refill, or play the hand and see what happens? There is usually a little bit of insulin still delivered after the pump shows zero units, right?

Yeah, I have a problem.

Somebody stop me.

Sad thing is, I've already learned all these lessons before. Apparently, I'm a glutton for punishment and think It would be fun to relearn them all over again.

You can't gamble with diabetes. You have to always try. Otherwise everything can crumble quickly.  I can't do it all, but I can try my best not to take too many shortcuts/risks.

Yoda has a famous saying:

Respectfully, can suck it.  (Not very ladylike, sorry for that.)

In Our Diabetic is all about the try.

NOT trying is not allowed.

Try, or try not. That is all we can do.

Sunday, March 4, 2012

Choosing Hope

We are very aware that we should be angry, confused and screaming at the fates.
We know we should be withering in a corner shaking with fear and confusion.

But that isn't how it is around the Schuhmacher house these days. There is something bigger at work in our hearts. That something is faith.

We are cognizant of the fact that faith can seem like a fantastic thing. The Lord knowing of our family personally and in turn blessing us with those things we stand in need of can seem practically impossible.

But although it may seem so, at this moment in time we are sure as the day is long that we are being carried by His love.

Ryan and I sat in bed last night and tried to explain to each other the way we were feeling. It is so difficult to describe. Both of us feel like our hearts have stopped beating, but not in a scary...we are going to faint any minute kinda is more of a peaceful calm that has canceled out the buzz of our diagnosis shock. It is pretty unexplainable. How can we feel such peace in such a scary time? It is very surreal.

It is obvious to us that there is a divine hand in all of this.

If you would have asked me a couple weeks ago, I would have told you that the world was full of mostly selfish people who are really bad drivers. Sure, there were pockets of good people all around, but in my limited focus, that wasn't the norm. I lived in a bubble, completely absorbed in Our Diabetic Life. I couldn't look past the annoyances of the world and see people's hearts for what they were.

Well...the bubble has burst. And I see with perfect clarity the overlying goodness of the people in the world. I'm angry at myself for having to go through a crisis such as this to see. People mask their goodness by their hurt sometimes, and it is painfully obvious to me now, that almost everyone is hurting from something. Good lives. And in our case, it has prevailed.

It is almost unfathomable the outpouring of support and love we have received throughout the diabetic community and beyond. Our church family, our blood family, our earth family...they have all reached out to us, and we feel more than anything, abundantly blessed.

We are crying ALL the time. But it isn't due to is because we are constantly touched by the thoughts and prayers of all of you. Every note, every song, every picture, every blog, every status, every tweet, every call, every meal, every hug, every well wish is burned into our hearts. We are trying hard to accept all the love. It seems silly how easy it is to give love, and so hard it is receive it.

Ryan and I have changed. In one week we are different people. Seems impossible, but I promise it is true. We see the world and every person within in a different light. We feel our Father in Heaven wrapping his arms around us, and we truly believe that our miracle is in the works.

Your prayers and good works are making a difference. We feel them...they are as tangible as the keyboard my fingers type on this moment.

Ryan was never a facebook, twitter or blogging kinda guy. Now, when he wakes up at night and can't sleep he turns on my computer and reads the love. He wants to send a personal message to all of you. That will come soon.

Until then I want to leave you with this quote I found:

"The scriptures say that there must be an opposition in all things. The adversary uses despair to bind hearts and minds in suffocating darkness. Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.

Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father. There may be times when we must make a courageous decision to hope even when everything around us contradicts this hope. As one writer expressed, “in the depth of winter, we find within us an invincible summer.”"

Our family has officially made the decision to Hope. It didn't come at one moment, but rather through small doses of encouragement and prayer throughout this week. Your prayers have brought us the peace we needed to get to this place. Saying thank you is totally insufficient. You have saved us from despair.

How will we ever repay you for that?

God bless each one of you for your goodness.