Friday, April 29, 2011

The Whiteboard Solution.

Last week's DSMA chat was on looking at blood sugar trends. Or rather, DO you look at blood sugar trends? Or rather, what do you do to see blood sugar trends...

I'm confusing myself already.

Point is, I've been having a tough time for awhile spotting current trends in the boys' blood sugars. Back in the day, my memory was money...not so much anymore. It seems the older I get, the harder it is for me to retain information.

AND, there are three of them. It gets confusing, ok!?!

Spotting trends has especially been an issue since Ryan has taken over most of the nighttime checks. I am a firm believer that nighttime is THE most important time to get things right. Only because it is the easiest time to get things in order. Once nighttime numbers are on track, you have won half the battle. So, since we split up the blood testing duties, when the boys wake up out of range I'm hard-pressed to know if it is human/husband error, or if basals need to be tweaked.

Communication has been pretty much sucking eggs. When I call my hubby at work in the mornings and ask what was up with sugars...he generally doesn't remember. It is usually something like, "Two were good, one needed a correction." I'm not pointing fingers or anything...my swelly brain can't remember things anymore either...remember?

So let me get to the heart of this post right this minute...I hate trying to keep track of numbers. I start with good intentions, writing everything down and it never lasts long. It is my swelly brain rebelling to be sure. For YEARS AND YEARS AND YEARS I wrote down every blessed blood sugar number there was, along with every carb that passed through the boys' lips. Once the doc said we didn't have to anymore...that was it. I didn't do it anymore. Ever.

Sure, I would copy numbers off blood sugar monitors...but when the third was diagnosed that all got thrown out the window. All my boys use the same meter...the one that is closest to them at the time. We have a good 10 of them floating around the house and around town. So now we count on the information download from the boys pumps to spot the trends. Trouble is, I don't download them...only the endo does.

Yes, I CAN download them. I just don't like it. Those graphs make me throw up. They make me cry. It is too much information!!! I can't do it...I just can't!! (And...end of dramatic scene...)

So a few weeks ago I finally came up with the solution.

Well, maybe not THE solution, but A solution.

The whiteboard!

Ta da!



We aren't brilliantly consistent with it or anything...but it has helped a ton! The boys even have been writing in their numbers at night and in the morning.

Not the solution to everything. I totally get that I didn't invent the wheel here...

But it's a solution none the less.

And the best part is...I can wipe those numbers away in one swoop. They are not permanent. Very cathartic to erase them away and start fresh!

I'm pretty sure many, if not most of the amazing people who are reading this...(you?)...keep very detailed, computer spreadsheet layouts of every number/bolus/correction/carb...and that makes my little whiteboard look like tinker toys to your Metropolis. But we all do what we can.

I'm doing the best I can.

Even if the best I can comes in the form of blue, black, green and red whiteboard markers...

Thursday, April 28, 2011

Teeter. Totter. Breathe.


I'm on a teeter totter.

I'm up in the air...I can feel the wind in my hair...the view is just fine.

Diabetes isn't that big of a deal.

I'm on a teeter totter.

I've hit the bottom...I feel the hardness of the reality...My head aches from banging the ground.

Diabetes is SUCH a big deal.

I'm on a teeter totter. I'm sitting in the middle. I'm neither up nor down.

I'm ok.

That is my life.

Riding the teeter totter day after day.

I can't make it stop.

I'm up.

I'm down.

I'm ok.

Tis Our Diabetic Life.

Some days I feel like I'm stuck on the ground. My pockets are filled with weights. I can't move. My tears water the dandelions. On these days, all there is...is diabetes. It's a big deal. It is such a big deal.

Other days I'm flying high. Diabetes has nothing on me. My laughter echoes through the clouds. I'm light as a feather and I can stay up all day long. Numbers are good...there are no worries...deep breath...

It never lasts long.

Because what goes up...

Must come down.

But the middle. The middle is where I spend most my time. I'm centered there. There is no up and down....there is just calm. There is no comfy seat in the middle. I have to brace myself with both hands to stay there. But the middle is a safer place. The middle is where I need to be.

I'm okay when I'm in the middle.

I'm on a teeter totter.

Every day.

Every hour.

Where will I wake up tomorrow? Will I be up? Will I be down? Will I be bracing myself in the middle?

Only tomorrow knows.

Too bad, the teeter totter isn't as fun as it looks.

I'd rather have both feet on the ground. I see people walk by me every day with their feet on the ground. I wonder if they know how lucky they are not to ride every day? I wonder if they have any idea how much I want to walk with my feet on the ground too?

I wonder if they even know I'm on the teeter totter?

Can they see me going up and down, up and down, up and down?

Do I make it look fun?

I'm on a teeter totter.

And honestly...my butt hurts.

Sunday, April 24, 2011

The one where I get a little religious.

This morning at church I was checking L's blood sugar while the congregation sang the opening hymn. The lancet must have been set at deeper setting than usual, as his finger bled profusely after the shunk. Unprepared, I wiped the blood with my hand...cleaning it from his fingers to mine. I looked at my blood stained hands as the chorus of the Easter song rang in my ears, "He is Risen!"

Wiping the blood from my fingers, our mortality sat in grime reality in front of me.

We are mortal.

We are human.

We are imperfect.

Living a diabetic life is a never ending parallel to living our mortal one. Constant corrections.

As I need to make constant corrections to the boys blood sugars, I need to make constant corrections to the way I live my life.

Because I'm not perfect.

I don't know why I picture millions in the world that are perfect. Upon further thought...I'm hard pressed to think of even one.

No one is perfect. Everyone has their own story...their own demons to face.

My mind draws back to my life when I was a new mother. I'm pretty sure the first 10 years of motherhood was me trying to convince others I was perfect. The "perception" that people had of me was paramount to anything else. Years have passed and it seems I'm burning the candle at the other end. I couldn't be perfect, so I've given up.

"Why even try?" I would often say to myself. "I don't have the time or the energy to do the job to my perfectional standard, so I'll sit this one out."

I'm tired of my apathy. I'm tired of shrugging everything off. I have a lot of fight left in me. I have a lot to offer. I stand ready to make a difference...or rather, I'm at the threshold of being ready.

Blood is a powerful image. As I stared at the bright red smears on my hand this morning, I thought of the ultimate sacrifice Jesus Christ made for me. What I do to in regards to the boys diabetes is but a small sacrifice compared to His. I can't use our situation as an excuse to not get involved anymore. I'm so tired of being tired. Life was meant to be LIVED. Imperfectly...constantly correcting our course. I'm not a bad person because I'm not a perfect pancreas. My best is just going to have to be good enough.

I'm mortal. The blood that runs through my veins tells me that.

It is time for me to accept myself for who I am. It is time to open my eyes to my imperfections and embrace them.

I owe it to the Redeemer to appreciate this body, and this mind that I was given. It is time for me to me to get over myself.

He is risen. And so has my confidence.

Tuesday, April 19, 2011

Help Wanted: full time shoulder sitter

"I'm spinning plates and doing nothing well."

I keep saying that over and over in my head and I have to wonder if it is really true, or if it is my self-deprecating "I'll-Never-Be-Good-Enough" inner judger doing all the talking.

You know?

It's like I have the devil on both shoulders.

"Meri, just give up...you are going to make a mess of it."

"Meri, you are a joke, stop before you make it worse."

"Meri, why even try? You don't have time to do it right!"

"Meri, you could do SO much better...you are letting people down!"

"BTW Meri, you are fat."

Yeah...devils are no fun at all.

So what does one do when the Devils spend the entire day picking on...one? Well, me.

What do I do?

What to do...what to do...

I don't have an answer for that one.

I always say, "You can't do better than your best."

I believe that. But what if you have no energy for your best? What if...all your get up and go, got up and left?

I need to refuel! I need a vacation! Hey, that Hawaii comment in my last post wasn't just me blowing hot air...my brain needs a serious break.

Lately, I forget everything. I remember half of what needs to be done, and forget the rest. I'm having to do double the duty because half of me forgets what the other half expects of it. Not okay when you are the mother to three boys who have Type 1. Not. Okay.

Am I losing you?

Am I losing my mind?

Is the blog-post-emotional-roller-coaster I've been taking you on the past few months making you rethink your trip to Disney?

Just a couple questions I am going to leave you with as I end this completely random, and completely unhelpful-to-anyone-in-the-world-post.

I'll be back soon, hopefully with a better outlook on things. I've put out a classified ad for an angel to sit on my shoulder full time. I need one of these little devils edged out asap.

Speaking of help wanted...I still haven't filled THIS position yet. Please let me know if you have any leads!

Friday, April 15, 2011

CSI: Diabetes

If my house were presented before a judge and jury, we would be convicted of afternoon lows in a heartbeat.

I've been cleaning up the crime scene all morning.

Four juice boxes thrown on the blood sugar station, completely depleted of its juice. Crushed from the force of suction from a young boy's satiating eagerness.

Test strips littering the floor from harried blood sugar testing.

Tubes of yogurt and banana peels lay on the kitchen table like corpses...ready for their chalk outline.

Inside the refrigerator, pieces of hot dog torn off...incriminating evidence that Lawton received a treat for alerting on a low.

Four blood sugar monitors taking cover in different geography of the house...each with a history more incriminating than the next.

And the creme de la creme of evidence...the DNA within blood smears on the low food cupboard from hands that moments before had been poked by a lancet.

It's all there...and before the jury goes out I am confessing.

We are guilty.

My hands are in front of me, ready to be taken away...

To Hawaii maybe?

Wednesday, April 13, 2011

DO, and his ugly step brothers WHY and HOW.

My heart is heavy.

Several of my closest friends in the online community are facing new trials.

It makes me ask the question that has eaten me alive in the past..."WHY?"

"WHY must families that already face hardships far beyond anything they ever imagined, WHY must they face more?"

Unfortunately, back in the day, WHY and me used to be tight.

And now here he is again, trying to worm his way back into the recesses of my swelly brain...persistently trying to buy tickets onto my train of thought.

But I ain't selling him any.

Because WHY gets us nowhere. We sell him tickets to our thought trains and SCREEEECH, everything comes to an abrupt halt. No progress can be made with WHY on board. How do I know? Because of my BFF relationship with WHY...I know firsthand what a poop disturber he is.

There is no answer to WHY.

WHY is only there to make us miserable.

There is no strength in WHY.

WHY is there to take our minds away from the things that are really important, like our blessings. He wants to preoccupy us with his time so there is no room for anything else. WHY is extremely needy.

Then there is WHY's brother HOW. We wonder HOW the heck we can survive the heartache. We convince ourselves it is impossible. HOW isn't even an option. There is no answer to HOW. We can only take things one day at a time and in doing so, HOW will not become an answered question, but rather a way of life.

HOW?

I don't know how. We just DO.

DO.

If we move forward and DO...things eventually get better. (or worse, and then better.) Time heals. I am a living, breathing example of that.

Yes, DOing means we will fail. Not every blood sugar will be in range. Not every carb count will be right on. But we are warriors...we fight and we do not give up. Often as parents of children with diabetes we start out losing the battle...but we eventually win it. We eventually win every single one. Sure the battle can go on for days...but that doesn't mean we are losers. In the end we find a solution, and we win.

"Winning!" (Had to throw in some Charlie Sheen.)

I found this quote and it made me cry. I am a crier. I own it.

So I thought I would share. I had to read it slowly a couple times to really get the message loud and clear.

"It is not the critic who counts, nor the man who points out how the strong man stumbled, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs and comes short again and again; who knows great enthusiasms, great devotions; who spends himself in a worthy cause; who, at the best, knows in the end the triumph of high achievement, and who, at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those timid souls who know neither victory nor defeat."

- Theodore Roosevelt

Amen Mr. Roosevelt. Amen.

Sunday, April 10, 2011

Sympathizing with Fred Sanford.

The other day after school I had the boys test their sugars and report back...well more like yell back, what their numbers were.

L- Wouldn't tell me. He just did his march to the low cupboard all the while maintaining intense eye contact with me...it's a wonder he doesn't run into a wall. So I knew he was low.

B- Came in and sat by me on the couch. "I'm 42."

Me: "YOU'RE 42!!!!" Grabbing my heart...

B- "No, ONE 42. 1-4-2"

Me: "Geez B, no mumbling when you tell me your number. I'm having heart palpitations."

J walks in with his 13 year old smirk. "I'm 489."

Before I can ask what the what, he giggles like a 2 year old.

J: "I'm just messin with you! I'm 129."

Is it a wonder I'm not in a mental institution?

I'd like to say this was an isolated incident, but the fun presses on!

B has mumbled half numbers to me THREE times since then, and L has continues to remain silent, reveling in his independence.

J...J isn't any better. He continues to joke/tease/LIE just to get some sort of reaction out of me.

"Why J? Why? Do you have no idea the pain you are causing me? My brain is swelly enough as it is!"

"If I told you the real number right away, you would be all, 'Whatever, ok.' But when I tell you an off number, and then SURPRISE you with a good one...then you are so relieved you practically want to have a party."

Teenagers. He's thirteen and he already has the screwed up logic of a sixteen year old. As sick as his logic is though, it's probably true. Regardless, I feel like Fred Sanford lately, constantly clutching my heart...."This is the big one! Elizabeth! Elizabeth! I'm coming home to you!"



Wednesday, April 6, 2011

Getting to know the man in the rainbow tie.

He was the gentle looking man in the corner with a rainbow tie. When I walked into the room after lunch and saw him there, I thought it would be nice to introduce myself.

I walked over to him and said, "Hello, I'm Meri Schuhmacher."

"Hello," he said, "My name is Richard Rubin."

"Nice to meet you."

And I walked on. As I settled into my seat, introductions for the next half of our session began. Dr. Francine Kaufman introduced him. She kissed him enthusiastically on the cheek and said, "Everyone in this profession has learned at his feet. If you don't know him...you probably shouldn't be here."

I sunk in my seat. I had no idea who he was. Filled with shame I grabbed my pen and poised it for action. If I didn't know him now, I dang well would by the end of his session!

His name was DR. Richard Rubin, Associate Professor at Johns Hopkins University.

For the record: I now know who he is, and I love him. Seriously, I wanted to wrap him up in a gum wrapper and put him in my purse.

He started his speech with pictures of his family, and his connections to type 1 Diabetes. First his sister, then his son. I bawled like a baby. We all know that is how I roll. Here is a tip for the next forum Medtronic...Kleenex on the tables! I was 5 minutes into the water works before I realized I had a napkin under my can of Diet Pepsi. This man was one of the firsts to recognize the emotional element to diabetes. He wanted doctors to be cognoscente of the impending burn out that ALL people with diabetes face.

Most of his speech is a blur to me. I was transfixed on his words...wide eyed. He so eloquently explained how much he "gets it." The entire room nodded in unison as he spoke of Diabetes Burnout and his advice how to curb it.

What he wanted to convey, and what I always have believed..is it's all about perspective. And laughing.

Perspective and laughing.

90% of those who read this blog are parents of children who have Type 1 Diabetes. I'm going to go out on a limb here and guess that our biggest ailment is GUILT.

Every time a number is high. We feel guilty we didn't bolus enough, or SWAG properly, or take in consideration the emotional aspects of our child's day.

Every time a low number flashes before us, we are ridden with guilt that we should have bolused less, or we should have stepped back to look at the bigger picture of the day...or seen the pattern of lows from days before.

Every time anything happens, be it an occlusion in the pump, or a Chinese food buffet gone wrong, we blame ourselves.

Dr. Ruben encourages us not to look at things as "mistakes," But rather to think of our efforts as an "experiment" to get information.

He says DON'T look back...look forward and ask yourself, "What can I do next time."

Letting go of the guilt is a big one. It goes against the metaphorical grain of a parent. We want to bang our head against a tree again and again and lament on how badly we messed up. It took me 12 years to be able to look at a 400 on the screen and not feel like 100% loser. Do you feel like that 400 is your fault, or diabetes fault? I reckon many of you feel as though it is your fault. That you failed your child. I still have my moments, but I am able to let it go more easily these days.

Let's face it, guilt is like throwing kerosene on a forest fire. It isn't going to do anyone any good.

To help with the feeling of failure, there was a great story brought up about Thomas Edison. A man came into Edison's lab and saw all his failed experiments. "Why do you continue to try to invent the light bulb after failing 5000 times?"

"I don't think of it as 5000 failures," says Edison. "I think if it as 5000 steps closer to a solution."

Booya! Love that!

Dr. Rueben also gave some tips for avoiding diabetes distress.

* Keep your eyes on the prize.

*Motivation has to be personal...it has to come from you. (For us parents, I think that motivation may be a bit easier than those who live with it. Our motivation is a healthy future for our child/children. They are our constant reminder. Their sweet faces is why we keep going.) Whatever our motivation, it needs to be personal, present and positive.

The biggest thing I took in was the importance of looking at your successes. Dr. Ruben says there is a TREMENDOUS benefit to looking at success rather than failure.

As parents it seems some days/weeks/months...all we do is fail. As a parent of three type 1's, it seems sometimes I am set up to fail. I mean really, what are the chances that all three of my boys are right on target? We are REALLY hard on ourselves. But we can move forward by recognizing that we ARE doing things right. Looking at success can lift our spirits. We can all be better parent-pancreases if we look at things positively, rather than negatively.

If we do something right, ask why it went right, and what we did to get it right.

Sure, sometimes it is dumb luck, but that dumb luck is a victory none the less!

Lastly we learned that we all need to find a way to get the support we need, and we all need to find a way to relax. Yes, parents with children with diabetes need support too! We can't do it alone! Find a friend who gets it! (Hey, I'm one right here!) Find a way to relax! (Hey, blogging is great way to get it all out!) And most importantly, find a way to laugh.

Laughter really is the best medicine.

Dr. Ruben asked me how I relax...and since I was put on the spot, I said going out with my husband. But afterward I wanted to kick myself. Honestly, as much as going out with my husband is DA BOMB, the best way for me to relax is to blog. I don't plan out my posts. I sit in front of the computer and just start typing what is in my heart. I wasn't planning on blogging about Dr. Ruben today...but I saw my notes on my dresser and laughed when I saw a note to myself, "Meri, get over it! You are doing a good job!" Maybe I need to make that into a plaque. :)

I hope I didn't bore you with all my notes, but I wanted you to get a feel for the experience I had. Dr. Ruben had an intense desire for us to go back and tell all of you these things. He wishes as much as I do that all of you were there with me. Dr. Rueben is good people. For sure.

Dr. Richard Ruben has co written a bunch of books. Google him and check them out for yourself! I won "Sweet Kids" in a drawing at the end of the forum. I can't wait to dive into it.

Next time I meet Dr. Ruben I won't walk on. I will thank him profusely for his tireless work to get endos to understand the importance of emotional help for those with diabetes. His efforts have made a difference to so many in this world...now, that includes me.

Monday, April 4, 2011

Meri Tyler Moore or Sponge Mom Sappy Pants.

I was bone dry.

I entered the airport terminal like a weathered sponge who had sat in the sun for days. My body ached for relief.

I didn't know what to expect from the Medtronic Advocate Forum I was to attend. It was a complete unknown, and although I was scared to death of traveling alone for the first time...to see people I had only seen within the 17 inch parameters of my computer screen, I couldn't help but smirk to myself as I walked through the jetway to the airplane...

I was ready.

As dry as I was, I was ready to soak up all the hope for the future I could. There was a heaviness to the moment...I knew this trip would mean something.

But when I got off the plane in L.A. the heaviness abated...there was a lightness to my step. The adrenaline had taken over as I was alive with anticipation. If I had a hat, I'm sure I would have thrown it. It was a Meri Tyler Moore moment for sure.

The second I entered the hotel lobby and saw the group of bloggers/writers/advocates chatting in the group I felt plumper already. Just to see their smiling, enthusiastic faces made my trip worthwhile. I spent the evening soaking up every word I could. They couldn't talk about anything without it being fascinating to me. They were my age...some maybe a bit younger, some maybe a bit older, but regardless I felt only motherly towards each and every one. It was like looking into the eyes of my boys' future...and I wanted to know it all.

People with diabetes are remarkable. Adults and children alike. There is no getting around it.

Entering Medtronic was humbling. They had a museum of insulin pump/diabetes history that brought tears to my eyes instantly. I was emotional the entire day. Wrapping my brain around the information being presented brought a plethora of emotions to the surface, with the most immense emotion being gratitude.

Geniuses were paraded in front of us. Each one with a personal connection to Type 1 Diabetes. Each one with a drive and thought process far beyond anything I've ever imagined. I wish everyone of you could have witnessed the emotion, the genuine enthusiasm these people have. The human element of Medtronic was the clincher.

We asked how. They would tell us.

We asked why. They would tell us.

We asked what and when. They couldn't tell us...well not exactly.

They couldn't tell us about any products that have not yet been green lighted by the FDA. We vented our frustrations and they echoed back each frustration. All they could tell us is we are going to be happy with what is coming.

They are frustrated. It is like they are being water boarded by the FDA...they are being asked to jump ridiculous hurdles to get us the technology that we are longing for. They have it ready. They want to bring it to us. They are bringing us what they can, as soon as they can. There are tradeoffs for this...but every decision they make is with us in mind. The technological future for our children, and for our friends with diabetes is in good hands.

Lane Desborough is Medtronic's Project Strategist. I think they invented this position just for him. He is that genius. His son was diagnosed recently and through a series of events he ended up working for Medtronic. He is thinking outside the box and is crossing industry lines to find new innovative ways to further pump technology. He knows we have too much stuff to carry around and dreams about getting it all down to one device. He too is frustrated that he can get any number in the world with his cell phone, except the most important...his son's blood sugar number. He is working on it.

Seriously, I am going to sleep better at night knowing this guy is on our side. Medtronic also has brought in the mother of the Droid. She is working for the company now. Can you tell I'm impressed?

I'm just a mom. I'm not a reporter or someone with thousands of followers. Sure, there is a chance I'm more easily impressed than others in this world...but I'm not completely gullible. I think everyone in attendance was pleasantly surprised with this forum. They even brought in Dr. Richard Rubin from Johns Hopkins to talk about the "person." Medtronic knows diabetes isn't just about machines...there is a person behind the pump making hundreds of decisions a day...and that person risks facing burn out from this demanding disease. Dr. Rubin is getting his own post...I don't want to overwhelm you with everything I learned. I so wish each and every one of you were in that room with me.

I was dripping with hope when I left. I squeezed every drop of juice out of this experience. If I was a dry sponge before I attended...I left a rotund squishy mess. Hell, just call me Sham-Wow.

I'm owning my sappiness people. Maybe it was being surrounded by such amazing/fun/intelligent PWD's. Maybe it was hearing the Vice President of CGM business say, "We hear you." Maybe it was watching a room full of people meticulously assemble each CGM sensor by hand. Maybe it was splitting up in small groups and having face time with people in the company that can make things happen. Maybe it was knowing that the people with Medtronic that DON'T have diabetes, sign up regularly to wear the product...use the product. They want to know what it is like. More than anything is seems Medtronic empathizes with our plight. And that gives me hope beyond measure.

Maybe my attendance to this forum didn't change the world.

But it changed me.



Thank you Medtronic for the invitation. Why you picked me exactly, I do not know. But this experience has changed my path. No, not completely...but the compass is shifting. I want to know more. I'm hungry for information...if I can make the smallest of a difference, I stand ready to do it.

Please visit Amy at Diabetes Mine to learn more of the specific details...she also has posted the "silly" pic of all of us at the forum.