D Blog Week, Day 1: Dear Doctor

Huzza!  It is D Blog Week!  I, along with a ton of other Diabetes Bloggers will blog every day on a set grouping of topics that you can find HERE.  Todays topic is:

"Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?"

I have a wonderful Endo, and a wonderful CDE.  They are kind to me, and honestly want to help a girl out whenever they can.  They also read this blog.

Shout out to my healthcare team!  W’sup?!

The boys’ Endo and I have a great mutual respect for one another.  I respect her opinion of the course of action we should take after the data is collected, and she respects when I’m not ready to make a change, or feel like a bigger change is needed.  It’s a wonderful, safe place for a worried D Mama. 

I do suffer from a bit of anxiety when appointment time comes due.  Three A1C’s is a big bag of bricks to carry on one mama’s shoulders.  Even though she never gives me a hard time…I’m hard on myself.  I know when I can do better, and I know when I’ve done so well there is just no way I can keep up the momentum. 

But what, if anything, do I want her to know?  I’m pretty open about things, and since she reads my blog…she usually knows when I’m in a good place, and when I am not.

I can’t say she doesn’t know this, but what I HOPE she knows is…

Dr. G, what I hope you know is…

* Every number has a story.

* And decisions that I make every day aren’t always black or white.  The other day one boy woke up at 489, and corrected himself before he told me the number.  When I pulled the set, there was blood in it.  But now he delivered a load of insulin.  Did he get any of it?  He’s just about to leave for school.  What would you do?  Would you have me stay home from work, and re-bolus the entire bolus?  Would you re-bolus and have me send him to school?  Would you have me give a couple extra units and hope it all works out?  I’m faced with these kinds of decisions almost every day.  It isn’t always check, count, bolus.  In fact it is rarely that simple.

* Humalog and Novolog aren’t exactly the same.  We made the switch as our insurance commanded, and now their numbers are running higher.  No, it isn’t my imagination.  Yes, it is frustrating.

* I have found more crazy issues in the middle of the night than I can wrap my brain around.  Ripped out sets.  Blood in sets.  Kinked sets.  An unexpected low.  An unexpected high.  When you tell parents they don’t have to do a late night check…I just want you to remember that.  Especially when you are me…I rarely, if ever, have a night when I don’t have to make a correction or feed a child.  Maybe my boys A1C’s are good because of the work I put in at night?  One day they will be on their own, and I will have years of a solid 7 hours sleep ahead.  (That’s my plan…and I’m pretending it’s going down that way.)  I’m not saying everyone needs to do a late night check, I’m just saying, let parents follow their gut.  They are surprisingly accurate.  (Also, since my alarm fatigue is so severe…I’ve been sleeping through my 2am alarm for months.  Their numbers in the morning aren’t always were they should be, and that dominos to the rest of the day.  I cannot discount the difference late night checks make.)

* The last thing I want you to know is how grateful I am for you.  I can’t remember the last time I said thank you.  For listening to me.  For caring about us.  For respecting my gut. 

What don’t I want you to know?  Something you already know.  I hate changing sets every three days, so sometimes...I go four.  I can’t properly explain WHY…but changing every three days makes me crazy.  There is a threshold there that when crossed brings me to the island of, “This is too much.”  I don’t know why three days seems SO much more overwhelming than four…but it’s a fact that for my swelly brain:  It is.  I make myself change at the three day mark, a lot.  But not all the time.  I’m not proud.  You already know.  But I’m baring my soul, so there it is in black and white.

Other than that secret shame, I want you to know that I know…we are a good team.  A good village.

Thank you for almost 15 years of unmatched care and love.  Here’s to many more healthy and successful years ahead! 

See you soon!

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The Seasons of Diabetes

I wrote this post last fall -- and left it to 'simmer' under my drafts, until I felt I could more fully, and more maturely, develop it. 

It's cool outside. The air is crisp, and clean; tinged with so much moisture that I can feel its mist on my cheeks. Wondering home after work, in the early afternoon, gives me pause. The crunching leaves underneath my feet, the neon yellow colors, and the scent of trampled ginkgo biloba wakes me right up. Ginkgo biloba is pungent, that's for sure; it's scent is something between icky bodily functions, and rotting flesh.

No matter though. The heavy atmosphere begins to release a mild rain... and though there's no umbrella and it's quite cool outside, I find myself embracing the very awareness of being alive that the new season brings upon my senses.

I realize, suddenly, that I love Fall. But then, don't I also hate it sometimes? I know I've told myself that before... Why is that?

[Walking gives one much time for thought. Deep thoughts by Jack Handy kind of thoughts, I guess. (If you hate walking for the exercise, well, at least love it for the thinking.)]

So... what is it that I love about Fall, or any season, anyway? The answer is both obvious, and not so obvious; one of those much clichéd "Aha!" Oprah kind of moments. I love seasons because of their promise of RELIEF.

This brief moment of relief brings my soul much healing from the previous season; a much needed break from the burden of dealing with whatever else was before. Yes, relief. You see, I start out loving a season, and then it slowly becomes annoying to me, and outright burdensome... I then get sick of it, or even depressed from it. I get sick and tired of the stupid season! It seems long, and never ending... and there's only so much of -20°F or 100°F (and everything in between) one can tolerate. So, every new season brings me relief from the previous season. It brings me a much welcome change of pace. It brings me an opportunity to love life again. To smile... to take in the wonder of how much nature can change from one moment, to the next.

And it's much the same with diabetes, and our "seasons" of self care, isn't it? We make up our minds to begin caring for ourselves, anew, and start out with the joyful promise of good things to come... and then we get sick of it. We seem to perpetually live in one season, and one season only -- often with little flexibility with our routines; we impose the new "season" on ourselves --with strong militance -- and then we burn out. Then after a little while, we start yet another season, but with the mindset of 'rectifying the previous bad behaviors.'

But, should we change things before our "season" changes us into something we don't want? Maybe we ought to begin a new season simply pondering what lead to the 'bad behaviors' in the first place... I know I'm guilty of it, particularly with my routines. With it's dietary calculations, carbohydrate juggling, testing, supplements, medication management, exercise routines, and doctors appointments -- diabetes can be one long, and boring, and often, depressing season. Some people thrive in that kind of season, just like some love perpetual sunny days... but once in a while, my soul needs a little rain.

So, how do we avoid this cycle? What can we do so that we don't get stuck being miserable, in a crappy season, and completely giving up on diabetes management, over and over again? Well, it's obvious that we're creatures of spontaneity -- we need, and crave change, so wherever we can, we must allow ourselves some flexibility. With this in mind, we must take a moment to consider...

a.) Which things are negotiable; and
b.) Which things are not negotiable.

And we must be realistic. We need to sit down with ourselves, and realize that we simply cannot put everything in the "not negotiable" camp. For example -- as much as I, in principle, would love to eat nothing but eggs, every morning, so that I have the best blood glucose numbers -- I know that I am quite sick of eggs. I don't want eggs all the time; I don't want flax seed meal muffins, I don't want weird food. I want to eat a chicken soft taco, with lots pico de gallo, lettuce, and a little hot sauce. It's about 35-40 carbs. IT'S FINE. My morning blood sugars aren't below 100, but quite frankly, they don't go over 150, either... and I'm okay with that.

Will I have a bunch of cereal, of any kind, for breakfast? No. Cereal is not negotiable for me, and not even because of the spike. It's just not satisfying to me -- psychologically, it doesn't seem like I've eaten anything, and physically, it just doesn't fill me up. It makes me need more food, and I'm not much of a pleasant morning person to be going around, making extra things. I tend to like regular meals at that hour, OR, a light snack and a brunch later on. If we think about it, most breakfast foods are just an excuse to eat desserts in the morning, anyway. So... I'm not going to kill myself with eggs, nor cereals, nor weird substitutes.

Now, in my desire to eat with awareness, what I seek to avoid is binging; that is not negotiable. (As non-negotiable as completely giving up testing.) Overeating may happen from time to time, as we learn our limits -- but binging is not negotiable. So, what does my body want to eat, intuitively, the most? These days, my body wants and craves veggies the most. Non-starchy veggies, and lean proteins. Sometimes, though, I might crave a bit of creamy tomato soup, with a small portion of gnocchi in that soup -- and I can have that. I need to recognize, though, that I will NOT and CANNOT live forever on just veggies, and just protein. That the occasional starch and/or grain is okay -- even if it's not 'whole.' I am perfectly aware that this is not deadly, that it is not untenable, and that some people make the change, without issue -- but if I did this, I know I would soon fail.  I am not a person, psychologically, to endure such a restriction -- to endure deprivation and strict eating rules. I do eat low carb most every day -- but every once in a while, I am OKAY with my blood sugar not being perfectly below 120 after every meal. If it's below 160, sometimes, it'll do. Yes -- it'll do. So... I tend to cycle some days when I eat very low carb, with some when I eat moderately low carb, and with some when I allow myself a treat. Studies have shown that an intermittent low carb diet is still much better at reducing insulin levels in one's blood, than a Mediterranean diet (or standard dieting). We're not speaking of insane changes, here... It's not like I'm going to sit out in the rain all day, because I got tired of sunny days. (No, no... sorry, there's not going to be an "all brownie day." Put down the icing.) But maybe one or two days of splashing in some puddles might do me some good. After all, who wants to go to a favorite restaurant and ALWAYS have to stick to the same food option?

No one. They'd soon fail. So then, we must learn to be realistic, and keep a balance between our own desires for freedom, spontaneity and change -- and our limitations.

Another change in season which we may consider, is simply changing how we view the way a meal affects us. Not every meal is going to be perfectly within blood glucose goals -- but perhaps the bigger question should be: "how well do I feel when I eat it?" Quite frankly, I have to limit heavy breakfasts -- proteins with too much fat, or calories, will make me feel bogged down and sick -- even if they give me great numbers. Most of the time, I cannot handle a great work day, if I'm bogged down in a very heavy breakfast. I also can't eat very bitter or tart foods at that hour, like yogurt, or grapefruit. Hey, I admire the people who eat that every day, and can get away with it -- but it seems to be unsatisfying to me, both physically, and emotionally. On the other hand, a home made tomato soup, with lots of veggies, and a bit of gnocchi -- while giving me blood glucose levels sometimes in the 160s -- make me happy, joyful, and healthy. And the highs do not last very long. Since I've started eating more like this, I've also had better fasting numbers in the mornings -- usually in the 80s.

But perhaps, by far -- one of the things we ought to consider when managing our 'seasons' with diabetes, is to enlist the help of our friends and family. If one has a "Type 3" person enlisted in one's care, one should use this moment now to plan out a 'new season' with them. That could be as simple as choosing one or two weekends a month, where they are the person who makes meals, so that you don't have to be the main meal maker ALL the time. Or, it could be the other way around... maybe we can be the main meal maker, so that we give one's Type 3 a break from having to make our meals all the time. Learning to plan, and prepare, diabetes-healthy meals can be a lot of fun, sometimes.

What concessions are we willing to give ourselves in order to learn why the caged bird sings? Diabetes is a steady stream of seasons; it's best to let ourselves change and flow with the wisdom they bring. I'm only 36, and I have a good 30+ more years with this disease, so I have to learn to run a good race... and be consistent at it. This, for someone like me, is a HUGE challenge... and though I may seem like I have it all together, believe me, I'm still, very much, a work in progress.

I never have quite the same consistent answers about my eating habits, or exercise routine... because well, there is no consistent answer. I simply try to do whatever makes me feel healthy, so long as Mr. Meter approves... and I'm not sick of it. Mr. Meter, though, is going to have to learn to be a bit more flexible, sometimes. Or he'll end up decorating my wall. As you can see by this 14 day average, he can be a real drill Sargent, sometimes... even with those silly, googly eyes.

In order to survive, we need to change our seasons. We need to redecorate, to transform, to change the same four 'diabetes walls' we stare at, every day... because we need RELIEF. 

Sometimes, our souls just need a little rain.

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We Are The D Mothers

We are called D Moms.  D Mamas.   Even Type 3's.

Sometimes we get a bad rap.

~We're too "intense."

~We worry too much.

~We are overbearing.

~We over think.

~We over react.

~We over manage.

And I only have one thing to say about all of that...

You are probably right.

I want to tell you that if you are a parent, you can understand.

But that is not true.

I want to tell you that if you have diabetes yourself, you can understand.

But that is not true either...just as I will never fully understand your diabetic life,

you will never fully understand mine.

The only way you would understand what goes on in the swelly brain of a D Mama,

is if you were a D Mama yourself.

We are special.  Chosen for our story, as you were chosen for yours.

We are fighters, and we will fight until our last breath to keep our children safe.

New technologies like fast acting insulin and insulin pumps provide keys for better management, but they also provide a clear and present danger at all times.

We have to be vigilant.

We look into the eyes of our children and we love them with a bright tenderness.  We want more than anything for them to live a life free from restrictions, free from prejudice, free from complications, free from emergency rooms and hospitals.

We feel a responsibility well beyond any bounds of normalcy.  We do not want to live a life of regrets.  One day we will need to look into the eyes of our adult Type 1 Children and we want more than anything to say...

"I did my best."

The mothers of Type 1's spend every day racked with guilt.   Every blood sugar number pierces our heart.  We feel responsible for every high and every low.

An argument can be made that diabetes is responsible for every one of those numbers, but in our eyes...whether a reasonable notion or not, we feel they are a reflection of our efforts.

We may not always admit it to you, or to ourselves...but we take those numbers personally.

The A1C isn't called the mommy report card for nothing.

We do not sleep.  That is a choice.  We choose to keep a close eye on the numbers while the world takes a break.  We don't take breaks.  We know that waking up with a off number can domino to the rest of the day. 

We know honeymooning pancreases can sputter.

We know the soccer game from 5 hours earlier can affect the nighttime numbers.

(Yet we urge them to play.)

We know that Pizza can wreak havoc hours after consumption, and we know that Chinese food for dinner means a sleepless night for us.

(Yet we delight in serving them their favorites anyway.)

We know that diabetes never sleeps.  That is why we don't either.

We know that a 200 can turn into a 52 in 30 minutes flat.

We know that on field trip days our children may spike with excitement, or bottom out from activity.

We know nothing is for sure.

So we check, and constantly ask our children how they are feeling...and we hover...watching every move...looking for changes in our children's faces...changes in their gait...tiny beads of sweat on the back of their necks...we know the signs of lows.  We know our children better than anyone else.

We love hard.

We try hard.

We cry hard.

We hug hard.

We hope hard.

We stress hard.

We are hard on ourselves.

We are D mamas.   

Don't judge us because we fret over the details.  To us...Our Diabetic Life is all about the details.

We are 100% responsible for the well being of children we love more than anything on this blessed green earth.

No, we will not back off.

No, we will not calm down.

No, we will not stop making noise.

As mothers, we know that our children are special.  Diabetes makes them stronger.  It makes them resilient, responsible, amazing.  It gives them a sense of humor.  It makes them grow up too fast, and let's them spread their wings too slow.

We wish we could take away the pain. 

                                                                                      We wish it were us.

                                                                                         We are warriors.

                                                                                         We are D Moms.

Hear.   Us.   Roar.

(An oldie but a goodie.  Happy Mothers Day to some of the most amazing people I know!)

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The in-between

I’m going to say it.  Diabetes IS a big part of our life here in the Schuhmacher household.

Don’t have a heart attack from shock-a-prise-ment.  You know it to be true.

If I were a puzzle, diabetes would make up most of the pieces right now.

But here’s the thing.  I never let those pieces snap into place.  They take up a big part of my life, and they are always scattered around…but they are lying on the table, loose…separated. 

Because I always leave space for the “in-between.”

The in-between is like water after walking in the desert for days with no respite.

The in-between is like the breeze after a hot stagnant day.

The in-between is like flowers on a plant you thought was wasted.

The in-between is like the cheese on the pizza.

The in-between is the best stuff.

It soothes out the rough edges of my life and flows into the cracks of my soul to make it all better.

The in-between is the salve to everything that aches.

My in-between is:

Giggles from my children after a long day.

A call from a far away friend that I have desperately missed.

An answered prayer.

The perfect bruschetta.

A clean house with my feet up, catching up on my favorite show.

A messy house with a child’s artwork all over the table and the floor.

A long walk as the sun sets in front of my view.

An unexpected gift.

A nuzzle from my dog when I walk in the door.

A joke that made me snort because I laughed so hard.

The smell of clean laundry.

The song that made me dance in the car.

A good book.

My first paycheck in 15 years.

An unexpected adventure with a friend.

The in-between fills in all the porous cracks and turns Our Diabetic Life simply into, “life.”

Yes, most of the pieces in my life have diabetes written in big red letters.  But even though it looks like our big picture, it isn’t.  It is the boring, repetitive stuff that we do without having to give it second thought. (Most of the time.) It is such an automatic part; there is no heartbeat to it.  It is a stone that we must forever keep skipping on the surface of the water, which is tedious, yes…but while it skips…our efforts produce the ripples.

And everyone knows the ripples are the best, most beautiful part.

Just like the in-between.

Diabetes is a big part.  But it isn’t the best part.

And that is why our family will not only survive this disease…but thrive too.

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More Than a D Mom

Brainchild of uber awesome Hallie Addington, the “More than a D Mom” series continues this week with a self explorative essay by moi.  Hallie’s epiphany came one night when she realized that her entire self surely couldn’t be summed up by one title: “D Mom.”  There were more layers, or she hoped there were anyway.  She asked me if I would be willing to search my own swelly brain, and try to find what defines me…other than being a mother to three boys with Type 1 Diabetes.

I’m going to go a step further and try to find who I am beyond the word “widow” as well. 

I am more than a D Mom.

I am more than a grieving widow.

(Pregnant pause.)

Whoa.  Pretty powerful putting it out there like that.

Those two things may not be all I am…but they both contribute fully to who I am and why.  They can’t be discounted, that’s for sure.  I am who I am BECAUSE of what I have gone through.  D Mom suits me though.  When the title of D Mom is given, one thinks of love, and dedication…what’s so bad about that? Or at least that’s what “I” think of.  I think some PWD might associate “overbearing” with the title.  But I’m not.  So, I don’t.

The fact remains, there are other parts to me. 

I’ve been so lost these past 8 months trying to figure what those other parts are.  Who am I?  I was a wife.  I was half of a marriage.  Now that I’m one…right now…what makes me tick?  What drives me?  It’s hard to be driven with an underlying melancholy.  I try not to be down, but there is that spiritual organism I spoke about before that has a mind of its own.  I’m still on the road to finding out who I am.  But I can tell you what I know brings me joy…and more than anywhere, I think that is a good place start.

I love connecting with people.  I love lifting people up.  I love going to movies and eating popcorn with M and M’s.  I love taking walks in the evening, and watching the sunset.  (See also: I love the sky.)  I love laughing.  I LOVE laughing.  (Worth mentioning twice.)  I love people-watching.  I love adventures.  I love that Danger is my middle name.  I love that Danger isn’t really my middle name, but I put this in here as an inside joke for some friends.  I love making my kids smile.  I love the entire concept of “hope.”  I love the knowledge that I am more than what you see.  I love knowing that I am a soul…a soul that is older and wiser than this 40-year-old body I reside in. I love smiling.  Smiling's my favorite.  I love when I get an epiphany and I can feel it deep in my stomach.  I love writing.  I love food,  (unfortunately.)  I love beautiful scenery.  I love honesty.  I love all people, all personalities…it makes life more interesting.  I love good conversation.  I love good-natured teasing.  I love simplicity, less clutter.  I love music…all kinds.  I love having something to look forward to.

Huh.  That sounds like some cheesy dating site “about me” intro.  (No.  I’m not on any dating sites…don’t get excited.)

I don’t know if that “love” stuff gives you, or me, a better idea of who I am, (even though if you read my blog regularly, none of it should be a shock to any of you,) but it seems that it all adds up to me being a spunky/spiritual person who is hell bent on being hopeful.  No, I don’t make a lot of sense…but that’s ok.  I’m still trying to figure me out anyway.

And I’m thankful, that while I do…you’re willing to take the ride with me, and accept my dueling personalities in spades.

Now go on…get outta here, and find some joy in your day.  I dare you.  (Apparently, I love bossing my readers around too.)

(PS My lovely, hilarious, fun, awesome D Mom/a-lot-more-than-that friend, Lora, is hosting tomorrow’s “More than a DMom” series.  Check it!)

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