Thursday, April 17, 2014

Yin and Yang.

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How do I explain to you that being a mother of three children with Type 1 Diabetes is as completely overwhelming as you think it might be, when here I sit, one of the most completely blessed people on the planet?

How do I explain to you that some nights the exhaustion holds me like a straight jacket…that the nights are all encompassing, and I will my tears to fall back into my body rather than intentionally give in to the fear and exhaustion, when I’m a functioning member of society and have the energy during the day to do everything I must do and so much more?

How do I accurately describe the worry that lays wait in my stomach when a child announces a very low number, the choking responsibility of life, and the rolodex of emergency protocols that run through my brain, when here I sit, appreciating the beauty of life and the miracle of breath that my boys take every minute of the day?

How can I relate to you how much anger I keep inside that my children must endure so many biting pricks, and the ebbs and flows of their bodies instinctual needs for food and water, when I know it is because of this disease our family harnesses an increased measure of empathy and compassion for people around the world who struggle with their journeys too?

How am I to complain to you about medical and insurances systems that are slow, expensive and not completely educated on my children’s Type 1, when my boys have the best tools money can buy and technology millions of times more advanced than just 20 years ago?  When 100 years ago they wouldn’t have survived their diagnoses?

How can I lament about the laboriousness of this disease, the constant stream of numbers knocking knocking knocking all the live long day, and the infuriating knowledge that there will never ever ever be a break from this, when we can take walks by the ocean as a family, and are free to experience any and everything this amazing world has to offer?  Sure, maybe we need an extra bit of luggage, but we’re free to go…

How do I tell you of the frustration banging out of my chest when people make assumptions about my boys and what they can and can’t do, or have, or eat…how so many people are uneducated and have no problem throwing completely insensitive stories and analogies our way, when I have a community waiting to instantly lift me when I’m down, and hold my hand through the maze of uncertainty?

How can I relate the fear, when there is so much calm?

How can I be angry, when I am so thankful?

How can I be sure I can’t do this, when I am surely doing this day after day?

How can I curse a disease that has shaped my kids, and my entire outlook on life?

How can I be so inconvenienced by something that brings me closer to my boys?

How can I wish the world knew, when I’m so grateful they don’t have to know?

Somehow I do.

Somehow the yin and yang of this maddening disease seeps into me and I do get angry and grateful all at the same time despite myself.

And somehow, through it all, I see that all of these hard things empower us.  They make us realize we’re capable of so much more than I ever thought we were.  Somehow I never imagined we’d be able to love so hard, and give so much.

Somehow…we’re living a wonderful life.

Despite diabetes.  Because of diabetes.  Encompassed by diabetes.

I don’t know how I do it.

I don’t know how my boys do it.

We just do.

Somehow.

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Tuesday, April 15, 2014

By small and simple things, great things are brought to pass.

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“By small and simple things, great things are brought to pass.”  It’s a quote that I hear a lot at church, and one that I wholeheartedly believe to be true.

Case and point, two or three days a week my sister in law spends the night and checks the boys sugars at midnight for me. Often more than just midnight. 

I know that she is generally a night owl anyway, and some nights would be up anyway, but I also know that there were many nights she lost hours and hours of sleep to make sure the kids were safe for me.  Sometimes the act might have been small, other times a huge sacrifice on my behalf.

For whatever reason, the past couple weeks have been on the crappy side diabetes-wise.  Mostly the nights have hit me hard.  Her coming in and rescuing me from a sleepless night means far more to me than I can express here.

Last night when my jaw was aching from an impending TMJ attack, I was able to take a half of a muscle relaxant and sleep hard from 9:30pm to 6:30am.  That is in every sense of the word, a miracle.

Diabetes is so all encompassing; doing something small to ease another’s burden is akin to parting the red sea.  Small things are really huge.  Those few minutes of help equate to a more well rounded life for me. A few minute break allows me time to focus on other things this world has to offer.  

"Just a few minutes?" you wonder.  Yes!  Just a few measly minutes changes everything.

Imagine me running a marathon with 100 pounds of weight on my back.  Imagine someone running by and offering to take that 100 pounds for a few minutes.  It’s that colossal.

This translates also into every aspect of our diabetic life.  Technology shaving minutes off a set change?  Priceless.  A child checking a blood sugar without being reminded? Priceless.  A parent insisting a child take the night off and let them handle it?  Priceless.  Another person saying, “I feel the same way” hence taking away the burden for a few minutes that I’m crazy and really not alone in all this? Priceless.  Another parent offering to keep a close eye on my child who has diabetes on a fieldtrip?  Priceless.  A teacher who keeps extra fruit snacks in her desk just in case my child runs out of low supplies?  Priceless.

Small things are never small when a hand is extended with help in its palm.

My life is complicated, I admit.  But I’ve got it.  I’ve GOT this.  But take a few minutes out of your life to help, or even offer to help?  You’ve made my day.

I know so many of you think my life has to be so completely worrisome.  But here I am living it, and really…it’s a good life.  I am blessed.

Because what gets me through are the little things, and those small acts of kindness.

I have a feeling it's the little things that make the world go round.

I know my boys appreciate all the little things I do.  I know your children with diabetes appreciate what you do too.

How do I know?  Stop doing one of those little things and see if they notice. 

I bet they do.

I know sometimes I don’t help people because I don’t have time for a grand gesture of some sort.  I’m sick to my stomach writing that, because if I’ve learned anything the past 20 months it’s this:  service of any size is huge.  I guess what I'm getting at is I hope tomorrow we all take a minute to do something small for someone else.  A smile.  Opening a door.  Letting someone go in front of us in traffic. Giving that dollar in our cup holder to someone on the corner asking for help. 

I don't know.  I just think sometimes less can be more if we actually get up and do the less.


Just food for thought on this late Tuesday night.  I’m going to sleep now.  I have a sleeping pill on board and have big plans to dream long and hard about someone I know in heaven.  

All thanks to a sister in law who said, “I’ll take the 1am check.”

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Friday, April 11, 2014

Keeping the Patient Dignity

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I've had type 2 diabetes for nearly 4 ½ years. Though not a very long period of time, it's still been very challenging...

I've lost weight, gained weight, lost weight; I've low carbed, extremely low carbed, and eaten intuitively; I've exercised myself to death, been a couch potato, and a simple walk around the block lover; I've quit soda, drank only water, and then gotten on diet soda, again... I've had highs and lows, and lows, and highs. I've been proud of myself, and disappointed in myself -- and I've learned just how HARD it is to change myself -- all willpower aside. I've even dealt with some very angry type 1 diabetics and some very unhealthy diabetes forums and communities.

All of these challenges aside, none of these compare to the one big challenge I've had to face while living with type 2 diabetes... keeping my dignity as a patient.

I'm no stranger to the discussion of keeping the patient dignity. I've challenged various prominent diabetes writers on their own biases and deliberate fact twisting, I've written various letters to television programs, to diabetes programs like Take Care of Your Diabetes, to celebrities like Conan O'Brien, and have even hosted an online Diabetes Ice Cream Social event to get people thinking differently (and been skewered for it). My most famous of these discussions on patient dignity, however, happened as an ePatient Scholarship recipient, when I attended Stanford University's Medical School, for their 2012 Medicine X conference. (For that little escapade, I got editorialized by Esther Dyson as someone who was wanting to pass the buck for being fat.) 

And therein lies the rub. We want to find people to punish and blame. We want to skewer people for "giving themselves" type 2 diabetes. 

This is not an abnormal thing. It's actually a part of human nature to want to find vindication for issues -- it's a form of 'negative altruism.' The problem is that the social dialogue that has been crafted in the media, and in part thanks to illness advocacy organizations like the ADA, various medical groups, and those who want to exploit the obesity and diabetes medical communities -- has been centered on discussing obesity and diabetes as though they were a crime against society (i.e., obesity and diabetes are going to bankrupt the economy, destroy the healthcare system, our children, bring governments to their knees, destroy third world countries, bring a second coming of Christ, etc.) So, people with either obesity or type 2 diabetes, are not seen as persons struggling to take ownership of their health issues -- but as people failing to take accountability for a crime against society. "Be accountable for your health," they say. Obesity and diabetes are not seen as personal struggles for personal health ownership -- but as a moral failing of the individual, a crime against society, and as a justification for social outcasting.

This is a HUGE undercurrent in the diabetes dialogue at large! 

It colors the mindsets of many an educator, clinician, registered dietitian, media or TV personality, people trying to sell us goods and services, and of course... persons presenting new technology at a conference like Medicine X. It's a problem. It's a HUGE problem. And when one addresses such a problem, one is portrayed as though one were trying to pass the buck for being obese, or having diabetes. There's a certain self important arrogance about it all... If I point out your moral failing for having 'given yourself diabetes,' then I must be a more moral, and worthier, contributing citizen to the society at large. 

Now, this blog post is not about whether or not one can 'give oneself' diabetes. That would be an entirely new blog post -- and I think I've spoken on that before... My overall view on whether one 'gave oneself' diabetes, however, is that it's IRRELEVANT. Yes, it's irrelevant. Once a person has diabetes, whether or not they 'gave' themselves diabetes is, quite frankly, irrelevant. One can analyze a person's decisions and life style choices till the cows come home... but once that person has AIDS, cancer, diabetes, heart disease, etc... is it now time to start treating them without respect, or dignity? Should we spit on their faces, and socially mock them while at the same time claiming to try to help them? "I'm going to help you, fatty, because you can't help yourself! You have no self control, and you can't stop eating!" 

I think many misunderstand my words here, when I speak of patient dignity. Patient dignity is NOT a patient passing the buck; it is not a patient not taking ownership of their health... Dignity simply means treating someone with a certain basic level of respect for being a human being in the midst of a trying, and challenging situation -- whether of their own doing, or not. We are all human; none of us is above the struggle to make the best choices. Though this is another topic worthy of further exploration in a different blog post, the food choices many of us make day in, and day out, cannot be completely and genuinely labeled as 'mistakes,' for they are the product of our programming as children, as members of some particular society, and as mammals evolved (thanks to natural selection) to prefer more nutritionally dense foods, especially in order to better face periods of famine. While many have had the blessings of genetics, and a healthier food environment overall (familially and culturally), it takes enormous effort to change oneself as an individual, because it is not simply a product of will -- it is a product of reprograming, and reprogramming is HARD. You aren't just fighting your family's bad eating choices, you are also fighting millions of years of evolution! So it is thus, unfair to treat these issues as though they were black and white, and as a people's moral failings, or as a crime against society. Also -- the person with type 2 diabetes is NOT accountable for their health to you -- so get over yourself. Type 2 diabetes has many different triggers (not causes), of which obesity is just one of them, and the others are not quite as uncommon as people want to think. The scientific and peer reviewed studies showing this are there -- but they seldom get public light, because they are NOT media-attention worthy. Sensationalism is simply what sells. 

All of these things aside -- the overall goal of ANY health initiative by any group is to make positive change. But if we want to help a patient community to make positive changes toward a general health improvement, what we want to do is focus on that 'positive' word. Putting the word "skinny" in front of your company's marketing, cracking jokes about a community's obesity or bad eating habits, how they gave themselves diabetes, stereotyping, claiming diabetes can be cured (or blaming people for not curing themselves), turning them into a 'meme' or down talking to them is NOT going to make positive change. Instead, all it will create is an underculture of social pariahs who are not just denied services and tools, but who do not seek the necessary medical attention they need, the tools and education they deserve, or the new lease on life that they could have. In other words, the culture we have NOW.  

If you make it too embarrassing and shameful to have diabetes -- people aren't going to work toward not getting diabetes... People are still going to get diabetes, and they are going to die in silence, from diabetes. 

In the end, the person who'll end up costing more to a society is not the person with diabetes: it is the diabetes bully. 
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#dayofdiabetes

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Yesterday I participated in #dayofdiabetes on Twitter.  It is a day set aside to write down everything you do, and everything you think about diabetes.  I only scratched the surface of what our day was like, but thought I should compile the day here.

To set the stage for the beginning chapter I would title it, "The high that never was."  A couple hours before the official #dayofdiabetes began I bolused B for a 489 that had more to do with the kiwi juice on his fingers than the actual sugar in his body.  Nevertheless, I got 4 hours sleep.

The fun continued from there...

























This morning I woke up to yet ANOTHER site ripped out, this time on a different boy.  And then FINALLY, after five ripped out sets this week I realized...maybe there was a problem with that particular box of sets?  Sure enough, when I looked at the box it had a big red 11 scrawled on it.  I wrote that to indicate this box was obtained in 2011 and only to be used in emergency if we ran out of other sets.  Somehow, one of the boys found it and opened it up to use and the rest is history.  Just another day in our Diabetic Life, I suppose.

Other tweeters summed up #dayofdiabetes, I'd like to share with you their closing thoughts.




I couldn't possibly sum up everything that goes through my head in one day.  Just like the above tweets, diabetes is embedded in me.  Part of who I am and how I think.  One day I won't have to think so much about it.  You can see that I don't have a lot of info about J above.  He takes care of himself 90% of the time, and both L and B are on their way to that place too.  They have been practicing set changes and working on counting their own carbs.  My job is to get them to a place where they are confident in their independence.  Until then, I'll be there to remind.  To act.  And most of all, to worry about all the details.




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Tuesday, April 8, 2014

"The more you pour out, the more life will be able to pour in."

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The orbit is sure.

I orbit my grief as the earth orbits the sun. 

My seasons come and go, and thankfully I’d been able to enjoy somewhat of a lengthy respite from the burning loneliness. 

Until a couple weeks ago.

A couple weeks ago my Facebook feed burned up with news of a family fighting cancer.

A family that I have never met, but know by name.

A family that lives in the next town over.

He is a teacher.  A coach.  A Husband.  A father of four young children. 

And he has Melanoma, just like Ryan.  Brain tumors, just like Ryan.  The same mutation Ryan had.

And in one fell swoop all the emotions that have been sitting on the edge of my consciousness whooshed in like a tsunami of untethered grief.  I was taken completely off guard, and in my moment of panic, I did what I’ve always been taught to do in dangerous situations.

I stopped (being happy)

I dropped (everything important I was working on)

I rolled (into denial.  Trying to pretend it wasn’t happening.)

But my tactics failed.  Haven’t I learned so many times already to just embrace the grief?  To acknowledge it and talk about it?  Taking my feelings and trying to hide them under my pillow full of tears was only exasperating the problem. 

The loneliness swelled.

The despair of my loss heightened.

And the anger?  Fierce.  I HATE BEING ALONE!  Why?  WHY!!

Suppressing the emotions has been a feat in itself.  I can’t explain how hard it is to fully function in society under such conditions.  I desperately tried to "fake it till I make it," but as it turns out, desperation is anything but a salve for the wounded.

Actually acknowledging it was happening turned out to be the turning point for me.  I could feel the fog laying heavy on my life.  The emotional weather so debilitating I could almost see the cloud following me around as soon as my eyes opened in the morning until they closed at night.  The longer I allowed it to happen, the heavier the burden became.

So one morning I woke up, looked the despair square in the face and said, “I have hope.” 

“This won’t last forever.”

“I don’t want to live like this.”

“I’m going to try to change things.”

“Experience tells me that light chases away darkness.”

So I called on the light, praying for help.

And it came. 

The season is shifting and I feel the warm wind of spring on my face.  I’ll be able to continue forward, but now realize…I must pay it forward too.

There is a family in the darkest of circumstances who needs financial help.  The father, the only provider, cannot work.  Can you donate a few dollars to their family?

Turning my back on them was not the answer.  Turns out helping other people makes you forget yourself.

“Sharing what you have is more important than what you have.” ~Albert M. Wells, Jr.

“God loves the world through us.” ~Mother Teresa

“Sharing makes you bigger than you are. The more you pour out, the more life will be able to pour in.” ~Jim Roh

Here is the fundraising page for this family.

Help if you can.  And help if you can’t.  I have a feeling if you do, you will be blessed tenfold.

I was.


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Tuesday, April 1, 2014

Best of the 'Betes Blogs: March 2014

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I was asked to host this month's Best of the 'Betes Blogs.  This just in:  I’m never ever ever doing it again.

Having to choose one nominee over another was pure torture for me.

Let’s have a moment of silence for my nerves. 

………..

………..

I asked Sara if choosing everyone was an option.

She just laughed at me.  Like “EVIL” laughed at me, and said she had faith I could do it.  She even threw the words, “YOU CAN DO THIS!” in my face.

Maybe she was right…but let it be known, I can’t even decide what kind of dressing to put on my salad.  Balsamic?  Ranch?  Blue Cheese?  Thousand?  They are all wonderful!  Just like these blog posts.  This was way harder than I anticipated.  Obviously though, once I realized I wasn’t deciding on the Nobel Peace Prize, I went with my gut and made the hard choices.

Without further ado:  Below please find the Best of the Betes Blogs for March 2014!

BEST USE OF HUMOR:
Kim from Texting my Pancreas for coming up with the ingenious “Starch Madness.”  How do you treat a low?  Check out the brackets HERE.

BEST USE OF PHOTOGRAPHY:
Zakary at Raising Colorado for standing up to the boxes and making grab and go set changes a thing! 

BEST USE OF ADVOCACY:
Bennet at Your Diabetes May Very and his use of the phrase, “Meth or Insulin.”

BEST STORY OF A D MEET UP
Goes to Jess at the T1D Active Living Website, where she engaged a MLB player within the twitterverse and soon after spoke to him ON. THE. PHONE.

BEST NON D RELATED POST:
Melanie at Dreams, Dishes, and Diabetes talks dead mouse and semi dead bird.  You know you want to read it!

BEST POST BY A TYPE 1:
Our beloved Ninjabetic knocks it out of the park with this inspired way to explain diabetes to a muggle.

BEST POST BY A TYPE AWESOME
Goes to Scott at Arden’s day, where Murphy’s Law turned a pit stop upside-down.
 
BEST STORY OF A D MISTAKE:
If you happen to have Type 1 Diabetes, and you happen to be getting married, you have probably gone through every single possible scenario that could go wrong diabetes-wise at the wedding.  But what if what went wrong, went wrong with your brother, and not yourself.  Katie at Diabetic Advocate blogs about another DOC save!

BEST MOTIVATIONAL POST:
Surfice Fine.  She mustered up the courage to connect with a complete strang(er) about diabetes.  How many times have I had the same conversation in my head?

BEST DIABETES ART:
A flow chart by Sarah at Insulin Pens Don’t Have Ink.  Follow it if you have an opinion about someone’s diabetes.  Handy when you’re in a pinch!

BEST COMMENTER:
Melissa from Sweetly voiced, of course!

Thanks to everyone who sent in nominations, and congratulations to all the nominees!

A Sweet Grace
Bigfoot Child Have Diabetes
Candy Hearts Blog
D Life Blogabetes (Carey)
Darn You Pancreas
Death of a Pancreas
I Have the Sugars
InDpendence
Me and D
Moments of Wonderful
Our Diabetic Life
Pancreassassin
Probably Rachel
Rantings of a T1 Mom
Rolling in the D
Six Until Me
Type 1 Tot
Pam

Also, if you see a post in April that stands out to you, go HERE right away and nominate them for Best of the 'Betes Blogs April Edition!


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Friday, March 28, 2014

Ideal is not real.

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95.

89.

90.

At 11:00am in the morning, these numbers are money.

At 11:00pm at night, these numbers are no bueno.

I was hoping to dream of something other than numbers last night, but the fates had other ideas. 

My dilemma?  I was exhausted.  Lately I’ve been priding myself on how much energy I have.  I wake up alert.  I go through my day alert.  I go to bed alert.

Not last night.  Last night at 10:00pm I fell asleep hunched over my keyboard.  I woke up in a haze at 11:00, completely discombobulated.  Innately, I knew it was time to check the boys…but as I stood up my body continued to slumber.  Like a robot on autopilot I stumbled into the boys rooms saying a little prayer, hoping that all would be well.

Everything was a little too well.

Fifteen minutes later I was in bed, wide awake.  Keeping children alive does that to a person.  I pondered the perfect numbers.  What would be the perfect number for my boys to fall asleep at?  The one number that would allow me not to worry and in turn result in a good nights sleep.

After grappling with my conscience for a good half hour I came to the conclusion that there is no perfect number.  And there never will be.

Because in a perfect world, the 95, 89 and 90 would be exactly where my boys need to be.  In a real world though, those numbers just aren’t a realistic for the night.  Hormones, exercise and food dictate that those numbers could easily fall dangerously low.  They are way too risky.

In the real world, I need the numbers to be in the high 100’s for me to sleep.  Which often means they’ll wake up in the 200’s.  In a perfectly healthy world, that isn’t ideal. 

Ideal: (adj.) existing only in the imagination; desirable or perfect but not likely to become a reality.

Higher numbers for my boys to ensure sleep for myself is sometimes a necessary trade off, but never a comfortable one.

Our last Endo appointment was months ago. Our Endo insisted on raising my youngests' target numbers to 175 at night.  Every bone in my body ached thinking about the selfishness of that choice.  But I knew at this time in my life, it needed to be so.  Their A1C's were plenty low enough to accommodate this change…it’s just I’ve always felt a deep responsibility for the nighttime numbers.  It is the time with the least variables.  It is a time where I have the most control.  It is half the battle.

And if I lessened my fight, would that be the opening the door to diabetes, allowing it to wreak havoc on my family?  Would everything fall apart?  In my experiences, small changes have a tendency to do just that.

It took time to adjust.  Some mornings they would wake in the high 200’s, and my heart would rip in half.  I’d spend the morning sewing it together with reason, repeating my mantra over and over in my head:

“It is ok to let my boys have higher numbers at night sometimes so I can get a restful, full nights sleep.” 

I pretty much had to brainwash myself into believing that. 

But when I have to, I let it happen, and shockaprisingly enough, I’m beginning to believe it.

At 11:00pm last night I wrote the boys’ numbers on the whiteboard, staring pensively at the two digit figures, trying to decide what to do.  Should I treat gently and wake in a couple hours to see where they are going…or…should I treat in such a way that I know they will be safe…so I can sleep.

For a mother, the answer isn’t easy.

In the end I allowed myself some leniency, repeated my mantra, and adopted some faith.  I went to bed last night with all three boys on Temp Basals, and 10 grams of carbs in their bellies.

They woke up 92, 144 and 153.

I’m not fooling myself…I know that a lot of what made up those numbers is just plain luck.  Sure, I had a little bit to do with it, but let’s be honest…diabetes does what it wants to do when it wants to do it.

Playing the lottery with my boys’ lives is not fun.  In a perfect world, I’d never have to.

But in the real world?  I do it every day and every night.

When I SWAG a treat.  When I send them to bed.  When I send them to school not seeing the amount of cereal they poured for themselves, but giving them a carb amount anyway.  When I bolus for popcorn before a movie not knowing exactly how much of the bag they are going to eat.  When they run the track.  When they are going to play at a friend’s house.

It’s always guessing.  It’s always weighing what the safe option is vs. what the ideal option is.

A lot of give and take.

Sometimes I give my sleep away.  Sometimes I grab my sleep and hold on to it for dear life.

Because the truth is, I don’t live in a perfect world.  There is no such thing.  Also, there is no such thing as a perfect pseudo-pancreas.

I’m real.  My decisions are real.  And so far, every time, it’s always worked out in the end.

I have to lean on that. 

And know that in most cases…my best is good enough.

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