Wednesday, November 30, 2011

Diane Sawyer, I'm ready for my close up!

I've selfishly spent this month spouting off thoughts from my swelly brain. I have blogged every day in the name of Diabetes Awareness and I have yet to write a post that educates the masses. So here are my educating thoughts in bullet point form...just in case, one day, the world decides it wants to know the facts about Type 1 Diabetes.

* When you hear about diabetes on TV...chances are, you are hearing about Type 2 Diabetes.

* The notion of lose weight and lose diabetes is a complete hoax. Diabetes never goes away. If you have Type 2 Diabetes, You may be able to stop medication if you lose weight and change your diet...but even if you do, diabetes is still there waiting. It isn't gone. It will always be there lurking, and the fact remains that many can lose weight and still cannot go off their medication.

* When the word Diabetes gets tossed around, for some reason the first thing the world does is place blame on the person who has it. They think it is their fault. They think that they are lazy, and need to change their diet. This misconception is even thrown out there by trusted people in the media.

* You should know, Dr. Oz has no clue.

* Part of the problem is the television likes to talk about "diabetes." There is no "diabetes." There is "Type 1 Diabetes," "Type 2 Diabetes," "LADA," and "Gestational Diabetes." There may be even more types than this.

* My boys have Type 1 Diabetes. They have to fight the stereotypes and misconceptions every day...even though this disease has nothing to do with diet. It has nothing to do with lifestyle. Take everything you know about diabetes and flush it away, because 1: They can eat that. And 2: They didn't eat too much sugar to get Type 1.

* Type 1 Diabetes is an AUTOIMMUNE disease. They were born with the predisposition to get the disease and then there was a trigger that made the body attack itself. Was the trigger an illness? Was it an environmental trigger? No one knows for sure. But what the doctors DO know is there was nothing in place to prevent the process when the attack began. J was 8 months old and his weight was under 17 pounds when he was diagnosed. Not fat.

* Diabetes is all encompassing. It affects every system in the body...the complications are what type 1 and type 2 have in common. Because of this we need to keep tight control of the numbers, but that is near to impossible in ever growing boys. We take things one number at a time...but everything effects the numbers. Food, stress, exercise, weather, excitement, fat, protein, sleep patterns, illness...EVERYTHING!!!

* Diabetes never sleeps. Blood sugars fluctuate even at night. Because of this, most people with type 1 check their sugars in the wee hours of the morning. We have an alarm set for 1am every single night.

* There are no days off with diabetes.

* My boys test their blood sugars at least 8 times a day, each. That is on a good day. That is $25 dollars a day for test strips ALONE. Insulin is $100 a bottle. We use a 1 bottle every 5 days. And don't even get me started on the cost of pump supplies!

* The emotional toll of diabetes is oft not recognized. As a parent of three type 1's, the worry can be overwhelming. The cogs in my brain are constantly turning numbers around and figuring on the next step. When my boys get older they will take over the worry for themselves. As a mother, I wish I could always be their back up pancreas. I would bear their burden forever if I could.

* Insulin is not a cure. Let me say it again: INSULIN IS NOT A CURE. It is a volatile medication at best. Predictability is completely lacking. They can eat the same diet every day...exercise the same every day...keep everything constant...and everything WILL be constant, except the blood sugars. There are just too many factors to keep it all "level." Blood sugars fluctuate. It is a huge burden to bear.

* High blood sugars are uncomfortable, and scary as they lend to future complications. Low blood sugars are uncomfortable and ultra scary as they can lead to passing out, seizures, coma...death.

* My boys can't mindlessly eat. They must count carbs. They must give insulin for every morsel of carb that enters their bodies. There are very complicated ratios programmed inside their insulin pumps. Insulin pump? Their constant companion. They need insulin in their body 24 hours a day. Even a few hours without insulin can cause severe problems, even hospitalization.

* My boys can't mindlessly exercise. They must adjust their insulin, have an backpack full of emergency supplies. A blood sugar monitor. Test strips. Glucagon. Fast acting sugar...

* Did you know that apple juice is a life saving medication in our home?

I could talk for HOURS about Type 1 Diabetes. There are SO many things I want the world to know! But I'm going to let my three boys who live with diabetes end this post today.

8 year old L wants you to know this: "Changing your sets. That is the hardest thing about diabetes. It is pretty hard. You have to rip out your old set and then use a needle to put in a new set. It feels needley. You know what I mean? It just really hurts. Needles are not fun because they are dangerous...because they are sharp. And they are real."

10 year old B wants you to know this: "Diabetes is annoying. It is a lot of extra work all the time. I'm always bleeding! Shots are painful and I always have to get them. I have no choice. I want to be like normal kids. Like, it would be nice not to have to always type numbers into my pump. It would be really nice not to count carbs and always worry about my diabetes. Sometimes I really worry. The only good thing about diabetes is our dog, Lawton. We wouldn't have him if I didn't have diabetes."

14 year old J wants you to know this: "Diabetes is a mix of good things and bad things at the same time. Most of the good things are childish, like getting out of school for doctor appointments and getting good snacks when you are low. The bad things definitely outweigh the good things. If you don't monitor yourself closely you could feel sick and throw up. You have to prick your fingers every day, and every three days you have to get a big painful shot on your belly to change your pump set. Diabetes sucks for the most part. (Can I say sucks? Stinks doesn't seem strong enough.) The most annoying part is testing my sugar all the time....and to remember. If I forget to test I usually get high blood sugar and that comes with a headache, stomach ache and I get really grumpy. There is nothing really fun about diabetes."

And that my friends, ends day 30 of National Health Blogging Month. I have officially achieved my goal of blogging every day in honor of Diabetes Awareness Month. I am honored that you took time out of your day to read my blog. I plan to take the rest of the week off from blogging...but you know me...I might have to pop on earlier than planned to purge my emotions...or chronicle something hilarious. Bless you for taking the ride with me...

Here's to a cure.

Tuesday, November 29, 2011

I reject the reality, and substitute my own.

In reality, I should be rocking in a corner with drool running down the side of my mouth.

But in my own world, It's all good.

In reality, I should be completely bald from pulling my hair out.

But in my own world, I got this covered.

In reality, my pointer finger should be running up and down my lips...you know, like crazy people do in the movies?

But in my own world, I smile at the absurdity of it all.

In reality, I should be like a broken record screaming to God, "Three? Really? THREE!!!!"

But in my own world, I thank the good Lord for my many blessings each and every day.

In reality, I should have a therapist at my disposal 24 hours a day, 7 days a week...including and especially holidays.

But in my own world, all the therapy I need is drinking hot chocolate with friends who I know, "get it."

In reality, I should be a shut in. My boys should never leave the house and I should have a giant magnifying glass on them every minute of every day.

But in my own world, we live.

In reality, the technology that is there is not enough. I want more. I want a cure.

But in my own world, I'm thankful for every little thing we have to fight this disease. Including but not limited to, insulin, test strips, pumps, cgm's, ketone strips, 3 second countdowns and apple juice.

In reality, my heart should not be beating. The heartache should have shut it down long ago.

But in my own world, my heart swells with love for my children, my husband, my family and each of you who are the "same," who feel the "same."

In reality, there should be a bruise front and center on my forehead, marking the spot where I bang my head all the live long day trying to figure out basals and ratios.

But in my own world, I know...somewhere deep down...that I can do this.

The problems come only when the lines between the reality and my own world fade. Navigating the fog back to my own world can be a neat trick sometimes...but I always get there.

I like my world better than the real one.

Because in reality, I am the mother to four boys, three who have type one diabetes.

And in my own world...the three may have diabetes, but diabetes doesn't have them.

(Day 29 of National Health Blog Post Month is complete. Ya know I'm doing in honor of Diabetes Awareness Month. Tomorrow is the last day! Woo to the Hoo!)

Monday, November 28, 2011

Today's random Meri musings.

I laid out clothes for B and L today. They put on each other's outfits and they both fit. Sure B's jeans were just a tad short, and L's needed to be rolled up three times...but it was all good. (Of course I didn't realize the snafu until they were walking into school.)

Snack time sugars were pretty rockin'. I'll take that victory thankyouverymuch!

L called after his snack recess and said he was 123 but his body was telling him he was going to be low soon. Me, being the philosophical mother that I am, told him to have a little juice because he should always listen to his body. An hour and a half later he called in at 213. I don't want to say anything, but his body was totally playing him...

I need to clean out my purse. I'm considering having a Christmas Contest...whoever can guess the correct amount of stray strips in my purse wins. Stay tuned for that one.

In my book, Christmas lights equal happiness.

Hiding a pickle ornament on a tree and having your children compete to see who can find it first brings all kinds of joy.

There is a chance my boys may be a little too competitive. For the life of me, I have no idea where they get that from. (Though, I did kick butt at the family charades game the other night! BOO YEAH!)

Charlie Brown is a big deal around here, especially since Charles Shultz lived just down the road. I'm just going to come out and say it...Charlie Brown specials are boring. (I totally deserve the hate mail on this one, but the truth sets me free!)

I'm pretty much going to flip my lid the next time I am asked, "how many carbs?" when there is no plate in front of me to count. Seriously, the boys make their plates and then come into the OTHER room and ask me how many carbs without me having eyes on any portion sizes whatsoever. Yeah, I'm a good swagger, but I'm not magic people.

There is a funny story about the word 'barth,' but according to one of my boys, I'm not allowed to share.

Another two field trip forms came home today. I'm not kidding.

We are trying to wrap up our Christmas shopping. For L, our motto is quantity over quality. We learned our lesson from last year.

Two words: Christmas!!! Cookies!!!

A little something I've learned this week: Teenagers blame you for everything. Even homework. I can't get over how unfair it is. It's not like I'm CALLING their teachers and recommending assignments for crying out loud!

The drawer that houses my boys toothbrushes looks like a nuclear toothpaste bomb went off inside.

Because he is the baby of the family L needs to be prepared for more squishes, more kisses and hugs galore. It is out of my control. This mama needs to soak in all the love while she can, period.

My oldest is doing a project that is having him investigate different colleges and majors. I'm just pretending it isn't happening. Ignorance is bliss, right?

Bedtime numbers are being reported right this minute. B: 124 L: 101 (temp basal set for zero for a half hour.) J: 221. (Pretty sure he needs some basal changes, AGAIN. :P~~~~ to puberty!)

Songs that were in my head today: I've Got the Moves Like Jagger, and Dancing on the Ceiling. Random words floating around my head today: 'Xioa Dre'...from Karate kid/Kung Fu Kid. I can't make this stuff up!

And that is that!

Goodnight friends! Day 28 of 30 of National Health Blogging Month complete!

Sunday, November 27, 2011

Let's make a deal...diabetes style.

Welcome Meri to Let's Make a Deal! WOOO HOOO!





Clap!!! Clap!!! Clap!!! Clap!!! Clap!!!



Tomorrow the boys start school again. As the audience well knows...all three of your boys have had higher blood sugar numbers during their break. Tomorrow they will be back on the playground and I know you are lost about what to do.



So let's do what you do best...GUESS!



Let's make a deal!



Clap!!! Clap!!! Clap!!! Clap!!! Clap!!!

To start out, you have three boxes in front of you.



Box #1 has you continuing to up their basals because of the highs as of late.



Box #2 has you Going back to the ratios you used before Thanksgiving break.




Box #3 has a temp basal inside. Up the basals just a touch in the morning.



It is time to make your choice Meri! Which will you choose?



Me: "Do I have to choose right this minute?"



Without a doubt, yes you do! School is just a short 12 hours away!! Come on Meri! You can do this! EVVVVVERYONE is waiting for you to make your choice!



Me: "I don't know what to do. Can I crawl into a hole and make my husband decide?"



It's all on you Meri, you know that! The clock is ticking...your time is almost up. Don't think about them passing out on the playground. Don't think about them spending the day at in the bathroom or at the water fountain. JUST CHOOSE!!

Me: Since I'm given no mercy to put it off...I'm picking box #2. Better safe than sorry.



Finally a choice! Tomorrow your prize will be made known unto you. There are three curtains with three carefully chosen prizes hiding behind.



One curtain hides a perfectly pleasant day with no big blood sugar surprises.



Curtain number two holds frantic phone calls, ALL. DAY. LONG.



And the third curtain brings constant troubleshooting for the entire day/week.



You will be notified of which curtain you win by 10:15am tomorrow!



Thank you so much for playing Meri! Best of luck to you!



You are gonna need it...



Me: And here I thought games were supposed to be fun...





(This concludes day number 27 of National Health Blogging Month. Three more days. You are all saints for putting up with me. For serious.)





Saturday, November 26, 2011

Day 4658

The battle is making me weary.

My armor is dented.

My weapons dull from constant wear.

My will is nothing to be depended on.

One minute I'm running into the fray, our battle cry screaming from my tonsils.

The next minute I'm curled up in a ball hoping no one notices me.

I'm going through the motions...dripping with emotional defeat, but not giving up to the numbers.

I beat every one of them. One number at a time. But I can't help but wish that the numbers would be whisked away...flushed...cured.

For now and for always they continue to swirl around my brain. The parade of numbers marching ever forward.

They are constant. No break. Ever.

Emotional roller coaster much?

But as I do the night check and see those sleeping faces...consumed in peace. It is fuel for my soul.

Those faces keep me sane. They make the battlefield seem like only a bad dream.

It is their laughter that frees my guilt.

I will keep moving forward. I will keep blogging my way through the emotions of it all.

I'll zig and zag my way through the number minefield and I'll find safety in our ratios.

I can do this. With my boys by my side...I CAN and will do this.

Self affirming pep talks help. Writing it out makes sense of it all.

This my friends is what you get after the 10:00pm check with three boys who are low.

Sometimes I just need to talk my way out of the tears.

This will wrap up day 4658 or our diabetic life...and day 26 of National Health Blog Posting Month.

Your Diabetic Feng Shui

Stop and smell the flowers...
Stop and smell the flowers...
She stood proudly, next to the small, Thanksgiving pie table, and announced to the world that "This is Liz. She's a diabetic, and every year, this is the ONE time she will allow herself a piece of pie." Great, thanks, lady. Thanks for outing me like that in front of everyone... I really needed a roomful of eyes peering down on me the moment I decide to have a second slice. 
My best friend's mother in law really means well. She does. She, herself, is diabetic, albeit she is a lot more liberal with her food intake than I am. I don't think she has a great understanding of what's going on in her body, or that perhaps how her body handles food shouldn't be, entirely, left up to the pills she takes... but at least she tests, and pays attention. At least, that's what I like to tell myself, anyway. She's in her late 70s, has a lot of very serious health problems, a big time smoker, and not at a place where she's open to making many changes. But the fact that she tests as often as she does is really quite great, considering how little information doctors give older folks with Diabetes, and how Medicare curtails test strips. I'm not sure how well she uses the information, though...  But she DOES test, and she DOES mean well. Maybe I can credit Wilford Brimley with that.

This whole mess is my fault, really.

When I was diagnosed, I was running HARD on tight control. Two years ago, I didn't really give myself much time to sit through and think on things. The stark images of the last few years of my father's life quickly came to the surface, along with fear, anger, and resentment. I believe it was that same week, and I got a phone call from my best friend's husband asking us to come over for pizza. Kind of embarrassed, I really didn't know quite what to say... except "I have diabetes." They had already planned out this expensive meal, all home made, in exchange for asking my husband to come over and look at their computer, and router. I really didn't want to make anyone feel bad, so I tried to muddle through the meal, tried to manage my numbers, failed miserably, and then explained to my friend that I couldn't have that many carbohydrates, to please try to help me with things like salads, etc., or other low carb alternatives to meals.  What's wrong with that, right?

Well, at face value, not much... BUT...

(and there's always a but, with Diabetes... It should be called Diabut, really... or Diabutt in some circles. heh Or just plain ol' PainInDiaButt...)

There can be LOTS wrong with it... If you are newly diagnosed.

For Starters, Diabetes Needs Grieving... 

A part of who we are, is really, GONE, and that needs to be acknowledged.

We may not know who or what we are, at that time, but we know that we will NEVER be the same again. We need some processing time to help dig ourselves out of the deep emotions we might be experiencing so that they don't end up marring the GOOD that's STILL in our lives, by being accidentally misinterpreted by others... We don't want, for example, to instill FEAR in others that they can no longer hang out with us, or have us over for dinner. We can be in control, really! Even if it doesn't seem like it at that time... :) My friends love me, but they are quite hesitant to have me over for dinner, and when they do, they bulk up on low carb everything... lol  (Thanks, by the way...) Lots of folks WILL ask stupid questions, too; it's the nature of the beast. We need to be able to go outside, without weeping uncontrollably... or murdering people.  Once we've had some time to settle down... we can try the experience again, from a place of self awareness.

Diabetes Needs Feng Shui...

Now, I don't really care for new age views very much... (nor about most things, really...) but the notion of Feng Shui is helpful for this exercise. Before you go to the library and start reading up on Eastern philosophy, let me explain a little bit... According to About.com, Feng Shui is an ancient art and science developed over 3,000 years ago in China. It is a complex body of knowledge that reveals how to balance the energies of any given space to assure the health and good fortune for people inhabiting it.

Now... I don't need to be an old Chinese philosopher, to know that Diabetes IS an art and a science; that it is a complex body of knowledge that can reveal how to balance our body's energy (literally, glucose), and our health, and can give us 'good fortune,' for our bodies which we inhabit, IF we take care of ourselves well (most of the time). Each one of us, just like each dwelling, is different and needs to be 'balanced' accordingly. Each one of us needs to find ways to deal with the positive, and negative aspects of our lives... Each one of us needs to learn that in order to be healthy, we need to cheat, and in order to cheat Diabetes, we need to be healthy. That's our Diabetic Yin Yang. And just like it supposedly takes years and years to master Feng Shui, it can take years and years to master Diabetes.

What is Balance, Though? 

Here's the problem...
There are a MILLION experts on how you should live your first year of Diabetes, and how to get started, but there are NOT many on how to finish.   
Diabetes Needs Realistic Expectations

The balance of Diabetes is in pacing ourselves; in understanding that Diabetes is NOT a punishment, or a call to perfection. In fact, we are perfect in that we are IMPERFECT. We can't show others how to effectively live with this disease until we have a few knee scrapes to show for it.

It's not a NOT a sprint. We say that all the time, but it truly doesn't hit home for many until after a few years have passed trying to actively manage the disease.

If you keep running, and running hard, you'll find Diabetes is EXHAUSTING. For me, this "simple" diet and exercise thing to try to mimic a perfect pancreas might have seemed 'easy' at first, but it takes SO MUCH THOUGHT, and trickery... Yes, trickery. It's like I'm some kind of witch doctor; my mind is FRIED from all the overthinking of simple meals... and all the crappy supplements (and medications for other conditions) to keep things in gear.

You have your spaghetti, as usual... I have it after 12 hours of sitting in the fridge so it can develop resistant starch. You have your spaghetti, with bread sticks... I measure mine dry, before boiling, and only consume 1 serving, balanced with at least 3-4 servings of vegetables blended in.

We take care of ourselves more than ANYONE I know. Aside from athletes, I really don't know many people who are healthier than a diabetic. Constant monitoring, eating well, balancing carbohydrates, proteins and fats, constantly thinking about what we put in our bodies... new ways of making or preparing meals which will cut back on, or eliminate spikes. Constantly working hard toward intangible goals.

Let's be clear here. I believe YOU can do this. I believe WE ALL can do this.  It's hard, it takes work, and dedication, but we can do it... But when I say Diabetes needs to be realistic, I don't believe for a second that people don't have it in them to take good care of themselves. This is NOT about not trying hard enough. I don't believe ANY of us is lazy.

But if you have been living with Diabetes for less than a year, there are some things you need to know:

  • You are NOT Diabetes; 
  • You are NOT grounded, or in "time out," for your previous eating habits (whatever they were); 
  • Your NON diabetic friends are JUST as important as your diabetic friends;
  • You are NOT your A1C; 
  • You are NOT your glucose meter readings;
  • You are NOT perfect, BUT you are NOT out of control;
  • You are NOT your weight; 
  • You are NOT your diabetes management method; 
  • You  are CREATIVE, and you can MANAGE, without the need to deprive; 
  • You are HUMAN, and HUMANS live, and most importantly... 
  • NO ONE diets on Thanksgiving. 
Everyone who shops Black Friday knows that balancing a checkbook religiously does not mean you can't splurge on occasion, for a Big Screen TV. Neither that splurge will bankrupt you, nor that extra piece of pie at Thanksgiving is going to make your foot fall off, or make you gain 5 lbs overnight.

So, my advise to you... on your second, or third year... is to loosen up. You were in a scary, close call of a health situation, but you're in a place of control now.  It's now time to start finding your balance... the happy medium that doesn't cripple you emotionally, but doesn't cripple you physically, either... your Diabetic Feng Shui. Your Diabetic Yin Yang. Oh, and if someone comes and tries to guilt trip you for drinking diet soda, or for not making "fat free" pie, or stuffing... tell them to fuck off.  

Friday, November 25, 2011

Getting into the Christmas Spirit.

‘Twas the night before set changes and all through the home
Every boy slept quite soundly, nary a moan.

The monitors sat on the counter with care,
Anticipating a parent soon would be there.

The children’s fingers were hiding warm under their cheeks
Safely hidden from needles, a welcome retreat.

And I in my robe, and Ryan in his shorts
Had just settled down, for a napper of sorts.

When out in the hall their arose such a clatter
I sprang from my bed to see what was the matter.

Away to the door I flew like a flash,
My feet not touching the ground, a hasty worried filled dash.

When what to my blurry sleep deprived eyes should appear,
But one little boy staring at himself in the mirror.

His eyes all glazed over, his face no emotion to show
I knew at that moment my son must be low.

More rapid than reindeer I flew to the kits
Stepping over Legos, being careful not to trip.

Now Lancet, now monitor, now wet napkin too
On cocking the lancet, we have blood drawing to do!

To a finger so callused and speckled with dots
Now dash away, dash away, dash away sad thoughts!

As I checked his blood sugar to make sure all was well
I saw a number that made me swoon and I fell.

And then in a twinkling I saw above me,
My husband holding a juice box, to fix that 43.

He was dressed in his underwear, not a sock on his foot
And his hair was all tousled…he gave me a look.

His eyes bright with love and a crooked smile to match
He looked like a peddler, a cute one at that.

The lines around his eyes so wrinkly and tired
But his face shown of kindness and a hope unretired.

He helped me off the floor and he gave our son juice
I knew in a flash, he got his much needed boost.

I turned to our boy who began to giggle with glee
His pump shook up and down from his tummy clippy.

He was out of it; his jolliness seemed out of place
But I chuckled despite that blank look on his face.

A wink of his eye and a twist of his head
Soon gave me to know I had nothing to dread.

He spoke not a word but went straight back to sleep
His fingers under his pillow, shoved down there deep.

And giving him a kiss just the side of his nose
I went back to my room, cursing the lows.

I set my alarm and gave my husband a squeeze
I whispered to angels, “A little sleep help please?”

But I heard a faint echo ‘ere I closed my eyes tight
“Love you mom and dad…see you later tonight.”

(I must admit I was out in the wee hours of the morning with my husband getting some shopping done. My creativity is a bit hazy right now, so I had to lean on a more clear headed me. Last year I wrote this poem a couple weeks before Christmas...since we are putting up the tree tomorrow, I thought it would be a good one to re post. Hope everyone had a wonderful holiday with their families! Day 25 of National Health Blog Posting Month is officially complete!)

Thursday, November 24, 2011

Not easy, but so worth it.

Today I am Thankful that life isn't easy.

The struggles and challenges our family has faced lo these past 18 years have only made us more appreciative of the simple pleasures life grants us.

We have been thrown a few curveballs for sure, but instead of curling up in a ball and giving up, we drew together as a family and clung to our love, our faith and our blessings.

I look at my handsome husband and my four beautiful boys and am overcome with emotion. I am so blessed that they are ALIVE. That my children are not only surviving with diabetes, but thriving with diabetes. My husband not only survived the odds against cancer, he slayed them. We have rough days, heck yesterday is a perfect example of that...but if you move past those days and look at the big picture, we lead a blessed life in so many ways.

I make a lot of mistakes. I am far far far from perfect. But I have learned a hard lesson that has helped me more than anything in life...and that is I can't do this all on my own.

We can't bear the burden of this alone.

Turn to your spouse.

Turn to your family.

Turn to your friends.

Turn to the Diabetes Online Community.

Turn your sights upwards. If you feel like you are alone in all of this...you are not.

I know it with all my heart.

There is a purpose to this. Find it. Although it is hard to see when the sadness and helplessness cloud our view...the purpose is there.

And today I see that all of these challenges in my life...all the worry...all the constant constant worry...has helped me to appreciate the things that are right in front of me.

It took me awhile to learn to be happy with what I have. This might be as good as it gets, it is a waste to wait for something better.

And if this is as good as it gets, I realize that I have been blessed beyond anything I am deserved. Other than a cure, I can't imagine a more blessed life.

My husband, my boys and my family...they are all that I need. They are home. And today I want to recognize that regardless of the walls that diabetes puts up...we will go forward. We will find a way to climb over these walls...dig under these walls...go around these walls...and if need be, plow right through them.

We can do this. Making it this far has shown me that is true.

One day at a time, friends.

One blessing at a time.

Happy Thanksgiving to every one of you. Each of you are a blessing as you have lifted my burden. I'm not alone in Our Diabetic Life...how blessed am I to know this?

(This is me officially wrapping up day 24 of National Health Blogging Month in honor of Diabetes Awareness Month.)

Wednesday, November 23, 2011

No insulin is no fun.

It can all go so wrong so quickly.

B has been higher since school let out. Is it the different activity level? Should we be switching to his weekend ratios all week? I was so sick of it that I upped his basal for most of the day yesterday and he was still running "higher." 200's. Nothing alarming or anything.

He went to bed in the 200's and shockerprisingly enough...he was 220 when I tested him at 1am.

I corrected and went back to bed.

It was almost 4:00am when he woke me and told me he was throwing up. ("Don't worry" he says, "I didn't throw up on my bed...I can still sleep there. I made it to the carpet.") His blood sugar was 390 and his blood ketones 3.8. His set had been ripped off and was in one sorry state. The cannula was bent in half and the sticker was just a big ball.


We did a quick set change, gave a good sized bolus and went back to bed. For the hour before he threw up again I didn't sleep. All I could think about was that cannula.

Why can't the genius engineers of the world find a way to let us know the cannula is bent? I mean, isn't that important? Our children getting no insulin even for a little bit of time is dangerous. "No Delivery" is no help at all...most of our bent cannulas are found after a lot of research and problem solving beforehand. They will be high for hours before we yank out the set and discover that little culprit.

Maybe I'm asking for the world...but there has to be a way to alert us to a bent cannula. I have a friend that uses the metal ones, and they still have problems. Those metal ones can bend in half too. (Seriously, ouch!)

Watching your child retch in front of the toilet and turn his head to tell you that HE is sorry between hurls is heart breaking to say the least. "Why are you saying sorry honey? I'm sorry."

"It isn't your fault mom...I must have pulled it out when I was sleeping."

Heart. Rips. Out. Of. My. Chest.

I am not talented enough to convey my anger at this disease today. I sit here having my silent temper tantrum so the boys do not see. I have seen them suffer through an improportionate amount of ketone inducing "problems" the past few months. Am I getting soft? Am I letting them down?

I feel like I am.

I was getting a pedi with a friend, (my very first one, thankyouverymuch!) and she pointed out that I am always feeling guilty about something. Truer words have never been spoken.

I have a lot of responsibility and I don't feel like I can put 100% into any one thing. I think that is common with parents with diabetes, or any other disease or disorder for that matter. Seeing your child suffer and knowing that maybe, if you were more diligent their suffering would never have happened, or perhaps could have been lessened? Well, that is enough to put my swelly brain into a tailspin. Seriously...it is on the ground right now banging its hands on the carpet...with its legs flailing like a 2 year old.

I am thankful that most days this disease has nothing on us. But the some days that it takes over and changes the trajectory of our happiness...well on those days I'm typing through tears.

Luckily, tomorrow is a new day...Thanksgiving Day for that matter. This incident will seem far removed, and I'll be able to concentrate on the things that matter most in life...

My blessings.

Thankfully, there are many.

(This is day 23 of National Health Blog Posting Month, where I am posting every day in honor of Diabetes Awareness Month.)

Tuesday, November 22, 2011

A common thread

A small reenactment of a conversation that happens between L and I over the phone more often than you would guess:

"Hi L! What's your sugar?"

"I'm going to say it in Spanish, ok?"

"Ok, if you absolutely have to."

"Yup! I do! Dos... Unnnnnnnno... ummm... siet.... no.... seisss... no.... serte.... no...."

"L, please just say it in English."

"No I got it! Dooooooooos...un....uno....siete!"

"217?"

"NO! 206!"

Another small reenactment of L telling me his blood sugar number before he goes to bed:

"L, what is your sugar baby?"

"I'm going to show you how many with my fingers, ok?"

"Ok, if you absolutely have to."

"Yup! I do!"

Then he proceeds to put up one finger, wave it around and turn it into three fingers, wave it around and turn it into nine fingers...wait, now it is eight...wait...he is changing his mind...some fingers are halfway up...I don't know what he is doing. My brain is swelling!

"138?"

"Nope! Let me do it again!"

And he won't give up the answer...I have to guess correctly, that is the fun for him.

My last reenactment below takes place mostly in the early mornings:

"Good morning my love! What is your blood sugar?"

"I'm going to spell it out in the air, ok?"

"Ok, if you absolutely have to."

(You know he does.)

This is the hardest to identify. His hand swirls around the air in grand gestures and I must guess the numbers he is writing with his finger. Early in the morning my brain isn't awake enough to take all the random information in and make something of it, so I make him go one number at a time and guess from there. He usually has to give the number up to me, but not until I guess a good ten times.

I posted the last scenario on facebook yesterday and was shockerprised by the response. It seems that these things are universal to children who have diabetes. Children are seriously playing these exact same games with their parents around the world!

Why do they do it? Are they trying to make the most fun out of the least fun thing they have to do during the day? Are they trying to punish us for constantly asking, "What is your sugar?" Nah! It isn't revenge, right? I think it is all harmless. I try to wake up before the boys to check their sugars in the morning...just so I don't HAVE to ask them that question first thing...but L makes it a point to get up before I do and check his own sugar...just so he can play the game.

As much as these games swell up my brain...I always leave shaking my head with the biggest smile on my face. It is absurdly hilarious and brings L so much joy, how can I not play along?

In fact, as you are reading this there is probably a mother in Mexico asking her child what his blood sugar number is, and he is responding at this very moment, "Mama, voy a decliro en Ingles!"

It's a small world indeed!

(This is me wrapping up day 22 for National Health Blog Posting Month, in honor of Diabetes Awareness Month.)

Monday, November 21, 2011

Every Birthday a Blessing.


He still has scars on his inner ankles from when he was diagnosed at 8 months old, in fact he showed them to me yesterday. He was so dehydrated, the doctors had to cut there to find a vein. It is a memory etched in my brain for the eternities...and today I sit here feeling blessed beyond measure that he is here with us 14 birthdays later.

Last year I was very conflicted about J turning 13. I wasn't ready for another teen in the house, and I certainly didn't think I was ready to see J be catapulted into adulthood.

I'm glad to report that today J is 14 and we have both survived the first of his teenage years. He has changed so much, but I can't say it is for the worse. He is finally growing and has slimmed out again. His voice is in the constant state of cracking and he has a really quiet/hilarious sense of humor. His facial expressions are what he is all about these days and I find myself studying him so I don't miss them.

And he talks! I don't think I've heard J talk this much in the past 3 years combined.

He has found a balance between his responsibleness and his laziness. He is a teen for sure, but in a good way.

There have been instances when he missed an assignment. There have been instances where he missed a blood sugar check. Neither were blown off by me, because each are important and are not negotiable. Still, he has all A's and B's and a rockin A1C, all that were achieved mostly by his own efforts and not mine.

He is independent and has been making good choices.

What else can a proud mother ask for?

We have arrived. For the past few years you all have seen me freak out about J taking on independence in his diabetes. He is there. I have no idea what he bolused for dinner last night, but when I checked him at 1 am and saw a 129, I was impressed. L and B's weren't that good and I was responsible for their dinner carb counting. Who knows what the future holds, but for right now all is well!

For those of you that have tweens, or teens and are struggling, (which don't get me wrong from this post...we have struggled!) Below I have attached a link that has helped me more than anything put all this independence in perspective. I've found myself sharing it a handful of times in the last couple weeks, and I know that ALL of you...even those of you with littles, will benefit from this.

So click and enjoy! It is so worth sticking it through to the end!

And Happy Birthday J! Every birthday is a blessing. YOU are a blessing! We love you!

The link is HERE. Or you can copy and paste the below URL into your browser.

http://www.childrenwithdiabetes.com/video/JoeS2.htm

(This will wrap up day 21 of National Health Blogging Month, in which I am participating in honor of Diabetes Awareness Month.)

Sunday, November 20, 2011

100,000

I've been keeping track of how many people click on my blog for a little over two years now. Today I reached the milestone of 100,000 visitors.

To quote a post from earlier this year:

I like to think of my blog as my ark.

I was drowning, so one day I took my thoughts and built my ark/blog.

I filled the ark with my fears, my hopes, my belly laughs and musings from my swelly brain and let it sail!

It traveled father than I ever imagined, and has taken me to places I never knew existed.

The best place of all is the Diabetes Online Community. When I started this blog, I didn't even know the DOC existed. It was a happy coincidence my sister in law found another parent blogger and pointed me in her direction. Discovering Shamae's blog list was akin to finding the new world for me. I had found solid ground. I wasn't alone in the ark with my thoughts, like Noah's dove, I was able to set them free...and in turn, I could set myself free as well.


I want to take a minute to thank each and every one of you for taking the time to click on my link and see what I have to say. You have been my biggest support. Your being here means the world to me and has made all the difference in Our Diabetic Life. There is such power in knowing we are not alone, I had no idea of this when I started this journey. It is a comfort to me knowing that there are others like me out there saying, "same."

YOU make a difference in my life. Thank you. Thank you SO MUCH for that.

(This is day 20 of National Health Blogging Month where I am posting every single darn day for Diabetes Awareness Month. 10 days to go. Thank you for taking the ride with me!)

What Some Would Call Diabesity, I Call Diapression...

It's a blue Sunday today; a Sunday marked with gray Fall skies, transitioning into Winter blues. The trees are mostly, leafless, and it's long past the time when you could get away with taking an afternoon stroll outside with just a light sweater.  Looking out into the landscape, it's hard to image all this pervasively barren world will come right back to life next Spring.

Such can be the seasons of Diabetes.

There are moments when one feels invincible, unstoppable... committed more than anything in the world, and running full steam ahead.  And then there are the not so honest moments; the moments when one speaks to others, gently keeping behind the curtains the deep feelings of struggle bubbling within.

Depression, and other mental health concerns, are probably the most ignored symptoms of Diabetes.  Though, quite honestly, it is hard to call Depression a symptom when studies have shown that if you are predisposed to Diabetes, it really doesn't matter which one came first: if you had Depression first, it may very well lead to Diabetes; and if you had Diabetes first, it may very well lead to Depression (http://www.webmd.com/depression/news/20101122/new-links-seen-between-depression-and-diabetes).

Adding to the clinical predisposition for Depression is the heavy guilt burden being heaped upon patients by outsiders, and by what I would call an "Uneducated Doctor Epidemic", compounded with the "Lazy Researcher Virus," and exacerbated by the "Ratings Addicted Media Tsunami."

Seriously.

What comes of all of this is a perfect storm of judgement and derision toward people with Diabetes (indiscriminate of the type.) Not that the type should even matter; NO ONE gave themselves diabetes.  No one wants this disease.  But it's easier to mock overweight people; it's easier to blame them for disease, and economic burdens. Why else would they come up with such a thoughtless, hurtful, and insensitive term as "Diabesity?" Because it's much easier than having to self examine the health itself of our country...  Who wants to look at pollution, pesticides, HFCS, BPAs, FDA guidelines, Big Pharma medicine side effects, and COI within health guideline organizations, when there are fat people we can accuse of giving themselves a disease.  (Never mind that 33.3% of Americans are obese, but only 8.8% of Americans are diabetic, and that includes all types.) This leaves most diabetics, frazzled (to say the least), most of the time.

Now, Depression in itself, is a poorly understood, and stigma filled illness. I've had Depression since I was, at least, 12 years old and I can't tell you the number of times people have advised me to just look on the sunny side of life, to accept Jesus, or to just shut up and 'deal with it.' Many people really can't tell the difference between the occasional bout of sadness, and clinical Depression... and just like with Diabetes, few medical professionals are equipped with the tender understanding required to help a patient overcome and manage Depression, or monitor a diabetic patient for symptoms of Depression. What's worse, many people think Depression is a made up, modern era disease, in which people just lack will power... the same lack of will power that led them to be overweight (or eat poor food), and give themselves Diabetes. (Even if these statements are far, far from the truth.)

Even without clinical Depression, Diabetes, in itself, can be depressing for many reasons...


  • It's just a frightening disease, with many complications and dangers -- some immediate, and some compounded over time. 
  • We have to work HARD to be healthy, without any apparent 'reward.' Most people I know struggle, as it is, when the rewards are very evident (like weight loss, or muscle building, or training for some sporting event)... When people have to work hard at something, every day, so they can avoid 'unknown', 'random' complications they CAN'T SEE happening to their bodies, or won't know about for many years to come... it's like trying to hit a piñata in a pitch black room, with a 6 inch ruler. There aren't many immediately gratifying rewards in this game... And if you do ever get that piñata, you still have to mind that candy. 
  • Some folks work incredibly hard, and they STILL develop complications. Sometimes our genetics are the damning factor in whether or not we develop a bad complication, and this is apparent in folks who aren't even diabetic, and develop many of the complications some diabetics might get, like neuropathy. 
  • Folks who develop complications, often go their medical professionals only to be treated with judgement, and contempt -- told they weren't compliant, and did this to themselves. Type 2 Diabetic patients often get little support from the medical community, are given little to no education, and little to NO tools (such as test strips to monitor their numbers), and then expected to have tight control. 
  • Family and friends are often NOT understanding, and judge from the outside, looking in: they may think life changes should be easy enough (because they're not 'rocket science,' right? -- except, they CAN be lol) and shouldn't burden the patient... yet I can't tell you the number of diabetics (particularly women with diabetes) who end up making two sets of meals, three times a day, because the rest of their family doesn't want to change their eating habits, as well. Diabetics NEED a supportive environment, and supportive families, and CHANGE AS A WHOLE, in order to thrive. 
  • It just gets old.  Get up, test your blood sugar, take pills... wait... wait... wait... test, take pills, count carbs, eat, test... exercise, test... test, take pills, count carbs, eat, test, exercise, test... test, take pills, count carbs, eat, test, exercise, test... test... take pills, count carbs, eat, test... Can you keep track of it? Can you do this every day, for the rest of your life? For once I'd like to SLEEP IN, or eat without thinking so much! Can you schedule bathroom breaks in between, for the side effects? Can you schedule exercise breaks, in between work, when you're not at home? Can you plan snacks to stuff in your pockets so you won't go low at work? Remember to pack your lunches, every day, for work, and always get up early enough to eat breakfast, and always pack your own meals and drinks when you go to get-togethers because no one bothers to think of diabetics or those with health needs? Can you remember to schedule all the doctor appointments for your routine care? The eye doctor, the foot doctor, the A1C, the yearly physical, the CDE? Can you remember to have enough strips and snacks when you go outdoors? CHANGE YOUR LANCET. Can you still spare an extra 20 minutes to talk to the idiot who just said you shouldn't eat that candy in your pocket for your lows, or it will give you Diabetes? Are you tired, and annoyed yet? Because let me tell you, it's not fun to be the fat gal at work, with candy in her pocket, because her Polycystic Ovarian Syndrome gives her hypoglycemia, and she unloads trucks for a living, but she has Diabetes... So everyone else needs to have a say in that. And oh, yes, all throughout your day... remember to drink enough water. :) Lots of water. heh Or you'll go high from dehydration.  FUN.

I don't really think we realize just what we're doing to persons with Diabetes.  We worry so much about about an obesity epidemic, but instead we're creating a Depression epidemic in more ways than one. We are creating an epidemic of people who want to die, in silence, from shame, rather than talk about their Diabetes, or openly care for it.  An epidemic of bullied children, and young Diabetic girls with eating disorders. If we have enough courage to not judge someone who just got infected with the HIV virus, whether it was their fault or not, why would we not have enough courage to not judge someone who just got diagnosed with Diabetes? Diabetes kills more people than Aids and Breast Cancer COMBINED.

Diabetic patients need well rounded, overall care, and mental health services to help cope with this chronic, life long condition. Diabetics need support; not judgement.

If you are depressed today, friend... Understand that Winter doesn't last forever.  Just like your trees, plants, shrubs, and lawn, may require some tender, Winter loving care... So do you.  Be KIND to yourself. It is OKAY to feel the way you do.  I feel it, too.  

It seems like the end of the world out there, in your heart and mind, but it is not.  I GET IT.  You want the roller coaster to stop...  If you are struggling today, with Depression, hiding behind society fabricated shame is not the answer; please, open up. Talk to your doctor, or find a new doctor.  Find a Diabetes support group in your area, or online... Leave unsupportive environments, and judgmental people (even if they themselves have Diabetes.) Do NOT go down into that Wintery scene...   You can do this, and I'm no different than you... Spring is just around the corner. Let yourself bloom. 






Saturday, November 19, 2011

Oh yeah...he can eat that!

What do you do when your little boy's dream is to have a pie eating contest at his tenth birthday party? Your little boy who has been obsessed with the word "pie" since he was four years old... Your little boy who's announced his favorite food is pie since he could form an answer... Your little boy who has Type 1 Diabetes and for one moment wants to be like any other normal kid out there...

What does one do?

Well, one boluses this boy 120 carbs and lets him have at it.









Best. Party. Ever.

Let them eat cake!...errrr...pie!

(This is me coming in right under the wire with my post for National Health Blogging Month in honor of Diabetes Awareness Month. I didn't post the pic of the other boys present as I don't have their parents permission...but take it from me, adorable! And in case you are wondering, he blew the other boys out of the water. B won by a landslide!)

Friday, November 18, 2011

Choices.

They are our god given right. We all have the opportunity to make thousands of our own choices every day. Are they all choices of good and evil? No. In fact most of the choices we make are not black or white...they are no color at all. Choices can be as simple as what we are going to eat for breakfast or what toothpaste we are going to buy.

Some of the choices we make are more important. One example might be looking both ways when we cross the street, another might be wearing our seat belt.

As a mother of 3 children with diabetes, I make hundreds of choices for my boys on a daily basis. I know what the healthy/smarter decisions are. I tell them what snacks to eat...I tell them if they can or they can't. I tell them how many carbs to give. I'm REALLY good at making choices for them. So good that I'm afraid I'm not letting them feel the power of making good choices for themselves.

I had the opportunity tonight to listen to a few amazing woman, and during the conference this epiphany came very clearly:

My greatest job isn't to make all the choices for my boys. My greatest job is teaching them that making good choices will bring them good health and happiness now, and down the road. It is my job to teach them how to do that.

Instead of me telling them what healthy snack to eat after school, I should let them choose, and then talk to them about it. Explain the glycemic index. Explain why one snack would be better than the other. They are old enough now that I should be guiding them...not controlling or smothering them. They need their mother to give them enough room to make mistakes. Because we learn from our mistakes.

I need to be strong enough to watch them make choices that I wouldn't. I need to be brave enough to let them fly. It is so easy for me to say, "Don't look over there! Those choices will hurt you! You only have ONE good choice and it is here...the others aren't even an option!"

But in the real world it doesn't work that way, and my shielding them from things isn't the best training for the rest of their life.

All I can do is talk to them...be brutally honest with them...teach them...and trust them that they will make choices that will end up being responsible ones.

Good choices:

Like bolusing before they eat.

Like putting strips into their backpack before school.

Like picking the right snack for a 50, a 60 or a 70.

Like eating one cupcake and not two.

Like listening to the alarms on their pumps.

Like rechecking their sugars 15 minutes after treating a low, to make sure all is well.

I can do all of this FOR them...but it is better to guide them. To encourage them. To find ways to help them remember, and help them understand that I'm not going to be there to make these choices for them forever.

My first instinct is to protect them and keep them safe. That is my job for sure. But I need to start giving them more power in their choices.

Because once they start making good choices on their own, I'll be more inclined to reward them with things like freedom...

And isn't that every child's ultimate goal? Freedom to go to their friends without mom calling every 10 minutes. Freedom to go on a field trip without mom sitting next to them the whole time. Freedom to...I don't know...leave for college????

If I make all the choices for them then they will not learn anything. I'm going to do it all in baby steps, in things related to diabetes and things that are not. Somehow I got J to be independent in his diabetes...so I know I CAN let them take over.

Sometimes though...for me, it really needs to be a conscious decision.

And right now I'm choosing to let them choose more often. (Not completely though...I'm not mental!)

(This wraps up day 18 in a fancy bow. I'm blogging every day this month for National Health Blog Posting Month in honor of Diabetes Awareness Month. Bless you for putting up with me!)

Thursday, November 17, 2011

My October is a bully.

To my long time readers it is no secret that October is my least "favoritest" month.

Yes, Halloween has something to do with it. But mostly it is everything that is tagged along with it. It is the constant parties, costume changes, treats, trips and the bags and bags of candy.

Last year I had enough and told the boys, no parties. Only Halloween...and no kidding, it was the best year ever!

(For me anyway.)

This year I let them pick one extra party, and that was the school party. It didn't brighten my month or anything...there was a bake sale and a cinnamon pancake breakfast. But they had fun and that is what matters.

If it was just these two parties that made up the complications of October than I would be sitting pretty. But it's so much more involved than that. It is the accumulation of everything chaotic...too many straws on the camel's back...it only takes one of those straws to make everything fall apart.

The older boys have report cards come in the mail the first Friday in October, and then the next grading period ends the last Friday in October. There is a lot of pressure to get them into the swing of their new year.

B and L had EIGHT field trips in the month of October, plus an additional three walking field trips to the high school track. This isn't normal, right?

Never mind that October seems to be the boys preferred month to have a growth spurt. I changed basals on each and every boy at least twice in October.

And then there is the normal everyday stuff, like the 750 times the boys sugars were checked. 750! That isn't a made up number! 8 times a day, times 31 days, times 3 is 748. And there was the day B had ketones, so yeah...OVER 750.

And the 30 set changes is something to be noted as well.

Why does October get to me? It is because I already live a life that is demanding on my psyche. Adding things to the list, piling on responsibilities, things to remember and WORRIES on my swelly brain makes my cogs overheat.

8 field trips. Are you hearing the words that are coming out of my screen? One time L and B had field trips on the same day and I had to let B go to Safari West without me. There is no cell signal at Safari West by the way. So I spent the day in silent freak out mode. I don't have good hair days when I'm in silent freak out mode. My lower back hurts when I am in silent freak out mode. I am not a fan of silent freak out mode...but yet October seemed to be littered with these episodes.

If you are not my friend on facebook than you wouldn't know about J's run in with an electric hedge clipper. He was lucky that he didn't lose his finger. It was grizzly to say the least. There wasn't enough skin to sew up so they left it all meaty for the skin to grow back. It has been a month and I can only now look at it without feeling woozy. TMI? Hey, if you want to understand what it was about October...you gots to hears it all friends!

Sure, it wasn't all bad. There were a lot of family dinners, L learned how to ride a bike...which was a total epic experience on its own...we went on a record number of family walks and the weather was so sublime the heater was never turned on.

Just a lot of the same ol same ol too...

Chaos.

Which is just fine. But there is something about October that makes me really dislike...well, October. I get blue in October...I get completely overwhelmed...and I don't like feeling that way.

I'm not looking for, "Poor Meri." Although at the surface it may seem this way. I'm just trying to wrap my head around why October and I must participate in this sparing match each and every year.

I mean, November and I get along great. And December and I are seriously BFF's.

Maybe I do it to myself.

Maybe.

But I have a feeling October doesn't like me either. It almost feels like on November 1st, October yelled at me, "Don't let the door hit you on the way out!" It spends its 31 days trying to trip me up as often as it can, and I'm pretty sure there is some name calling in there because I always feel bad about myself during that time of year.

I guess I just need to come to terms with the fact that October and I will never get along...which would be easier to do if I didn't want it to like me so much.

My October is kinda' a bully...but I hear other people have very nice Octobers. So maybe it is all just the luck of the draw.

(This marks day 17 of my participation in National Health Blog Posting Month, in honor of Diabetes Awareness Month.)

Wednesday, November 16, 2011

On the Eve of my Diabetes Anniversary...



Some days...
I think it's all a dream.
A bad dream, 
a long dream;
One of those sweaty kind of dreams.

I call out for you,
and you're not there. 
I dial your number...
But you will never be there.

Never again...
To answer, 
to offer advise;
Or to just tell me you love me,
One more time.

I ponder the roads you traveled,
the judgments I made,
the anger I felt, 
and I am SO SORRY, 
DAD...

It's hard to know,
hard to weigh, 
hard to feel...
Until the burden is yours.

Tomorrow marks
my second year of life
with Diabetes, 
and I truly wish you were here... 
I wish I could say everything is so much better,
and in many ways it is.

New insulin, 
new technologies, 
new hope for all...
But always we must watch now,
 for miracle cure hawkers galore.

Dad, how I wish...
People understood.

How dangerous 
Type 2 Diabetes is, 
and that it has NO CURE.

We must fight, 
every day... 
For tight control,
for proper medical care, 
for enough test strips, 
for medicines and insulin...

But still, every day,
someone's pretending
we could easily 'reverse' this...
Like the bad numbers,
are somehow,
not one slice of pizza away.
It takes nerves of steal,
and iron will, 
to keep away... 
from those cupcakes.

Carbohydrates are everywhere,
in everything, 
even in medicine,
even in flu shots...

This is not a race, 
a sprint, 
or a short pass at the gym...
It's a marathon...
A long, 
and never ending...
Marathon.

Dear Dad... 
I know you worked hard,
I know you measured,
Tested,
and took your shots...

I know you had a lot of will...
Determination, 
Strength of character,
and yes,
sometimes depression.

I pray that,
on this new year...
I can climb that ladder...
YOUR ladder, 
and continue the fight,
Your fight, Our fight,
For you... For me,
and for everyone.







L-M-N-O PEE...

It's something none of us want to talk about. It is the one post I probably will get the most flack about when the boys are older, but darn it! It needs to get out in the open! We must unite in our secret shame...

Pee.

And diabetes.

Man, back in the day when my boys were littler and high over night...forget about it!! Accidents galore.

And let's not get into the nights when it happened twice. I've found them curled up in the corner of their bed the size of a quarter to keep away from the wet spots.

And then there is the bathroom.

I have four boys. Seriously, sometimes I think there is a fountain of pee that springs up next to the toilet at night. Yesterday I honestly walked by the bathroom door and gagged a little.

Almost every day. I have to clean it almost every day.

Now...let me be clear. I've never BLAMED the boys.

When they have to go at night, I'd rather they make it to the bathroom blurry eyed and in a sleep trance than not make the trip at all and stay where they sleep. I know they are out of it. I know they are trying. I know it is hard to aim when you are sleep walking.

But honestly...it has been a big part of my life that I need to get out there.

PEE!

There! I said it!

I don't want to embarrass my boys...ok, maybe too late for that...but it took them a couple years after the initial potty training to keep them dry at night too.

Why?

Because they are boys?

Because they have diabetes!!!?

Because the sleep harder than normal people?

Because. They. Have. Diabetes!!!

I can't say 100% for sure...but I can tell you what a relief it was when my youngest announced a couple years ago, "I'm done with these nighttime things. I can do it!"

And he was done.

And he did...for the most part.

I just want you to know if you are knee deep in laundry...you are not alone.

Children with diabetes pee more. It is a scientific fact. It is not their fault...also a scientific fact.

And yup¸ we've always restricted drinks after 7, and had them "go" before bed and at the 10pm check.

It is what it is.

As they get older the incidents are fewer and far between. My T1 teen doesn't have accidents ever, in fact it seems like years and years since he has. (PHEW! I saved one kid from holding this over my head forever.) It is true though. So I know there is a light at the end of the tunnel for all of us.

It just feels like a really long tunnel, you know?

Like one of those Subway tunnels...that smells like urine.

Ok. I'm done.

(This so "eloquently" ends day 16 of National Health Blog Posting Month, where I am blogging everyday in honor of Diabetes Awareness Month.)

Tuesday, November 15, 2011

The life cycle of a test strip.

I've been observing closely the life of a test strip for many years now. They lead a fascinating existence...inspiring in fact...and as such, I hope you will see their valor in my findings today.

They are born into groups of 25 and live in the dark for months before their true life begins. It is a drastic change from the quiet of their family as one day they are ripped from their cocoon and thrust into a world of people and noise and emotion.

They watch their brothers and sisters be taken one by one to be eaten by the monitor and they gasp at what they think is their bloody end.

Alas, for many it IS their end. Test strips are only good to us humans ONE TIME. After we apply the blood and read the number proceeding the countdown, they are completely useless to us. They are thrown into the garbage and they will sadly live the remainder of their days at the dump.

But for a resourceful some...this is not the case.

Some of these strips have a will to live that is stronger than the forces of human nature. They find ways to survive and as a result they can be found in the most outlandish of places.

Some dive to the floor where they hope they will be ignored, and eventually be able to quietly escape.

Some find their way into pockets...which in turn find their way into the washing machine. They clog up the washer filter and congregate with other family members hoping never to be discovered. But, a little water on the laundry room floor alerts the humans to their presence and they are most certainly found out and thrown away to their garbagy grave.

Some find their way to the car. They can live happily there for months until they are vacuumed up. Ironically they are happy to be with their own kind within the vacuum canister...until...like the rest, they are eventually thrown away.

Some live for years in the corner of a closet, or the bottom of a dresser, or underneath a bed. I'm still studying how they get there...but there is some kind of instinct they have to find a dark, quiet place to hide. They are rarely found alone, so my research suggests that they prefer to hide in packs.

The most popular colony by far in our house is the one that lives in my purse. They live contently there with hundreds of their sisters and brethren. They thrive in the deep dark recesses of my purse pockets. Between you and me, I believe they populate there too. Unfortunately, their offspring are 'used' test strips too, and as such, are no use to me.

And then there are the heroes. The few that go where no strip has gone before. Once, one was found in my hair. Another one was seen swimming in the toilet, and another two somehow made it to the gutter by the mailbox. A brave few have found the courage to base jump out of my car into the parking lot, and an especially bold one was found inside my bra in the summer of '99.

It isn't an easy life for a test strip, but those suckers are resourceful. They can be truly annoying at times, but you have to give them props for their ingenuity.

Unfortunately though, no matter how smart or resourceful they are...they ALL end up in the garbage eventually.

It is a sad life, but one I would like to honor today.

I would like to thank each and every test strip that gave up their quiet life in the vial so that my sons may live. There must have been over 100,000 so far, and their sacrifices are appreciated more than they will ever know. So to pay homage to their short life spans, I will put off cleaning out my purse another week...and maybe wait until Saturday to vacuum out the car.

It is the only human thing to do.

Rock on test strips. Rock on.

(This is day 15 of my 30 days straight of blogging for National Health Blog Posting Month, in honor of Diabetes Awareness Month.)

Monday, November 14, 2011

Sometimes...

Sometimes at night, when the alarm goes off…I have a mini fit. I thrash my legs and moan like an 8 year old tasked to do the stupidest of chores. I am overcome with exhaustion. I roll out of bed walking back-bent-arms-hanging, channeling all my anger to the Legos on the floor, wondering when, if ever, I will get a good night’s sleep. Once I get to the boys though, my heart usually softens. Their sweet faces calm my shaking hands and my selfishness turns to concern as I check each boy and assess their situation. But when I get back to my bed, I fall in like a dead body; face first…KERPLAT…on to my pillow. Wondering if I’ll be able to fall back to sleep, angry at the exhaustion that has taken over my body. Sometimes.

But most of the time, I just hop out of bed and check. No biggie. I’m not angry, or tired, or anything. I do the deed and go back to bed. Most of the time it is just a simple correction or a little banana or pudding to get things back to where they need to be. I climb back into bed and fall asleep before my head hits the pillow. Done and done.

Sometimes I question myself. I’ll give the boys breakfast insulin and send them to school wondering if they will be ok today. Because sometimes I don’t do what the pump tells me to do. Sometimes I go rogue. I know that J has track, so I’ll scale back his insulin. I know that B has called me the last few days with higher numbers, so I give him a bit extra. I know that L has needed an extra snack for a week, so I give him less insulin. So I’m guessing. And sometimes when I guess…my entire body fills with worry sand, and I feel like I am 200 pounds heavier. On these days I feel clumsier in both mind and body, and I can’t think straight. And I pretend that I’m not worrying…I tell myself over and over and over that they will be ok. Sometimes.

But most of the time, I give insulin and I don’t worry. We have done this everyday for forever, and everything will be ok. And if it is not ok, then there was nothing more I could do. Most of the time I am at peace with my decisions. I know that my guesses are educated guesses. I live and breathe diabetes. I am not perfect…but I am capable. Most of the time. Done and done.

Sometimes, I’ll look at a pile of bloody test strips on the dresser, (aftermath from a long night,) and I get sick to my stomach. It is the grizzly reality of our life. Sometimes, there can be 20 test strips lying on the boy’s dresser from the evening before and a couple checks through the night. I pick each one up to throw in the garbage. It hurts my heart as some of them stick to the dresser. Tears come as I wonder if this will always be our reality. Wondering if there will ever be a cure. The image throws me…and validates all my anger towards this disease. I think of their callused fingers and I want to roar like a mother lion that is protecting her young. Sometimes.

But most of the time, I’ll clean up the strips and disinfect the area like I always do and it is the most normal of things. It is not big deal. Test strips are nothing new. Heck…they are EVERYWHERE. Normally the strips go straight to the garbage or in a cup I keep next to their supplies. I am thankful for being able to test. This instrument is fairly new in this world. How blessed am I to know what to do at any time of day just with a poke of the finger? I thank the Lord for that monitor. Most of the time. Done and done.

Sometimes I let my brain go to that dark place. The place where the seriousness of this disease is magnified and made uber clear to every one of my mommy senses. Sometimes, like this week, I hear the stories of children dying in their sleep from Diabetes and I have what I call, “a silent freak out.” I don’t talk about it. I pretend I am not worrying about it. But it is there in my mind. So when something else comes up that is frustrating, I lose it. I lose it over the littlest of things. Not because of the little thing, but because of this secret worry that has burrowed like a mole deep into my head and is planning to hibernate there for the winter. There is this background worry that affects every aspect of my life. It defines me, it puts me on edge. And at these times, I hate diabetes. Sometimes.

But most of the time, I am grateful. I see the blessings right in front of me. They are vibrant, smart, and amazing. They can do anything. Nothing can stop them from achieving their dreams…not even diabetes. I am grateful that they are alive…that they don’t live their lives in a hospital. That diabetes has made them stronger, more empathetic people. What doesn’t kill us makes us stronger. We are a close, united family partly to do with diabetes. We are blessed daily with technology that makes this disease manageable. We are a family that loves each other, and when it all comes down to it…isn’t that all that is important?

Yes, sometimes I am an emotional wreck. Thankfully, most of the time…I am Ok. That is why I am the Jekyll and Hyde of the blogging world. One minute I am preaching how manageable diabetes is, and that it gets easier, and that newly diagnosed families will adjust to the craziness of it all…and the next minute I am heartbroken…scared and unsure of myself.

I had a friend tell me once that I need therapy. That may be so. But I think for now, I won’t take that path simply because “most of the time” I’m still Ok. And the “sometimes” that I am not…well…those times don’t last long. Those sometimes moments are the reality of what this disease dishes out. Diabetes isn’t going anywhere anytime soon. I accept that. And I always know that that through the rain clouds the sun is always there. We just need to be patient…the sun will make itself known eventually. Sure, some storms last longer than others. But that is with every aspect of life.

When we were new to this life…when J was just a baby… things were different. The bad times seemed like they were most of the time. And it seems that only sometimes we got a taste of what was “normal.” As time passed…the two switched places. I often tell newly diagnosed families that things will get easier. It's too bad that easier doesn’t mean easy…but it does mean life will be better than it is now. So much better that you will feel normal again. You WILL feel alive again.

I get that normalcy most of the time.

And the sometimes that I don't...well, I blog. And it makes me feel better. :)

(This is a repost from a couple years ago, posted as day 14 on World Diabetes Day for National Blog Posting Month in honor of National Diabetes Awareness Month.)

Sunday, November 13, 2011

I support the circle!

The diabetes community is as diverse as it gets. We are different people with different circumstances fighting the same stereotypes about diabetes every day.

Type 1...Type 2...the world does not know. What MOST of the world thinks it "knows" is that diabetes is a bunch of fat people that need to lose weight.

They don't know that Type 1 is an autoimmune disease. They don't know that my children didn't get diabetes from eating too much sugar. They don't know that not all Type 2 Diabetics can go off medication by losing weight.

The world is surprisingly in the dark. Even the medical community doesn't have their knowledge all together. They don't know the seriousness of it all. Not only do fingers bleed with constant finger sticks...but parents hearts bleed watching it all.

We are a small community with a big voice that isn't being heard. We are like the Who's Down in Whoville. We scream at the top of our lungs, "We are here! We are here! We are here!"

But the world is too busy to listen. If diabetes doesn't affect them or someone they care about, it is hard to get them to open their ears enough to hear our message.

Like the Who's...every one of our voices count. And if we band together the world WILL listen.

In order to do this we need something to unify us. That is why I support the Blue Circle Campaign. The blue circle is already being used by the International Diabetes Federation. It is the symbol of World Diabetes Day. I agree that JDRF and the ADA, and every other foundation that supports the diabetes cause should incorporate the blue circle...somehow...in their mastheads.


Like the pink ribbon, the blue circle would be more meaningful if we could get the world to recognize what it means. Our voices are stronger together, so I urge you to click the link below and sign the petition to make the blue circle the universal symbol for our cause.

Your signature could make all the difference...

Please click HERE.



(This concludes day 13 of my blogging every day in honor of National Health Blog Posting Month, in honor of Diabetes Awareness Month.)

Saturday, November 12, 2011

The number's black magic.

He is a magician. Freakishly tall, sleek and smooth. He has that wry smile that makes us feel little. He has power...control...a regalness to his gait.

He cowers over us swirling his wand in the air, making the numbers dance in dark clouds around our head. They are dizzying. Captivating. All encompassing. We shirk in powerlessness...we get overwhelmed.

It is hard to function in such a state. We let the numbers rule. We let them control our actions.

I can see the image so vividly in my head and it makes me so angry. He sickens me.

And yet I let him get the upper hand sometimes. I GIVE him the pleasure of my miserableness and bow to his evil ways.

It is just wrong.

I need to fight it.

WE need to fight it.

We may need to physically take our own hands and turn our own heads away from the numbers. We may need to consciously walk away from them. I think sometimes it just needs to be that deliberate.

Sometimes we are fortunate enough to wake up to a sunny day and be able to see vividly the blessings and the meaning of this life in front of us...but honestly most days it takes effort to make the most of it all.

It is so easy to be hypnotized by diabetes. It is so easy to give in to the swirling numbers and to live our life by fear.

But fear never moves us forward. NEVER.

There is a quote: “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.”

Fear will always be there...but the knowledge that our children are more important is paramount.

If we let the fear control us, our children will certainly follow our lead. We need to find a way to break the spell of the magician. We need to find a way to make the numbers stay on the meters rather than swirling around our being, constantly obstructing our view to the "real" important things in life.

Because as it turns out, the magicians aren't real.


They are all smoke and mirrors. They make us feel like helplessness is our reality...but it isn't. We have the control to take one number at a time and fix it.

And then move on to the next.

We need to take that step away from it and let our kids be kids. They only have one childhood...one chance at navigating the teenage years. If we don't let them make mistakes, how will they ever learn anything?

I'm physically and metaphorically lifting my head up right this moment. I'm taking it all in, and dismissing the number's black magic.

It is the only way.

(I want to thank my dear friend Raisa for inspiring this post. I was blessed to watch her express her feelings about numbers and her diabetic life through dance. The performance made me think, and brought my complex emotions to the surface. This will wrap up day 12 of National Health Blog Posting Month in honor of Diabetes Awareness Month.)

 
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