Monday, June 25, 2012

Waiting to turn the corner.

There is something I need to get off my chest.

We're having a hard time.

Cancer is a big pain in the bahookie.  It is worrisome and hard and no fun at all.  Even the good news doesn't feel so great.  When you are caught up in the fog of misery and worry it is easy to become blinded to the beauty and joy all around.

I realized I haven't been updating about Ryan here on the blog.  All my updates have been on Facebook...HERE.

The good news is all of Ryan's tumors in his chest and abdominal area have shrunk 30-50%.  Winning!

But those pesky brain tumors are giving us a run for our money.  First he had whole brain radiation.  The results of that yielded two tumors that grew.  So Ryan headed back in for some specialized radiation for the two largest tumors worked!  Winning again!

But then they found another tumor.

Two steps forward, one step back.

We are zapping the new tumor this week.  Every round of radiation requires a flurry of appointments, scans, masks and so forth.  Throw in Ryan's exhaustion and his new constant nausea and things have been pretty craptastic.

I'm trying to see past the obstacles.   I'm trying to look around the corner and see the better times that I know are coming.

I'm really trying.

Last night when I was in bed I remembered I wrote a post about this once.  I dug it up.  Funny how much writing helps ME.  I hope it helps others, but really, sorting out all the junk in my brain makes all the difference. 

This repost is for me.  (And you...if it's something you needed to hear too.)

Challenges, and their infinite perspective

It's been a rough month.  It's funny how things run in waves.

Rough times, problems, challenges...they can throw off our perspective.

And perspective is such a tricky thing.

When we go through hard times, the problem sits directly in front of us. We all know if you put something right in front of your eye, or your face, like an orb for instance, it will block out all the other scenery. The orb/problem takes up your entire view and let's face it, it can be quite depressing.

Worse than we try to see further off in the distance, past the problem...all we see is the same thing...magnified infinitely. The orbs/challenges take over our perspective now...and our perspective of the future.

I call it the infinite perspective. Here is a crude drawing of my take on this:

When problems arise, tunnel vision takes over. Our problems take over every aspect of our lives, and the future seems to hold no change. We look straight ahead of us and see "same." We can't see any change for the better. It is impossibly infuriating.

But here is the thing. Life doesn't take us in a straight line.

Looking straight in front of us, trying to imagine a future amongst our challenges is fruitless, as life hands us multiple twists and turns. There are corners to turn all down our line of sight...they just aren't visible past the orbs.

Challenges are not infinite.

Life changes.

We turn...and one perspective is gone. When we turn, In front of us is a new perspective...and a new horizon is born.

The problem remains do we turn the corner to change the crappy perspective that may be in front of us right now?

Sometimes we can WILL a change. But unfortunately, sometimes life has a way of making us wait for that turn in the road. Sometimes we are forced on the hard road, looking our challenges square in the eye, for months...or even years.

I think our strength lies in expecting that eventual turn. HOPING for change is one of our biggest assets.

HOPE is huge. A lot of people get caught on the fact that hope is out of our hands. "I hope tomorrow is better." "I hope I get that package today." "I hope my husband will surprise me with a night out."

But real hope doesn't work that way...Hope is an active word. It is actively expecting change. It is actively expecting a better day. It is even actively working for a better day. It is knowing that the orb in front of us will not be there forever. Life changes. Perspectives can change with the winds, and the importance lies in not letting the problems in front of us make us give up hope on tomorrow.

Because tomorrow that turn can come.

Bad days...or months...or not last forever.

Your child's basal rates will not be wonky forever.

One day YOU WILL bolus correctly for pizza.

One day the pump will be oked by your insurance.

One day you won't have to weigh every ounce of food, you WILL swag.

One day your child's numbers will smooth overnight.

One day you will conquer after breakfast highs.

One day you will trust your child's sets again.

One will feel at peace with all this.

One day Ryan won't have cancer.

One day.

Maybe not today....maybe not tomorrow...

But we can't let the problems we are facing now...magnify to forever.

And we can't let the challenges we face seem insurmountable just because they look huge sitting right in front of our face. The fact is, they are usually not as giant as they seem...or maybe not as forever as they seem.

Yes, enduring is part of life, but the things that weigh heavy on our hearts now...won't weigh there forever.

Even if there is never a cure for Type 1, we will turn the corner one day and see all of this in a different light.

Hope for that change.

Expect it.

It will come.

Monday, June 18, 2012

That moment...

We all have our moments.  But I think we can all agree that in our community we often have moments we can collectively throw our hands in the air to and say, "Oh hell yeah!" to.

We share in the daily grind.  The moments that we bond over don't need to be life threatening.  They don't need to be life altering.  They are the small moments we experience in our day to day that mold us into one family.

Over the past week most of my "moments" have revolved around our endocrinologist appointment.  We haven't seen our endo since November, and the boys just got out of school for summer, so ALL the boys needed an overhaul...badly. 

Here are my moments...are they familiar to any of you?  Bueller?  Bueller?

That moment when you know you have an endo appointment coming in a few days so you refuse your children anything that will spike their blood sugar.

That moment when you realize the endo is tomorrow and you wonder if you can get on the redeye to China cheap.

That moment when you about to leave for the endo and try to guess everyone's A1C's...and you guess really high just so you'll feel better when the truth is revealed.

That moment when you are on the way to the endo and you hold your breath through the tunnel and wish for shockaprisingly awesome A1C's.

That moment when you realize you're going to be a few minutes late to your appointment and you secretly hope they turn you away, even though you know they would make you stay even if you were an hour late.

That moment when your 8 year old decides he is going to pee in the cup BY HIMSELF for the first time.

That moment when you measure your height and your 14 year old son's height and realize he is literally ONE HAIR taller than you.

That moment when you look in the nutritionists eyes and swear you have had brussel sprouts every day the week before.

That moment when the nutritionist leaves the room and your son gets on her chair and does an impression of her that deserves its own HBO special.  "Hello, I love brussel sprouts.  I eat them for dessert.  I have broccoli lollipops!" 

That moment when the social worker pops her head in and says, "You don't need me, right?" And you are thankful that you really don't...because many times you did and you said no.

That moment when you realize you don't suck as much as you think you do.

That moment the endo makes a change and you are like..."YEAH!  Exactly!  I knew that was what needed to be done, duh!"  And you wish you would have had that epiphany on your own the week before.

That moment when you see the first A1C pop up on the machine and you think the machine is broken.

That moment when you see the second A1C pop up on the machine and you are sure it is broken.

That moment when you see the third A1C pop up on the machine and you swear you'll take it to your grave that the machine is broken because they are all amazingly beautiful.

That moment when you leave the endo office and the sun hits your eyes and blinds you because you feel like you've been living under a rock for the past week worrying about the endo appointment.

That moment when you look at your sister in law and realize how lucky you are that she offered to come along even though you said you didn't need her to, but really really needed her to.

That moment when you go through the tunnel on the way home and think, "HOT DANG! This tunnel really works!"

That moment when you decide everyone gets shakes for dessert because you really think you deserve one.

That moment you realize you rocked the bolus on dinner AND the shakes and you let yourself think for one fleeting moment that the A1C machine wasn't really broken.

That moment when it is a week after the appointment and you see that all the endo's changes were spot on and your life is so much easier.

That moment when you look at your husband sleeping on the couch and realize you are worrying about all the wrong things. 

That moment when you realize how lucky you are to have every one of your children and husband home, and alive and smiling.

That moment when you know that this diabetic life sucks oranges...but it is YOUR diabetic life and YOU ARE FREAKING DOING THIS!

The moment when you are done talking about THOSE moments and realize you want to talk about this moment...right now.  Because in this know you're not alone, and that makes all the difference.

But then that awkward moment when you aren't sure how to end a post so you just end it abruptly and hope no one notices...

Friday, June 15, 2012

Happy Brithday You Can Do This Project!

One year ago today the You Can Do This Project began.

It was Kim's dream to bring people with diabetes together in a way that is relatable, and inspiring.  Letting people know they are not alone is huge!  And today, I hope you'll join me by saying Happy Birthday to the project that has grown by leaps and bounds this past year!

If you sift through the videos you will see familiar blogging faces and even some familiar famous faces.  You'll see parents just like you, who have struggles just like you.  You'll see how people failed, and people succeeded and you'll know there is an army of warriors who live life in time increments, just like you.

I was privileged to be part of the original unveiling video.  I've embedded it below. 

For a special birthday treat, why don't you vote for the YCDT Project to win the Diabetes Hands Foundation Micro Seed Grant.   Vote so the You Can Do This Project can reach further, and help more people.    Here is Kim's video explaining what she would do with the funds if she won the grant.   At the end of the video there is a "like" and "share" button.  By hitting these, you will have officially voted for You Can Do This!

Have I made my own individual video yet?  I'm ashamed to say I have not.

I have a million excuses, but none seem worth writing down.  Now that I have a new camera with a video feature I better get my bahookie in gear and do this thing!

Are you up to the task?  There are others out there who want to hear your stories.  Others NEED to know they aren't alone in this. 

You can do this.  Video up friends!

Click HERE for more information about the site and to access the videos!

And Happy Birthday You Can Do This Project!  You are making a difference in this world, and that is worth celebrating!

P.S. If you get this post through your email, please click on the title of the post.  It will bring you to my blog and you will be able to view the videos.  Thanks!

Sunday, June 10, 2012

Gotta catch 'em all!

"Gotta catch 'em all!"  The tagline to the Pokemon empire. 
I know I have a diverse reading audience...and I know not all of you are Pokemon connoisseurs...but I have four boys, so Pokemon has been a big deal around here for a good ten years.
This is Ash Catchem:

Ash is the main character of the Pokemon saga.  He is a young boy who wishes to be a Pokemon catcher champion of sorts, and as such, he spends his days wandering the land looking for unsuspecting Pokemon to catch.
Like Ash Catchem, we work hard around here to catch the little monsters we like to call, "Lows." 

We've been fighting some wonky sugars since school has let out.  Lately, there's been  a ton of long nights for this mama, and in return for those long nights, I'm getting no peace of mind whatsoever.

Thankfully, our endo appointment is today.

Did I just say that out loud?  You know I'm desperate when I use the words "Endo" and "Luckily" in the same sentence.

The other night I stayed up late to make sure the boys were in a good place.  I went to bed about 11:30 and set my alarm for 1:00am.

When the alarm sounded Ryan was already sitting on the side of the bed, on his way to the bathroom...

"Would you mind checking L?  The other boys are fine."

"Sure," he says.

Now between you and me, I would never in a million years  check just ONE of the boys.  If I'm up to check one, then I'm up to check them all.  I felt guilty asking Ryan to do it in the first place, (he hasn't been sleeping well at all lately,) so I asked him to check the one I was really worried about.

Lucky for me my husband is a sweetheart, because he couldn't just check one either.

Turns out J was 59.  And he was the one I wasn't worried about.

Pancreas fail.

It follows as an unspoken rule in our house:  If one needs to check, then they all need to check.  There are a few exceptions...If someone has just had a low, and needs to retest, we don't make them all test, (obviously,) but for the most part it is just easier for everyone to test at the same time.

And as the previous example shows, one never knows what one will find when everyone tests.  There are always some surprises.  We are not perfect at this diabetic life...but one thing is for sure, we do the work.  We test, and retest and test again.  Information is power.

When Ryan came back to bed after he found the low, he explained to me what happened while I was in my sleepy stupor.  I was completely still as he was speaking to me...he was sure I didn't hear a word he said.  Apparently, after a couple minutes, I rolled over and proclaimed, "Gotta catch 'em all!"  (Pause.)  "Whoa!  I'm so blogging that!"

Bazinga!  Officially blogged baby!  My work here is done!

Tuesday, June 5, 2012

And it goes on and on and on...

I could tell you a little story about a blood sugar catastrophe and end my blog with a lesson learned...

But the story wouldn't be over.

I could tell you a story about a set change gone wrong and then end the post with a pithy saying... 

But the story wouldn't be over.

I could tell you how I bolused before I realized the site was kinked...instead of after...

But that isn't the whole story.

Because something always happens next.

The story goes on and on and on.

I could tell you about a crazy vacation when we used ten times the usual blood sugar strips, and saw ten times the usual lows.

And you would see I fixed the problem.  And you might even think that was the end of the story...

But seriously...that doesn't even begin to explain it.

There is always a next.

There is always something to write about.  Something to say.  Something to celebrate.  Something to lament.

Our Diabetic Life is just that.  Our LIFE.  Life goes on.  Diabetes goes on.

No matter how well things are going, or how bad things are going, there is always a P.S. at the bottom of my letter.

There is always more.

There is never a tidy end to any of it.

Last week L's pump battery died in stopped traffic an hour away from home.

Luckily I had a spare battery in a emergency pack in the glove box.

End of story?

Not even close.

It's the story that never ends.  It goes on and on my friends.  Some people started reading it not know what it was...and they'll continue reading it forever just because...It is the story that never ends.  It goes on and on my friends.  Some people started reading it not knowing what it was...and they'll continue...

You get the picture.

One would think that when the kids go to bed at night, we get the opportunity to start a new story the next morning. 

Not the case.

Diabetes lives on during the night.  The blood sugar hamster wheel spins on into the wee hours of the night into the wee hours of the morning...just to continue to the next day and the next.

It is exhausting.

It is The Neverending story on steroids.

It is the heartbeat of our family.  You can't hear heartbeats.  Stand in front of someone you can't hear it.  You can't see it.  But it is important...and it is always there.  In our life, it takes effort to keep those hearts beating.  Every minute of every day we work to keep those hearts pumping.

Type 1 Diabetes is always there.

Hearts must always beat.  Insulin must always drip.  It is that important.

That is pretty much all I have to write now...

I will get up from this computer in a moment and continue living our story.

Of course, I'll be back and give you a glimpse into our life...but it will just be a snapshot of the daily marathon we run.

The full story continues into our reality.

Always...on and on.

.  <---------- That period should mark the end of this post.

But really, it's not the end of anything other than my words.

The post may end, but my day is just beginning.

.  <---------- But not really.

There is never a period with diabetes.

Just ellipses.


That is our diabetic life.


on and on for always.


Until a cure.  When there is a cure, then there will be a period.

So, until then...

Sunday, June 3, 2012

Tripping on basals

Do you hear it?  It is the swooshing of insulin, tiny little puffs, certainly going off right this minute delivering insulin to my boys.  The sweet nectar of life.  Swish, puff, drip...insulin is constantly being delivered via their insulin pumps 24/7.  It is called BASAL insulin and it is a tricky little sucker to control.  It is the insulin that works in the background.  It doesn't cover their meals, it simply keeps them alive.  The changes made to this basal insulin generally needs to be very is a delicate process.  A delicate process that sometimes requires much trial and error. 

I think by now you should all know how I feel about adjusting basals...

(When I get really upset I do this thing I like to call the "frustrated Yeti."  It is a gurgling noise that sounds like it comes from the back of my throat, but really it comes from my soul.  I'm  Yeti-ing all over the place people.)


Summer cometh!  And as such, so doth the basal changes!

It happens like clockwork every year for our family.  Last day of school and WHAM!  High blood sugars.  A new routine means new basal changes for the boys.

It is a necessary evil that comes along with Our Diabetic Life.

I made basal adjustments on L and B, JUST before we left on our little vacation last!

To make up for the lack of basal lately, I've been rage bolusing at every meal.  Rage bolusing means bolusing WAY more than needed to make up for the extra insulin needs the change of year/routine requires.

Now that I've changed basals, I need to dial down my raging and find the sweet spot.  That takes trial and error, and leave it to me to pick the days we are going on vacation to do said trials and errors...

Boo yeah!  I'm wicked wild like that!

We've seen more lows the past three days than we have seen in the past three months.  Not cool...but a bit of a relief not seeing so many highs.  I now feel confident enough to bolus what I SHOULD be bolusing at meals, rather than padding the boluses to compensate for the lack of basal.

(In my world...that means progress!)

Poor J had to learn the hard way when it is right to change basals.  As you may or may not be aware, J is 95% on his own diabetes wise.  He counts his own carbs, he boluses himself, he changes his own sets.  He does it all.  When we were in Santa Cruz this weekend, and we all had some ice cream on the boardwalk, I asked J how much he bolused for it. 

"40 carbs," was his reply.

"Huh," I said.  "I bolused the littles 60 carbs."

"Trust me mom...I'm always right."

And you know what...he usually IS always right.  But man, that one little mistake brought him to the high 400's.  Somewhere he hasn't seen in a long while.  He was MISERABLE.  He refused dinner and would only drink water. He was whiter than usual, he had the chills and felt crappy from head to toe.  I had him sit next to me while I ate dinner and we had a heart to heart.  We talked about basals, and I asked him how his numbers have been. 

"Pretty ok." he said.  "Not great. Not horrible."

"When was your last low?"  I asked.

"I can't remember."

Which is great.  But if you can't remember when your last low was...then maybe you are running too high.  This is the first time in awhile that "I" have changed basals for him.  Usually it's our endo who changes it up.  They have some kind of great system, because his A1C's have been great in the past.  But it seemed logical to me that if B and L have MUCH higher insulin needs right must J.

Time will tell.

Blah.  I want answers now.

Patience is a virtue I'm learning to tolerate.  (Man that sentence is the story of my life.  For serious!)

The boys went to bed 87, 102 and 79.  They had a bit of a snack and now I'm off to see if we nailed it or not.

God, grant me the serenity to accept the basals I should not change, the courage to change the ones I can...and the wisdom to know the difference.

That should be on a T-Shirt.

That is all.