Tuesday, May 8, 2012

My life: The million piece jigsaw puzzle

My life is a puzzle.

It's sitting in front of me in a million different pieces.


I want more than anything to put all the pieces in their place.  I don't like clutter. 

But the pieces shift and situations change.  Just when I have all the edges picked out of the pile...the edges morph into center pieces.  Their smooth lines change to curves and pointy 45 degree angles.

I spend my days mentally trying to put it all together.  Trying to make sense of the big picture.

I sort out my thoughts into separate color piles.  Organizing my feelings in each situation.  Are these feelings here because of the cancer?  Am I angry right now because of diabetes?  Am I scared or am I just a human being feeling what should be felt?

The biggest problem lays in the fact that I'm not in full control of the puzzle.

People, problems, life...they walk into my swelly brain and mess with my progress.

These days, the puzzle doesn't seem to be any more closer to completion than it was a month ago. 
I just want to make progress.

But it is blaringly obvious to me that I'm not completely in charge of that.

Ryan's cancer decides on its own whether many of the pieces work or they don't.

The boys blood sugars have power far beyond my organization skills to mix up all my pieces again and again.

Looking at it sometimes...all I see is a big fat mess.

I put one foot in front of the other...one piece connecting with another and I keep going because I have faith that the full picture will emerge one day.  Imagining the successful future of our picture gets me through.  I'll work on this puzzle forever because I know we can eventually make it a piece of art.

The pieces are a big chaotic mess right now, but on the other hand I realize there are enough pieces at my disposal to make something out of them...smaller sections of beautiful.   And that is something. 
A very big something.

Maybe not everything fits right now...but my children are here.  My husband is here.  He is alive, and smiling.  I have my home, my family, my friends, and my faith.

All the pieces are there to make an amazing future.  Well...most of them.  Cancer is holding a few pieces hostage at the moment...but we'll get them back.  I have to believe that. 
Believing that is what keeps me moving.

Puzzles aren't meant to be put together in a single moment.

Puzzles take time.  Patience.  Faith that we can do it. 
And above all, the belief that there is a worthwhile  final picture.

Sure, the final picture I imagine for our family requires a miracle... 

But I believe the man upstairs is sorting those pieces into cohesive piles as we speak.


After all, he created the puzzle in the first place.  I need to stop scrambling and have faith that he'll guide our family to the finished product.

One prayer at a time.

One piece at a time.


 

Saturday, May 5, 2012

Blue Cinco de Mayo...


In Loving Memory...
Gone too soon, nine years ago, today.

Gone, but not forgotten... 
Just one loving memory away.

Hector Rafael Collazo Santos
(September 11, 1938 - May 5th, 2003)

He may have lost his chapter with Type 2 Diabetes,
but the WAR continues with me.

I will keep on fighting, dad.
I will NOT give up.

Rest in Peace




Friday, May 4, 2012

Atypical ranting soapbox mama

I'm in a mood.  I'm wagging my finger and double air snapping all over the place.
Oh look!  A soapbox!  Looks inviting... 
Listen up!

It is real.

Diabetes is not a joke.

People honestly think that fat people just need to eat less and diabetes will disappear.

Diabetes is not a fat person's disease.  It is an everyone disease.

Type 1, Type 2, Lada, Gestational, all of it...everyone is a target no matter what your waist size.

My boys have a type of diabetes called Type 1.  It thrives in the otherwise healthy population.  This particular type is autoimmune...it is serious...it is not a joke.

Diet won't make it go away.  Diet won't make them "better."
 
Their pancreases do not make insulin.  NO INSULIN.  Too bad every one's bodies need a constant stream of insulin to survive.  If insulin was only kinda important it wouldn't be a big deal.  But insulin is very important...so important that just a few hours without it is an emergency...a life threatening emergency.

But the world turns a blind eye and doesn't want to see what a serious thing it is. 
Story time.  TRUE story time.
 
Grab a blanket and some cocoa 'cause it's gonna get all kinds of real up in this blog...

Today I was picking up my boys from school.   My nephew attends my littles school and I was chatting with my sis.  We said goodbye and within minutes she doubled back to find me again.

"Meri!  Did you know L is laying down on the ground...in the middle of the playground?"

I ran over to him and found him face up laying flat on the ground. 

"What's up L?  Are you low?"

"No...I'm just so super tired.  My body doesn't want to work.  I just want to sleep."

"Are you sure you aren't low?"

"I am sure.  I checked my sugar before school was out and I was a little high.  I gave myself insulin"

We get the car and pick up his brothers at the Junior high and High School.  We run to the outlet mall...I need a baby shower present and L needs shoes.  Like...his shoes are 2 sizes too small...

But as we are walking into the mall L says he is going to throw up.

Blood sugar:  592.

I check his pump.  His reservoir is full of insulin.  I check his history.  Yes, he gave himself lunch insulin.
 
I have him bolus himself insulin to correct his sugar and send another child to the drink machine to buy L a bottle of water.

But my gut tells me something is wronger than it seems, so after the insulin is injected, I take off his set and prime out a unit of insulin...just to make sure it is working. 

I hold his set up to the sun so I can see more clearly...
Nothing is coming out.  
I try again.  A tiny speck appears. 

"What do you think J?"

"That isn't a unit." Says J.

Then I feel it.  Insulin on my hand.  The tubing cracked and L wasn't getting any insulin at all.  I look at B with my mouth agape.  B returns my stunned gaze and says, "dot dot dot."  Which is his way of saying  "..." which is his way of articulating an uncomfortable pause or heavy moment.  Probably a sign that he plays too much Mindcraft, but I digress...

L is about to lose it.  We run to the bathroom and he composes himself.

So then I order B to take his pump off and give it to L.  I give L the proper amount of insulin through the prime so it doesn't show up on B's IOB.  And I leave the pump on L...he needs the insulin more than B right now.  

What kind of choice is that?  Not cool fates.  Not cool.

So we get home and this is what I find.


And checking ketones takes a lot of extra blood...more than a normal blood sugar test.  And blood spurts all over me...

And my baby looks like this.


And so I throw on new tubing and a fresh reservoir with fresh insulin for good measure.


I insert the needle into my boy, and pull it out leaving the tubing inside.


I spend the next two hours monitoring ketones and blood sugars and finally realize...

Meri...you can breathe.  He is going to be okay.

But here is the kicker...

What if I didn't test his sugar?  What if I left him and figured he had the flu?  What if I didn't test him at all the rest of the day? 

I'll tell you what would have happened...He would have gone into a coma...or even worse.

Now I know you are all rolling your eyes and thinking:
"MERI!  That would never happen!  You are a rockin' pancreas.  You always are vigilant about checking your boys.  You would never ignore symptoms and not check him."

And you are right.  I never would.  But it happens around the world...ALL THE TIME.

Maybe a family can't afford the test strips.  They are a dollar a piece.  Some families can only afford to test their child one time a day...if at all.  Somefamilies can't even afford insulin for crying out loud!  And they have to CHOOSE to let their child die.

There are teens out there, adults even, that don't test for days.  Maybe they weren't educated about the importance of it.  Maybe they are just so darn sick of CONSTANTLY CHECKING ALL THE TIME.

There are people out there misdiagnosed as Type 2...when they really have Type 1.  I can't even properly relate how dangerous this is.  Most Type 2's can go without insulin...there isn't a Type 1 in the world that can go without it.  (Most type 2's make insulin...it is slow and sometimes insufficient...but it is present.)

It's serious. 

I'm pretty okay with that.  On hard days, like today, it is hard to be okay with it.  But for the most part I accept our story.  We can do this.

But so so many are misinformed.  Even by doctors.  Misinformation is just as much an epidemic as diabetes is.

And those on the outside looking in think it is a dietary issue.   That's just cruel.

Our life is REAL, and SERIOUS every day.
 
And lest you want to gag...I want you to know I am honestly not complaining...

I'm just seriously gobsmacked with the misrepresentation diabetes has in the media.

I'm getting off my soapbox now...and going to bed.

For a couple hours anyway...

Because at 2am I will be checking blood sugars and ketones again.  Because diabetes never sleeps and not checking is a gamble.

Sure, the odds are in their favor that they will wake up alive even if I don't check.  But I don't play the odds when it comes to my boys. 

I don't gamble with my children's lives.

Because as I said before...Diabetes is serious.

How can we get the world to see?

(Wow. How did this soapbox get into my bed?)

Lights out on my rant.

Good night.

Thursday, May 3, 2012

When Will I Die From Type 2 Diabetes?

"I do what I have to do, so that I can do what I want to do."
Life is not a simple exercise for me. While it just seems to come naturally to some, it's just not so, for me. Having a positive state of mind is a continuous choice I have to make, and it is a continuous decision to stop self destructive thoughts in their tracks, and choose to believe the positive mantras that might seem cheesy, or ludicrous to me.

I don't really know why I am like this... and I could psycho-analyze it to death, but I'm not sure how helpful that would be. I'm pretty sure that some of the hurdles I've faced (especially in my childhood) have helped me develop a somewhat dim view of the world. Things like childhood obesity, a grim personal appearance (thanks to undiagnosed PCOS), constant exhaustion and mood swings (thanks to undiagnosed Hypothyroidism), uninvested parents and a lack of personal development, etc.

I felt so alone most of my childhood, and so inadequate, that I spent it trying to pursue instant gratification. In my teen years, eating and TV became my sole companions and comforts, while my family was mostly off in their own world. It's still like this today, you know. I don't get social phone calls from family, nor so much as a card on a birthday, or a holiday... and quite frankly, I don't remember the last time I got anything at all in the mail, from them, or even a social phone call. You can see why a child would try to drown itself with 'love' in the form of whatever one came across -- be it food, or TV, or what have you. Pick your poison.

When one is swimming in loneliness, illness induced mood swings, life induced anxiety, and self loathing... it is extremely hard to have self control of any kind. Whether it be with your refrigerator, or with your checkbook, or whatever brings you immediate release. What's worse is that when you don't have deadlines or commitments of any kind, you can put off desperately needed changes, for as long as possible and tell yourself that 'tomorrow, you will start;' but when someone tells you that you have NO choice, that it's the hour zero and you need to buckle down, or else... your life turns into a shiny, red button. Do not press the shiny red button, they say... You must guard yourself to never press the shiny red button. Everyone's anticipating, and policing you. Everyone knows.

History Eraser Button



If the video doesn't show, follow the link above.

This is what life is like for many of my fellow type 2 diabetics, right now... A shiny red button. It's easy to understand how one gets to that kind of place, and ever soooo hard to help someone get out of that place, see the light, and understand that although life may be smacking us with its behind (like the announcer guy on this Ren and Stimpy video), that we have a choice. We indeed have a choice, and our lives don't automatically go down the drain... Our destinies are not planned for us. We MAKE our own futures; we write them today.

Someone I admire profoundly, once said to me: "Lizmari, you are no one's victim." 

But it's so comforting to believe that I am; that I am life's victim, that I have no choices, that I am like a small boat, with no sails, and no paddles... at the mercy of life's waves. That I am being held hostage at the mercy of a big, shiny red button, awaiting to erase history; MY HISTORY. Or at least, in my warped sense of self I like to think it is... "Woe is me..."

Why? Because it's PAINFUL to not be anyone's victim. It takes MUSCLE, and exercising your discipline muscle is just as painful as stretching your calves. Ouch. 

... But I am not anyone's victim. I AM NOT, and neither are you. 

Listen to me, friend. You who decided to google "When will I die from Type 2 Diabetes?" and suddenly chanced upon my blog: You are not a tiny raft, alone at sea. You are a MASSIVE ship, and you can take charge of your course. You can choose to stir your ship into the icebergs, you can choose to press the shiny red buttons of your life, every day... Or you can choose to tell diabetes to buzz off.
"Hey, diabetes... GET LOST. You may place hurdles in my life, but you will NOT take me. Not today. TODAY WILL NOT BE THE DAY. I am NOT your victim. You are NOT my master. I AM, and I am allowed to BE, and you do NOT get to tell me who I am, what I am, and when I get to leave." 
I have my own shiny, red buttons... and I understand. Believe me, I do... 

But you have choices... And while you may decide to throw in the towel, let me remind you (or perhaps inform you), that Type 2 Diabetes =/= death. YOU have the power to let it equal LIFE. A life reborn, a life re-defined, a life EMBRACED. 

Embrace life, WITH diabetes. It may take courage to not be a victim... but I promise you, if you do it, you will NOT be disappointed. You will be OKAY. You will not just survive, but you will THRIVE. You can do this thing... Life awaits you! 

I promise. 

Will you take the challenge?






Wednesday, May 2, 2012

Ruh Roh.........Hacker Alert

First I would like to apologize to all the people who receive emails automatically from, and the group of readers who check in to OUR Diabetic Life.  This is not the usual witty, well crafted, insightful post that generally comes from this blog.  Grammar? Whose the Hells needs Grammar? This is not even the person who writes the blog, it is her husband, Ryan.

I do have a swelly brain, not the original one but I do have pictures to prove mine.  In this post I will add some things I like……I like to call them “flairs.”  I may throw in one of these !!! Just to add a little spice. I even plan on posting a picture and adding a song.  Now don’t think I’m an amateur at this, I have my own blog! Oh ya, it’s called “Welcome to My World, a husband’s feeble attempt to enter his wife’s world in order to get closer to her.”  Started it a year and a half ago, I belted out 6 posts...believe me they were epic.

Now Meri has asked me in years past why I never comment or guest post or even read her blog.  She talks about other male bloggers and awesome observers like Fred Cunha, Manny Hernandez, and Mike Hoskins.  That’s when my blog idea came about, but I started thinking about all the pressure of having everyone know that I was Meri’s husband and my posts and comments be….. dare I say at times inappropriate or not politically correct. What also came to thought was I didn’t want to ride the coattails of my famous wife.  So conflicted, I thought of Emilio Estevez, he not wanting to ride his dad’s fame, changed his name.  So I came up with this idea of creating an alter ego, someone that wouldn’t be tied to Meri and she would know it was me……..I called him Enrique Ferrell (I was thinking of someone sexy, everyone name Enrique is sexy, and funny, Ferrell, cause I think Will Ferrell KILLS!) I know what you’re thinking………this guy is either making this up or he’s crazy………it’s the latter, this is a true story.  It’s CRAZY love.

OK so on to my list of things I want you, Meri to know, and a few things I want the blogosphere world to know.  I want you to know it tears me up inside that I’m putting you through this.  I also want you to know I thank God it’s me and not you.  I don’t think I could be as strong as you watching your soul mate go through this, you are MY hero!!!  I want you to know that is the most twisted 3 sentences I have ever put together, they contradict each other and almost don’t make sense.  I want you to know that “spoiling” you make me feel like I’m doing something of worth.  You are the most important person in my life and that’s where all my efforts should go.  I want you to know that I don’t “think” you’re beautiful, you light up my life and any room you walk into.  I smile at you after a disagreement because you are so damn cute and it’s not worth a second of our time to be cross with each other.  I want you to know that as years of our marriage continue to grow they only get sweeter.  I can’t believe how blessed we are. I give you all the credit for the boys, they are so awesome. So much better than I was and that’s on you.  Without you I would still be stuck in the bakery, thank you for believing and seeing something in me I could have never comprehended on my own.  We have been married 6941 days and I’ve loved you every single one.  I want to add something that will “B LOW YOUR MIND“ (in the words of Jack Black,) but I tell you everything :P   I want your friends to know I appreciate all of you and the support, prayers, and love we receive from you each day. We feel these physically every day.  I will dedicate hours at Friends for Life just for hugs (I’m a hugger). I had a hard time realizing you all were real people but did get that realization before all chaos came into our life.  I see the support Meri gives and takes and it’s a beautiful thing.  I want you to know my family and I will make every effort to pay forward all the acts of kindness offered to our family.

Meri you are my best friend and I love you with all my heart and I know you feel the same way. I look so forward to a bright future walking hand in hand in love forever and always.

I said I’d post a picture and a video…..I lied. Just a video if I can get it on :) I think this song was written for Meri and I..

http://www.youtube.com/watch?v=pG1pG47XStA&feature=player_detailpage
 
 
Ryan

Tuesday, May 1, 2012

Ryan, I want you to know something...

Ryan reads my blog.
He subscribes to it and receives emails on an account that I thought he never visited.  (The other day when he said, "Run, Ryan Run!" as he looked at me sheepishly with one eyebrow raised and a smirk, I realized this wasn't the case.  He reads every post.)
Hi Babe!

So today in honor of our nineteenth anniversary, I thought I'd write him a little note, spoofing off another blog/love letter I sent to all of you a year or two ago...
Dear Ryan,

I want you to know something...
I want you to know that when you tell me you love me,
I know that you mean it.  I know that you mean it forever.

I want you to know that I've loved you from the first day I saw you in Mike's window.

I want you to know that I fully realize how lucky I am to have you.

I want you to know that I KNOW you are my greatest blessing.
I want you to know that I'm proud of every day of our history.

I want you to know that when you smile at me after a disagreement, really...everything is made better instantly.
I want you to know that after years of you taking care of me...spoiling me...I'm glad to take care of you.  You've done so much more for me than I've ever done, or will do, for you.

I want you to know that I LOVE that you loved picking up the boys from school.  You are a great father, and I know it meant a lot to them.
I want you to know that you will be able to pick them up again. 

You make the best breakfasts.  I don't take them for granted.
I want you to know that even though the steroids make you look different on the outside, you are still my Ryan on the inside, and still every bit the man I married...plus every bit the man I am madly in love with.

Your smiling eyes and bear hugs are two of the things I love most...but you know that.
I want you to know I wouldn't take back one day of our life together.  I look back and don't see any bad times.  I see hard times.  Times when we had babies, and diagnoses, and times when working 15 hour days was normal for you.  Those hard times have brought our love to where it is today.  It was all SO worth it.

I want you to know I want to be better, I try to be better...for you, because of you.
I want you to know that this is just a bump in the road.  We can do this.  You are the strongest most wonderful person I know.  Don't be hard on yourself.  Fighting cancer is HARD...and exhausting.

You can do this!  I want you to know I truly believe that.
I want you to know I love you more every day...still.  It seems impossible that I could love you more tomorrow than today, but experience tells me I will.


Thank you for loving me Ryan....for seeing past all my imperfections.  Thank you for telling me every day that you love me.  Thank you for thinking I am beautiful.  Thank you for nineteen years, and thank you for fighting for nineteen more.

I want you to know you're my hero.

Forever yours,

Tuesday, April 24, 2012

Are Diabetics Angry...?


(See Also: Diabetes and Anger -- Is there a Deeper Connection?

This angry diabetic has been really bewildered for the past few weeks with many new and personal challenges...  As we know, life's problems do not stop at diabetes, or any other chronic illness, nor do they care if we're having to juggle other things. In fact, in the storm of life... sometimes when it rains, it just pours. (I need to buy a raincoat.)

So, I thought... why not take a little time to address a common, and often overlooked, issue with diabetes? Anger. In the past few weeks, my blog has registered many, many Google searches for "anger and diabetes," "do diabetics suffer from anger," "do diabetics need anger management," etc. I fear many of these folks might be family members really wanting to understand, and care for their loved ones... or maybe folks just wanting to understand themselves a little better.

Before I get a little further into the discussion, I want to add that while the emotions we experience through the ups and downs of illness, and life, are perfectly normal... this blog post is in NO WAY a justification for aggression, violence, or abuse. It might be an EXPLANATION of a course of events, but in the end... we are responsible for our own selves, and how we manage our health, and our emotions.

Got that? Okay... :)

Diabetes is a PERVASIVE disease...

Now, in order to make some of kind of sense of the emotions a person with diabetes might feel, we need to understand one thing: Diabetes is a PERVASIVE life change. It is one of the most pervasive life changes an 'afflicted' person will ever have to face. While it may not seem as such in the beginning stages (especially for type 2, and often during a "honeymoon phase" for a type 1), with time, an individual will soon become painfully aware of just how MUCH diabetes will demand of them.

Diabetes demands that we (and often our loved ones) learn a LOT of information in a short amount of time, and often more than many medical professionals; that we completely change how we view our eating habits, and what we consider healthy according to the whims and demands of a little electronic gadget called a 'glucose meter;' that we throw away the information we once thought made SENSE, for a new, and obscure world which we merely go about feeling, through the grace and support of others who have been there before us; that we are on alert to protect ourselves from the harm of careless outsiders, or clueless third parties. It demands that we learn to 'forecast' how meals will affect us, depending on their level of carbohydrates, fiber, protein, and fat, and sometimes... algebra, and the phases of the moon! :) And yes... just to throw a nice wrench in it, diabetes often demands FAMILY UNITY and outside support. Diabetes... is a THIEF of spontaneity. It demands you plan out almost every moment of your life.

Let's face it, if most of us got into a relationship with someone who was like this, we'd call them CONTROLLING... And most of us can't handle change very well, let alone pervasive change. A social network like Facebook changes how some things look, and feel, and millions of people get up in arms, and feel imprisoned! Living in harmony with a controlling, and demanding disease like diabetes, is NOT an easy feat for the weak-hearted, or for those who fly off the seat of their pants. It is HARD work; often 24/7 work. It is like chess; one always needs to think 2 or 3, or 4 moves ahead. If you snooze... you lose.

Diabetes makes us feel judged... 

Being diagnosed with diabetes, in itself, can be anger inducing. We often feel like we have failed somehow. Whether it's type 1, or type 2, folks often feel a big burden of guilt over past habits or parenting, or perceived flaws (however erroneous those might be.) Often, folks who were diagnosed with type 2 diabetes may have been fighting, or struggling with weight and eating habits for years, before feeling like they were given a 'death' sentence for 'failing' to make the grade at these tasks. To top it off, few medical professionals discuss how BIG the role of our genetic make up is when it comes to diagnosis, and how even folks who are thin, or otherwise in relatively good health, can end up with a diabetes diagnosis.

Instead, diabetes is portrayed as the disease of the obese and inactive, and not simply a disease in which our immune systems are more sensitive to unhealthful triggers, thanks to our genetic make up. Many things like alcohol, smoking, other medications and illnesses, as well as pollutants or pesticides, may trigger a diabetes diagnosis. Some of those triggers, we may work at reducing their influence; some, we may not. One works at REDUCING the risk of getting diabetes, but the use of the word "prevention" is a potentially judgment inducing misnomer.

Diabetes is poorly understood... 

Diabetes doesn't just bring with it a lot of self blame... It often brings with it the blame of outsiders who poorly understand this disease. This is, in part, the fault of our current medical professionals, and in part, the fault of our media who is looking to market to, and cash in, on a 'growing' population.

One would think that for such a deadly disease, there would be many prepared and able medical professionals, and certainly... there are some great ones out there. However, the amount of uneducated, misguided, and often, dangerous medical professionals out there, is staggering. Many patients, particularly type 2s, are left out in the dark... with little information as to what they have, and how to proceed. They are often kept from access to specialists, educators, testing tools, and insulin... so managing this disease, and learning how to do so in what one would think should be a safe environment, are often HUGE, and frustrating, hurdles. Many folks end up erroneously thinking this is a disease of avoiding sweets -- which it is not -- and are left not understanding why they can't make strides, and worse, being judged and labeled as "noncompliant."

The amount of new information we are learning about diabetes, every day, is far outpacing the amount of continuous diabetic education many medical professionals are receiving. This leaves us with a world of antiquated guidelines, and outdated diabetic organizations... leaving many patients out there, clueless, and confused.

Diabetics are poorly understood... 

It follows that because diabetes is such a pervasive disease, and such a complicated and misunderstood disease, that diabetics themselves would be misunderstood.

Many folks can understand the need to keep a home free of elements that might provoke a deadly allergy, in a family member, such as nuts... Few folks can understand what it's like to have to completely re-structure a life after a disease, and require the support of the entire family unit to achieve it. Often, family members or friends, might think that diabetes is just the person's problem, and that they don't need to contribute or support in any way. They don't want us to "cramp" their style, or to have to change on our account, in any way. Often, for example, if a person with diabetes is the cook in the home, they end up making different meals for their family, or may even get little acknowledgement for their desire to have a healthier pantry in the home.

Feelings of frustration, anger or resentment, are often met with snide comments of disbelief: "What's the big deal? You can eat that...," "Just diet and exercise and your diabetes will go away...," "So? Just stop eating sugar...," "I don't see why you feel so sick, you must be faking...," "You brought this on yourself, anyway... It's your fault... I'm not the one with diabetes...," "Please don't bore me with your disease...," "At least it's not cancer...," etc...

For the diabetic, it's often a lonely world, especially if one does not have a support group to vent in. Our struggles often go unacknowledged, and we can be viewed as drama queens, or hypochondriacs 'obsessed' with our disease. It is a 'nuisance' for others to change, especially if that change is INDIRECTLY related to them. Diabetics will often feel left out of activities involving food, particularly if the items are challenging and no longer doable for them.

Diabetes brings scam artists and opportunists... 

Often, our loved ones who DO try to help fall prey to media misinformation, scams, and opportunists. This is not surprising, since there is so little accurate information out there, it presents an information vacuum for predators and those who want ratings and readership, and a trap for folks who want hope, and are not getting the right education and attention from their medical teams. We live in a society that wants quick answers, and quick remedies, and quick blame... and is prone to gullibility. Unfortunately, scammers want a quick buck, too... and many "doctors" have long abandoned their Hippocratic oath, over worship of the all-mighty dollar. (If it's a TV doctor, or a doctor with complaints or cures about EVERYTHING, and an opportunity to sell you an expensive supplement or product to fix it, or a book to cure it... He is NOT a true doctor. If every doctor or 'specialist' in the article you just read looks like a super model of some sort, they are most likely NOT 'nationally renowned.')

Unfortunately, actual medical professionals have been guilty of misleading regular folks with promises of gastric bypass cures, and diet cures, as well. Telling folks if they just lost weight, they wouldn't have diabetes anymore... or treating them like school children who need pass and fail grades. Recently, a famous 'study' hawked the 'curative' properties of gastric bypass, but what NO ONE noted was that the company sponsoring and paying for the study was the medical company PROFITING from the gastric bypasses. (Yes, I am sure cigarette companies would just LOVE to tell me how healthy cigarettes are for me, if left to their OWN designed studies.)

Now, a well educated diabetic, constantly on their toes about misinformation can CATCH these tricks full of smoke and mirrors, but a relative who is not in the middle of the fray, or a well meaning friend or person, is not as apt to pay attention, and more likely to assume or rely on the 'goodness' of the medical establishment. I mean, why not? This crazy study was published EVERYWHERE; even the New York Times.

Opportunistic journalists often feed on opportunistic headlines from opportunistic profit seeking groups, or doctors, and this creates a world of hurt, trouble, and often anger, for many persons with diabetes.

Diabetes is PERVASIVE in ignorance... 

I wish diabetes was JUST a misunderstood disease; the problem is people will make decisions BASED on that ignorance, and misinformation.

Doctors choose to not educate themselves because it's a disease that can be 'avoided' and it's the person's fault; insurance companies choose to not cover services, supplies and medicines, and testing tools, because it's a disease that could have been 'avoided,' and it's the person's fault; employers choose to not respect diabetic's needs because they see them as 'making stuff up' because according to many poor doctors, it's 'no big deal,' and it could have been 'avoided,' and it's the person's fault... and it keeps snowballing and snowballing.

You get the idea.

For diabetics, proving themselves as worthy patients, employees, friends, and family members, is often a daunting task. NO ONE today would dare go accusing someone with AIDS of giving themselves a disease, and chastise them; however, this is often the bread and butter of diabetes... Especially, type 2 diabetes and small children with type 1 whose parents often get accused of having given them 'too much sugar' as babies. I mean, who thinks that? Do you know any moms out there who filled their baby's bottles with pixie dust sticks? I don't...

Diabetes BRINGS mood swings...

Anger, depression, loneliness, you name it. When our blood glucose levels get either too high, or too low, our moods WILL swing back and forth. Mood swings can vary between just general grouchiness, irritability, to violence (especially, during low blood sugars, when we may have little control over who we are.)

It's bad enough dealing with this scenario, but often friends just make us feel 'belittled' when they ask "Can you check your blood sugar?," if we share our emotions, or our frustrations. I admit, it's sometimes not so easy to tell... but if you're in the middle of a rational argument with someone, do not stop to ask them this; it's quite the same as asking a woman if she's on her period. I don't condone violence, but I can't say violence WON'T happen if you happen to reduce someone's honest views or emotions to a blood glucose episode.

How can I help? 

Be an active "reader", and consider your friend or loved one with diabetes, as an open book; that is, listen more, and talk less. Read more, and assume less. Seek to learn, and seek ways in which you can be of help. Instead of suggesting actual tasks to 'police' your diabetic's behavior, you may ask an open ended question, such as "Is there anything I can help you with?" Or, "I have noticed you struggle with x, y, and z... is there anything I can do to make that easier?"

We can help our diabetics by "dividing and conquering" tasks, like bringing back up glucose supplies, or calling ahead to find out what meals will be served at events, or friends' places. We can even help by making a favorite diabetic's dish to bring. I don't know why, but these small things that take away my 'spontaneity,' are the ones that peeve me the most. If I have someone else as a back up for my forgetful mind, I don't have to feel so vulnerable at those times.

Invest your life alongside your diabetic friend or loved one's life -- I mean, you want them around for a lot longer, right? Why not go to their support groups with, or their diabetes educator sessions...? Ask thoughtful questions that do not put a person on the spot; you can ask about what a hypoglycemic event is, and feels like, when the person is NOT in the middle of one, for example.

Embrace a HEALTHIER life. Do not treat the diabetic's new life changes like they are a death sentence, but as a wake up call to the entire family that they need to be a bit more conscientious of what they eat, portion, and manage. If they are related to you by blood, it might benefit you ENORMOUSLY to follow their eating regimen and lifestyle, and get used to it now... while you don't have the strong pressure of complications looming over your head.

Finally, if your loved one, or friend, is greatly struggling with uncontrolled anger, and depression, remind them that it is OKAY to feel that way, and that it is OKAY to need some help sometimes with the overwhelming burden of managing a controlling, and demanding illness. Diabetes is as much a  psyco-social disease, as it is a physical disease, and it WILL require outside support, and often require therapy.

This blog post is by no means exhaustive, but I hope to have at least shed SOME light for many of you on how being a diabetic can change one's world view, and bring with it, many unwanted frustrations, resentment, and often anger. Much of that anger we can grow from, and overcome, and some of it will forever linger... as is the nature of the disease, and the world we must face as diabetics.

Do you have questions, or topics you would like for me to cover? Feel free to let me know. :)

Letting out the belt loop on my brain

Here's some shockaprising news:

I was up worrying all last night.

I did the 2:00am check and didn't go back to sleep. 
('Cause nighttime is the best time to worry...you totally know it.)

You probably think I was up worrying about my sweet husband
and all of the scans and appointments he has today.

That would totally make sense. 

But no.

I was worrying about my 10 year old son and the epic field trip he is going on today.

I'm sure when the fourth grade teachers got together they were over the moon that they were going to take these kids a few hours away to Old Sacramento and let them experience the rich history of California.  I'm sure they spoke of all the educational applications within the trip, and the advantage of seeing history in action.

They are good teachers.  I'm sure they talked about all of that.

But what I'm sure they didn't do, was talk about B, and my capacity to handle the worry associated with this trip.  Not that they should have discussed such things...but I'm selfish, so I'm going there.

If they did discuss B and my brain, I'm sure they would have come to the obvious revelation that Meri has a lot on her plate and doesn't need the extra worry of her son leaving on an EXTENDED day, 8:30am to 6:00pm field trip.  (And yes, I do realize that this field trip has probably been planned for months and months.  But it was nighttime, and nothing makes sense in the nighttime, remember?)

Over the years my brain has been muscled up with worry.  It can hold a lot of it, that's for sure.  It was many years of conditioning and adding bits of worry day after day.  My ability to worry is quite impressive, my swelly brain is living proof of that.

But I'm at capacity people.  A hint more of worry and I might blow.

So I spent the night putting out fires in my head and quieting the tempests of my swelly brain with meal plans and diabetes supply precautions.

He's gone on field trips before.  B is a super capable kid.  B's teacher is on it, he is a great guy. 

But factor in the nighttime crazies, a mother who's brain is in flux, and my uncanny ability to worry about such things little things as having enough mayonnaise in the fridge and such big things as my husband's scan results ...well, you get the picture...no sleep.

Lucky for me the morning sunrise brings hope and a new day. 

Though, as wonderful as that hope is...I'm pretty sure I'm going to spend this day looking forward to the sunset, when my family will all be together again.

Because being together as a family is even cooler than learning about this great state we live in.

Family trumps field trips.

B may not know that yet.  But one day when he has his own littles, he definitely will.

And as for my brain?  Well, it has another hole in its belt loop I am sure.  It always finds a way to cope...and  since Ryan's friend offered last minute to drive Ryan around this morning, I think that coping will come in the form of scrubbing my bathroom.  (Or a pedicure...Terra?  Call me!)

Friday, April 20, 2012

Sharing A1C's? It's complicated.

I read a great post over at The 'Mine today about A1C's andthe efficacy of sharing them.  I began a comment on their blog and after the second paragraph realized I should probably take it over here.


What is an A1C?  Ehow.com says this:  Hemoglobin A1C is the amount of the protein hemoglobin that has combined with glucose in a person's body. Diabetics test their hemoglobin A1C levels to monitor the average amount of glycosylated hemoglobin (glucose attached to hemoglobin) that has been in their blood over a two- to three-month period.

Basically, the A1C is thought to give you an average blood sugar number from the past three months or so.  It is considered in wider circles to be, "The diabetic's report card." 
Or in my case, "The mommy report card."

The thing about an A1C is you can get a number a couple ways:

By having sugars go up and down in wide swings.

Or by having them vary in smaller swings up and down.

Both can yield the same result.  Both have the same average blood sugar number.  Both have their own story.
One can also achieve a certain A1C from being low most of the time, or by being high most of the time.

I think that is the most important thing to note here:  There is a story behind every A1C number. 

So is it a good idea to share said number without sharing the story too?  Unfortunately, I think there is no hard and fast answer to that one.

There are the amazing A1C's.  (That number varies according to who you are and where you are in your life.)  If one receives the news of an amazing A1C, or even a better than expected A1C...doesn't one want to share this information with the world?  Can we fault them for wanting to?  Absolutely not, but the problem lies behind the story.  The way to that amazing A1C could have been reached in four different ways.  1) They are obsessive about blood sugars and check themselves or their child every hour on the hour.  Their life is completely absorbed in numbers and perfect A1C's.  2)  They have balance.  They or their child is not growing.  The numbers are falling into place like a magic puzzle.  There aren't too many lows, there aren't too many highs.  Nirvana.  3)  They are CONSTANTLY battling lows and spend their life feeding them.  4) Luck. Divine intervention.

Now writing down that your child has an A1C in the 5's or 6's  can get you the adulation you deserve, but it can also give many people the impression that this should be easily attainable.  "If this family can do it, why can't we?"  The fact is every person and child is different.  Every person reacts differently to food.  Every person reacts differently to insulin.  Why does my son B have the higher A1C of all my boys EVERY SINGLE DANG TIME?????  He has the same brilliant doctors, he has the same diet.  He has the same mother telling him what to do.  He is my most conscientious diabetic.  Why must he always be higher?

Because we are not the same.

A1C's.  Blood sugar numbers.  They are not one size fits all.  What works for one person may not work for another.  B can eat pasta ALL DAY LONG and not spike.  L on the other hand goes through the roof.  It's a crapshoot for J.

Comparing is dangerous.

But support is not.   In fact, it is essential.

Some people have spent years fighting to get their blood sugars down to their personal holy grail A1C number, and once they get there, don't they deserve a cheering section?  Some people can't get their or their child's A1C below 10.  Shouldn't they be able to share that heartache and receive the unwavering support they need so terribly? 

There is no easy answer to this one.

Sharing is important.  But it is important to share responsibly. 

 And as with anything in life:

Buyer beware.  There is a story behind every A1C number...and trust me, it isn't a short one.

Tuesday, April 17, 2012

Flip Flopping.

Something is wrong with me.
Seriously.

The last few weeks Ryan has insisted on doing EVERYTHING.  He wants to work.  He wants to see every customer.  He wants to go to every meeting. 
He wants to make big future plans.  He wants to "normal."
And for the most part I was ok with that.

Except there was a lot of me saying, "Ryan, you need to rest."

And, "Ryan, you just got out of the hospital 12 hours ago.  Why must you work? 
Can't you call your customers?"

And, "Ryan, you need to listen to your body.  You can't over do it!  Slow down!"

And, "Ryan, please go nap.  You've been running around like crazy all day."

Until yesterday Ryan said to me:
"I can't do it all."

"I'm so tired I need to nap."

"I can't see all my customers, I'll call a couple."

"I'm not going to be able to make that meeting next month."

And then I'm all, "WHOA!  What you talkin' bout Willis??!"

Well, I didn't say it out loud.  But now that he is agreeing with me...I'm upset and depressed and scared on so many levels.  I didn't realize at the time how awesome it was that he WANTED to do those other things.  I didn't realize how AWESOME it was that he COULD do those other things.

And I want to scream, "Yes you can!  GO!"

(I told you something is wrong with me.)

He's finally doing all the things I asked him to do and now I've totally flip flopped.

I took a definitive stance on the issue and now like a seasoned politician, I change my mind.
I CHANGE MY MIND!!!

I'm lost.
Are you there God?  It's me Meri.  I am lost.  I think my swelly brain has hit capacity.

I change my mind.  

Run, Ryan.  Ruuuuuuuuuuuuun!

Tuesday, April 10, 2012

All in.

The other day someone at church asked me how I was doing. (I get a lot of that lately...I'm sure you can imagine.) But as I opened up my mouth to answer his question, I was shocked to hear the following words fall out of my mouth...

"I'm all in."

He looked at me for a moment, brows furrowed, trying to figure out what I said. I returned the look, pausing to figure it all out myself...

"With my faith that is. I'm all in. I've laid it all down at His feet...I trust that He'll take care of us."

And I do.

And I'm functioning.

How am I not certifiably insane?

My head is immersed in the fog of uncertainty. Sometimes, at the end of the day I look back and wonder how I got through it.

And now I think I know...

It is because I am all in.

Going all in has allowed me to cope with all of this in a way that I never thought I could.

Ryan was in the emergency room this morning.  I won't go into the details, but needless to say it was a setback. Once I let the tears out there was no stopping them.
All. Day. Long.

But deep down...seriously...deep down at the bottom of this lake of tears I've cried...there is a peace.

Cancer fog can be so maddening. Diabetes fog can be so maddening. Hormone imbalance fog can be so maddening. The world’s fog can be so maddening.

Maybe in a weird way I am certifiably mad, as in Mad Hatter mad…

But more important than that…right now…I am certifiably coping.

And that is a miracle I cannot deny.

It's all or nothing. I'm pushing in my chips. I'm getting up from the table.

As much as it terrifies me to think we might lose...I feel confident that our needs are known.

No good questioning things now. I have faith or I don't.

Am I scared? You bet your sweet bahookie I am.

But I'm banking on my faith. Banking that my faith will always exceed my fear.

I'm all in.

Tuesday, April 3, 2012

It's about now.

I've written about it before.  I was always the kind of person who couldn't wait until...you know...until.

I was always looking FORWARD to something.  When we have another baby.  When we get a new house.  When summer comes.  When there is a cure for diabetes.

When.

That changed sometime in my early thirties.  I looked in the blue and amber eyes of my babies and realized that tomorrow doesn't matter as much as today does.  My dreams for tomorrow are gleaned from my actions right at THIS moment.  I realized I needed to take things one  day at a time.  Not one month, one year, or even one decade at a time.  On the hard days, I've learned to take things one hour at a time.  When ketones are present, or a stubborn low is looming...one minute at a time.  I realized it isn't about the cure, or the newer things, or the weekend.  It was about today.

My realization that today is more important than tomorrow didn't come in one moment, but rather many moments of making myself miserable waiting for when...

I thought I had learned that lesson, but now that Ryan has cancer, I'm back to WHEN, again.

When we hear these results...when we get the new meds...when he's off the old meds...when the scan reveals this...when when when.

It isn't a good place for my swelly brain. 
(And don't think I haven't pondered the irony of my swelly brain vs. my husbands.)

I was driving to pick up the kids from school last week.  Usually I listen to mindless semi-rap/pop/semi inappropriate music just to keep my brain in a safe place.  Any music with a message...forget about it.  I'm in a pool of tears.  But on this day...I decided I was sick of stupid music and tuned into a local radio station that is well known for its family friendly music.

Damn you Miley Cyrus.  Damn you.

Hit me like a TON OF BRICKS I tell you.  Like the windows of heaven had opened and angels were singing directly to my heart.  All the "stuff" I had been storing in the attic of my brain was let go, and only one thought permeated to my soul...

It's about the climb.  Damn it.

There will always be another mountain I'll want to move.  It will always be an uphill battle.  I just have to keep my faith and concentrate on the climb. 
When we are in rocky terrain, we don't concentrate on the meadows ahead.  We concentrate on the rocks that are right in front of us and we plan each step we take NOW carefully so that we can eventually get through this rough patch.  If I just stand here and wait for the future, then I'm not progressing.  I need to keep moving.  I need to do something meaningful today.

No more waiting.
No more...when.

Today is when.

We need to kiss our children today.  Have a talk with them today telling them how proud we are.  Approach that person today and have a conversation we have been putting off.  Start those books.  Let go of the anger.  Get those family pictures, don't wait until we are skinnier.  Go back to school.  Start those quilts.  Call our parents, or our sister or our brother.  Clean our rooms.

Today.

Today is what I make of it.  Life isn't going to be less crazy later.  Life is always crazy.  There will always be another mountain.
(I know, blah, she is the last person in the universe I thought I would be getting sage advice from...)

I don't know what the future holds for us.  I have hope that it is wonderful.  But today I will stop thinking about when, and start thinking about...
Now.       <------- Wow.  If you really look at it, THAT is a pretty powerful word.




 
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