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.

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'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.


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 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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