Saturday, December 31, 2011

Our Diabetic Life in summary: Circa 2011.

I took the time yesterday to read through many of last years posts.  I have to say, I rode the roller coaster in 2011, and I rode it well.  My ups were way up there, and my downs were way down there.  I wish I could say I rode it with the intensity and excitement of a real thrill seeker, but shockaprisingly enough...I wasn't nearly as enthusiastic about it all as I should have been.  I think I've finally made my way off the coaster for now.  It only took 12 months...but the problem lies within the problem.  Diabetes isn't going anywhere.  As long as my boys are still effected, the roller coaster will rumble by soon enough and scoop me up, I am sure. 

Strolling down Memory Lane brought back a mess of feelings I've been shoving down.  I've learned a lot about myself scrolling through the pages of my life.  I've chosen a sampling...a true showing of my heart this past year. 

Take the ride with me.

January:  I started the month Finding my way as the Unicorns fled.  The very first week of 2011, L came and sat on my lap, put his two hands on either side of my cheek, looked me directly in the eye and said he wished there was a magic potion to make diabetes disappear.

"I’ve been doing my best to fake it until I make it. It helps a little. Pretending I’m not overwhelmed with my baby’s words has helped me function. But the seed remains. The helplessness remains.  It haunts me that the only reason I’m okay with all this, is because my boys are OK with all this. If they are not OK…then my swelly brain will not be contained. It will seriously blow up."

Emotional also, was the Changing of the Guard.  I ended the month giving up the alarm clock that my cousin Todd gave my husband and I for a wedding gift.  Todd passed away just a few years after my wedding from an aneurysm at the tender age of 27. 

"I had no idea how significant the gift of an alarm clock would be on my wedding day. On that day I didn’t know that there would be nights that I would be setting the alarm to go off every hour, on the hour. I didn’t know of Our Diabetic life, or the heartache and worry that was ahead of me. Our boys were just a twinkle in our eyes back then.  I’m sure Todd had no idea either.

I know our family has been given guardian angels to watch over the boys. I know it. So it leaves me to wonder, has Todd taken the post? Is the alarm clock a symbol of his steadfast duty?  I don’t know. But the thought of it makes me smile through these tears.  God bless alarm clocks...

And God bless Guardian Angels."

February:  The first real holiday of the year and I blew it.  In, Valentines day: wherein...I get knocked down, I learn the hard way that I can't be in three places at the same time.  But I also learn that on holidays, it is OK to let kids live the dream.  One moment of eating all the candy out of their bag didn't change the axis of their A1C's. 

"We get knocked down...ALL THE TIME!  But you know what...we get back up again, every time. Up. Down. Up. Down. Up. We ALWAYS get back up. And that is something..."

March:  I struggled with The Blood Sugar Check/No Pain Enigma.  How is it that my boys don't flinch when they check their sugars?  They say it doesn't hurt.  I checked my own sugar and SON OF A GUN!  It really hurt!!  The answer to the enigma was simple as it turned out.

"I asked J how he thought it was. How come it doesn't hurt? He said, “I’m awesome. That is the only answer.”

I’m going to stop wracking my brain over this one and go with that.  My boys are just awesome."

April:  I was lucky enough to attend the blogger summit given by Medtronic.  It was a humbling experience.  My advocacy heart grew three sizes that day...

"I was bone dry.

I entered the airport terminal like a weathered sponge who had sat in the sun for days. My body ached for relief.

I didn't know what to expect from the Medtronic Advocate Forum I was to attend. It was a complete unknown, and although I was scared to death of traveling alone for the first time...to see people I had only seen within the 17 inch parameters of my computer screen, I couldn't help but smirk to myself as I walked through the jetway to the airplane...

I was ready."

In April I also wrote Teeter.  Totter.  Breathe.

"I'm on a teeter totter.

Every day.

Every hour.

Where will I wake up tomorrow? Will I be up? Will I be down? Will I be bracing myself in the middle?

Only tomorrow knows.

Too bad, the teeter totter isn't as fun as it looks.

I'd rather have both feet on the ground. I see people walk by me every day with their feet on the ground. I wonder if they know how lucky they are not to ride every day? I wonder if they have any idea how much I want to walk with my feet on the ground too?

I wonder if they even know I'm on the teeter totter?"

May:  was the month of D Blog Week.  I tackled the subject of my difference-ness in Ten Things I Can't Say to the Other Mothers.

"Sometimes I don't feel like I have a lot in common with the other moms. Sometimes when I pick up the boys, I just wish I could bust out with a little diabetes lingoed epiphany and get an AMEN from the peanut gallery.  Sure, most of the time I can fake my normalcy and talk freely with the mothers in the hallway...but sadly, sometimes I'm just in another world with my thoughts."

June:  I did not blog about a lot of things in Our Disneyland/Wally World Vacation.


"You might be thinkin' I have an entire post lined up about how L broke out into a Scarlet Fever rash THREE TIMES as worse than the others, hours before our departure...

Or maybe your hoping for the play by play of the previous hour, before his rash broke out, when L had his first swimming lesson with his NOT waterproof pump attached...

Or how we had to have a new pump sent to our hotel in Disneyland...

No...uh uh...I'm not writing about that.

I'm not even going to go into how we got the special assistance pass because I brought L with me to get it, and since he looked like he had leprosy...they started writing it out before I even explained why we needed it...

Maybe you're wondering if I'm going to write about all three boys jumping into the pool...with every one of them still wearing said un-waterproof pumps...

or about the fact that THAT led to yet ANOTHER pump being UPSed to Disney for us.

I'm not going to write about that...sorry."

July:  I wrote my deepest feelings in, Diabetes is a Sailboat.  My most viewed post of the year.

"But other days the storms come in out of nowhere. The black clouds close in and the numbers ebb and flow with the powerful tide. On those days, I watch my son ride those waves and I spend the day at my scope...determined to change the color of the clouds. If his boat capsized...I don't know what I would do.

Sure...he is above water. Sure...he is surviving. But on the stormier days his sea sickness weighs so heavy on my shoulders, I'm sure I am going to run out of strength, and one day drown into despair myself.

My son has grown up on his boat, and I am in awe every day of his constant vigilance, and his nimble control of his craft. He is an able captain now. He can hoist the sail, he can watch for the storm clouds. He can batten down the hatches. He can steer that boat away from immediate danger...he FEELS the sea. His intuition is inspiring.

Three boats I have set out to sea. It does not get easier. Every boat I have released has killed me a little bit inside. My husband and I live our lives on the shore waiting for storms, hoping for sun...watching each and every wave."

I kept the wave going in July with the Four Seasons to Diabetes.

"The winter days, those are the ones that are like sticky notes glued to our memories. The rain that falls from our tear ducts...the snow that chills our hearts to our blessings. There are the storms that toss the numbers around. There are the calms that lay before the storms that can give us a false sense of security. But during this time of year, most of us know...we KNOW...that when the calm is there, then it is time to lie in wait for the storm. Every day anticipating the winds to turn everything upside down."

August:  I dared to pour out my feelings in the dead of night.  In Finding My Fight at Midnight, I shared those haunting feelings of inadequacy that seem to haunt all of us during the early hours of the morning.

"The nighttime can be so cruel.

Devoid of light, my soul anguishes in my ineptitude.

Seeing two 400's staring back at me tonight didn't help things. In fact it began a tailspin that even I am worried I won't recover from.

In this nighttime all my hope is drowned away in pools of tears in my hands. All my positivity is enveloped in the black hole of my pity.

How is it ok that I am so completely responsible for my boys well being?

How is it ok that it is all on my shoulders?

Is this a cruel joke? Will my best ever be good enough?"

September:  After a surprisingly pleasant endo visit I wrote A1C from A to Z to help me keep it all in perspective.  I'm glad I went back to read it as we have appointments coming up in less than two weeks.
 
Ask yourself, "does this number define my worth?"

Be mindful that this number shows where you were, not where you are today.

Cast out the feelings of guilt and ineptitude.

Don't give up on yourself.

September also yielded There Are Some Things You Need to Know.

"You need to know that your child's blood sugars will never be 100% perfect all the time.

You need to know that you are stronger than you think you are.

You need to know that on the hardest of days, the fact that you don't give up counts for more than you know."

October:  I let my mind go back to the simpler days in Remembering When my Middle Name was Ann.

"Today it feels like all the walls that I have built to protect me from my simpler past, are crumbling.  I feel so vulnerable. The numbness is wearing off. I was able to keep myself numb to all the numbers for so long...and now it is like the doctor has turned off the anesthesia and I can FEEL. Every number burns. Every carb count FEELS like the most important decision of my life. The weight has returned and my back aches from the guilt."

November:  I blogged every single live long day of this month.  The one nearest to my heart is Dear 18 Year Old Me.

"You have worried about school tests, friendships and acne...but those worries don't even scratch the surface of the worry that will fill your entire being when your children are born.

They will be special. They will have needs that not many people will be able to comprehend. You will question if you are strong enough. You will question if your Heavenly Father truly knows how much you can handle...because there will be days he will give you ALL you can handle. Days when the heartache will feel like it will stop you heart at any moment.

But don't fear. Your children will be worth every sleepless night. Their resilience and their courage will inspire you to be better than you thought you could be. Stronger than you ever thought you would have to be. The refiners fire will mold the lives in your home into a true family."

December:  I hold a lot of my feelings in sometimes..outside my blogger world anyway.  And once in awhile that one day comes around when you just can't dam it all up anymore.  In Yesterday it Flowed...the dam burst in typical Meri style...

"I can try my best all day long and those numbers won't always reflect that. I have so much guilt that I can't make them perfect. It is like a secret shame that I carry around with me. Inside I know I can't do better than my best. Logically I KNOW that. But emotionally...if I am honest...my best isn't the best I want it to be. I want to be best-er."

In 2012 I will endeavour to find the joy wherever and whenever I can.  Reading through my thoughts I see loud and clear that I'm letting the guilt get the best of me.  I am better than the guilt affords me.  I will journey to set myself free.  THAT is my New Year's Resolution.

I hope you'll continue to take this ride with me.  This year will be much smoother...I'm sure of it!

Positive thinking people!  POSITIVE THINKING!

Happy New Year!


Thursday, December 29, 2011

A Virtual Switzerland.

I'm feeling pretty neutral on this whole diabetes thing lately. I'm the virtual Switzerland if you will.

People are posting some pretty nasty things about the big D out there...and I have to say, I don't blame them one single bit.

It's not like I have anything NICE to say about it or anything. It's just right now, I have no feelings about it at all.

I'm numb.

Even 90's haven't brought up the joy they used to. 400's? Whatever. I've seen them before. Let's get busy and fix it.

Right now there is no victory and no defeat. It is all just there...threaded through everything we do. Embedded in every memory.

I'm struggling to know if this is a good thing or a bad thing. Will my lack of emotion in it all affect their A1C's? They boys have appointments in a couple weeks...you would think that would put the fear of god into my heart. But nope. I've got no feeling on the subject right now.

Does this mean that life has stepped ahead of diabetes and I'm finding my joy and grief in regular life stuff? Or does this mean Diabetes is bugging me so much I have built an unhealthy wall to mask the real feelings I have about all of this.

I fear that I will find out within the next week or two. With New Years coming I'll be forced to evaluate my pancreatic duties. I'll set myself subject to irrational goals and deep internal appraisal.

Whatever comes, right now I'm going to enjoy the nothingness that I feel and go find my joy in the eyes of my happy and content boys who are right this minute all huddled together playing a new video game.

It isn't always about diabetes, right? I guess I'm just questioning how I got it into the back seat...and the repercussions of it all. Maybe, just maybe...it is back there for the right reasons, and I have nothing to fear.

Because when it comes to the big D, I'd rather not know the REAL feelings I have lingering deep down in the recesses of my soul. They wouldn't be pretty. I know that for sure. In fact just thinking about it stirs up something, so I'll end now hoping to stuff it all back down.

I'm in the driver's seat now. Diabetes is stuck in the back. I just wish it would stop kicking the back of my seat. I really want to concentrate on the road ahead of me. The world is a beautiful landscape...if I keep diabetes behind me, it can't muck up the scenery.

The sunsets have never been so beautiful as they have the past couple weeks.  Is that a coincidence?  I just don't know.



Wednesday, December 28, 2011

A Diabetic Manifesto...

I love my Christmas tree... I light it. I enjoy it's silent cheer; it's proud glow. Perhaps, a memory of a 'perfect' childhood, at least, in my own imagination. The room is messy, but the tree makes it come to life. It brings a certain peace to my heart. It makes everything... 'perfect.' I probably won't take it down for a few more weeks.

Peace is a little hard to come by, these days... The worries of adulthood, and the insecurities of employment and finances, really take their toll... on one's joy, one's dreams, one's relationships, one's family, you name it. Still, I sit, and wonder... at the 'magic' of it all. When folks sort of stop paying attention to the "mess" in their lives, for a moment, and just stop for some peace.  

And peace, hope, growth, and prosperity is what I wish for all of you, this holiday season. I wish all of you to be BLESSED in one way, or another... And to make NO resolutions. 

NO RESOLUTIONS. Instead, look back upon the year, with bittersweetness; say goodbye to friendships that are parted, and welcome new ones... Say thanks for all the hardships, lessons, and opportunities life has awarded you, and for all the mistakes you have made. Especially, for all the mistakes you have made. Cheer on the challenge a new year will present, and be hopeful for what's to come.  

Be hopeful... 
  • That friends and family will embrace, love, and support their fellow diabetics through this hard and challenging journey, without recrimination, and judgment, but with education, and a listening ear. 
  • That diabetic patients receive the respect and dignity every person with a chronic illness DESERVES to be afforded, without gimmicks, media misinformation, doctors selling their profession for fame and a quick buck, and discrimination. 
  • That government, and employers, strive to learn, educate themselves, and accommodate diabetics and their needs, and realize that we are just as capable, and just as willing to do a good, and proper job. That we can be just as productive, and careful good citizens, as anyone else. 
  • That doctors will EDUCATE themselves, and not make insensitive comments or unfair comparisons,  uneducated assessments, guilt trip patients with the blame game, give uneducated guidelines, and endanger patients lives. That they become aware of the HUMAN EQUATION, and grow some bedside manners. 
  • That patients presenting diabetic symptoms will NOT be ignored until it's dangerously late, and they have developed irreversible complications.
  • That patients will be properly educated at diagnosis time about their disease, and ALL their treatment options, and not left wondering in the dark about what to do, or how to make adjustments, and NOT DENIED access to proper specialists, such as endocrinologists, certified diabetes educators, or dietitians, but be left with only limited options such gastric bypass for those who are overweight... either because of professional ego, or because of insurance restrictions.
  • That patients will not be diagnosed based on biases -- but that every person out there presenting diabetic symptoms be given COMPLETE testing to determine not just whether they have diabetes, but where their insulin production stands, and their type of diabetes, REGARDLESS of their age, or their weight, so that they can receive the PROPER CARE they need to manage their condition, and educate themselves without much danger, second guessing, grief, and confusion.
  • That patients will receive proper access to medicines, and NOT DENIED access to insulin, needles, or test strips. That patients be allowed to test as often as THEY deem necessary. It is THEIR right to be vigilant, and it is THEIR right to stay alive. Test strips might seem expensive, but they are not, in comparison to the costs of the complications of poorly controlled blood glucose levels.
  • That patients will receive proper access to any care they need, and any tools to management they need, including pumps and CGMs, and diabetes alert dogs, without exorbitant expenses, or insurance games; in fact, that insurance companies will one day not be necessary.
  • That diabetic research organizations devote enough resources and work into finding a true CURE, because we are not a lost cause once we have gotten diabetes... We are just as important as those they hope to help avoid the risk of getting diabetes. ALL of us deserve a TRUE cure. Not gimmicks. 
  • That together, we can tackle the challenges we face because of our many health concerns, and realize that we are all the same... Just folks wanting to be acknowledged, and heard; folks wanting to be UNDERSTOOD. 
This is what I long for, hope for, and work for... in the year 2012... It is my Diabetic Manifesto. If we work together, we can slowly turn the tide... Won't you join me? 

(I am sure glad that, in my culture, the holidays last a little longer... At least for now, I'll have a little more hope, and a little less mess.) 










Tuesday, December 27, 2011

My favorites

Christmas is my favorite.

So much so, I'm going to list off all of my favorites that went with it this year. And to add a little yin to my yang...I'm going to let you know some of my least favorites too!

Favorite Christmas meal: Prime rib, peas and carrots, baked potato all with a bit of creamy horseradish.

Least favorite Christmas meal: Is there such a thing? Actually, we had prawns Christmas Eve...which isn't my thing. But my sweet hubby BBQ'd up some chicken for me too. Spoiled! I am so so spoiled, and I know it!

Favorite dessert this Christmas: Yoyo cookies made by my friend Tracy at the cookie exchange. A ton of butter, a little lemon in the middle...NEW FAVORITE BABY!

Least favorite dessert: Anything with raisins in it. Lucky for me, nothing of this sort was offered to me this year!

Favorite present: My new camera given to me by the love of my life...but my Cricut , my Cuisinart and my laminator are close seconds! I better start getting my creative/crafty on!

Least favorite present: The one that I ordered and came missing pieces, and a missing lid of all things.

Favorite Christmas moment: Finding a note to Santa in L's stocking. It read: "Santa, you are one of my favorite people. From, L." And then there was an arrow, on the back it simply said, "Write." A pencil was taped to the card. Santa was kind enough to respond that it was quite a coincidence as L was one of Santa's favorite people too!

Least favorite Christmas moment: Realizing that giving our 16 year old an xbox 360 would mean many MANY spirited conversations about which video games were appropriate, and which were not. Seriously, am I the only mother in the world who won't allow the game Halo in the house? I may just be...but I stand by my decision. I don't care that Bobby, Jan, Marsha, Greg, Cindy and Peter have it!

Favorite Christmas quote: When asking B what his sugar was, he responded, "I don't know yet. There's a long line."

Least favorite Christmas quote: "This is the worst Christmas of my life!" Spoken by L when he found out his older brother accidentally erased his game cube game.

Favorite new Christmas game: Sour Apples to Apples. Super cute!

Least favorite Christmas game: Trouble. It is so misleading, masking itself as a simple child's game. When in fact it is the devils game itself! Nothing brings out frustration more than not getting a six after 5 rounds. I specifically remember fighting with my best friends Shannon and Ericka over this game when I was a kiddo. Interesting fact: My mother in law said they used to have almost the exact same game in Germany when she was a child. The title translated was, "People, don't get too mad."

Favorite Christmas song: Baby it's cold outside. (But the right people have to be singing it.)

Least favorite Christmas song: I don't know the names, but Holly on XM Radio seems to play a lot of them.

More than anything though, my favorite thing about Christmas is being with all the boys and my hubby with no alarms, no places to be and no worries about homework deadlines. Of course Diabetes has spent the holiday with us...but it hasn't had too many tantrums. We have quarantined it to the guest room. It only streaked through the house once, but we got it back into its room in quick Schuhmacher butt-kicking fashion!

Hope all of you had a wonderful Christmas, or an awesome Hanukkah!



 

Wednesday, December 21, 2011

Your Number One Diabetic Treatment Goal

Dear Friend,

I heard you were recently diagnosed with Type 2 Diabetes, and that you may have some mixed emotions right now (sadness, shock, anger, guilt, shame, denial, grief, fear, just to name a few...), and I just wanted to let you to know that it's OKAY to feel the way you do. Life, invariably, takes us through periods of transition, of growth, of personal reflections in which we must face, not just who we are, but our own mortality as well. This is a normal part of life: it's called the human equation. It can be frightening, to say the least... but you are NOT alone. No matter how "perfect" some of us humans may seem, we ALL go through this. Life plays no favorites.

No doubt you are already searching the internet left and right for all manner of information on how to best care for your diabetes, and may even have already developed a plan of action. If you are like most Type 2 patients, your doctor probably put you on a course of Glucophage/Metformin, without many other indications, and just sent you on your way. This is very typical. At least, here in America, most doctors really don't sit down with patients to find and discover what their needs are, what their BEST tools for diabetes management should be, what their individualized blood glucose goals should be, nor what their OVERALL TREATMENT GOAL should be.

I want to commend you for taking the initiative to take the upper hand in managing your condition. It takes guts to face a chronic health condition, and take a long hard look at ourselves, and what may need changing. With that in mind, I want to warn you... that while there are many voices of reason out here, in the internet, and many well meaning voices, there are also many confusing messages. Now, I'm not trying to say here, in any way, that you shouldn't do your own homework... oh, no! We would be in a hard place, as Type 2 Diabetics, without the internet. PLEASE DO YOUR HOMEWORK.

What I am trying to do, though, is put it all into a little perspective for you.  

You see, the voices of the internet are many... 

Some are naive, uneducated, patients... optimistic, and with their hopes misplaced. 
Some are well intentioned, go-getters, who may see the world as one of "black and white" solutions.
Some are from the "ignorance is bliss" bunch. They never, ever, question their doctor, or dietitian, ever.
Some are trying to sell you something -- a book, a diet, a supplement, an exercise regimen or way of life, etc.
Some are the naive, uneducated, misguided, optimistic patients, mentioned above, who have fallen for the ones who were trying to sell you something... 
Some are patients, who like you or I, started with little... and have now lived with this disease for many, many years. They have seen the good, the bad, the ugly, the unrealistic and unhelpful, and the scams... They are healthy, they live and thrive, WITH diabetes, and they are doing just fine. (Latch on to these people.) 

...and while they all have different agendas, they are ALL trying to tell you exactly what your doctor should have sat down, and told you: 
  • What your BEST tools for diabetes management should be;
  • What your individualized blood glucose goal should be; and
  • What your overall TREATMENT GOAL should be.
Now, we are ALL different... And I cannot, and will NOT pretend to tell you what your BEST tools should be, or what your individualized blood glucose goals should be. And NO ONE should, either. Your health is different than mine. You may have more challenging health hurdles to clear than I have, or you may not. And you should DEMAND to discuss this with your doctor, at length, based on your own research. As they say, your diabetic mile may vary. Your shoes, your trail, your journey. 

There is one thing, though... that I can UNEQUIVOCALLY tell you: What your treatment goal should be. 

Let's start by what your treatment goal is definitely NOT: 
  • Getting off of oral medications
  • Getting off of insulin or avoiding it
  • Losing weight
  • "Reversing" diabetes 
The first three are POTENTIAL symptoms of what your unequivocal, overall goal should be. The last one is a  fallacy, and a buzz word. One may potentially "reverse" some symptoms and complications of diabetes, but not the diabetes itself.  People claim there's much debate on this, but there really isn't... Just watch as this M.D. sidesteps the entire term, in this Q&A column: http://health.msn.com/health-topics/diabetes/taming-diabetes.  But I digress... 

We focus far too much on the pretending we can cure diabetes, especially by avoiding the "evils" of oral medications, and the "evils" of insulin, or the "evils of being overweight," to understand that this one goal far outweighs them all... 

That goal is GOOD GLUCOSE CONTROL.  

In your war on diabetes, THIS IS the goal. IT. IS. THE. GOAL. 

Do not lose perspective. Do not feel discouraged, and give up, if you have weight to lose, and you haven't lost all of it... 

Do not avoid seeking help, if you need it. While many medications have their downsides, and side effects, they also have some upsides, and they are not a shame or a failure, when needed. If after changing your lifestyle, diet, fitness regimen, eaten nothing but chia seeds for two weeks, ran marathons, etc, etc... you find that you still have blood glucose control issues... it's OKAY. Explore your treatment options with your doctor.

STOP FIGHTING THE WRONG BATTLE. 



We age, life passes by... This disease is progressive.  Should the heart patient feel bad for taking lithium? Should the cancer patient feel shame for needing chemotherapy? NO. Of course not! 

The enemy here is the heart disease, the cancer, the HIGH BLOOD SUGAR. Do not let yourself stay in a state of danger because you were pushing for the WRONG goals... 

 Remember... Your shoes, your trail, your journey. Your diabetic mile may vary... But your number one, overall, UNEQUIVOCAL, treatment goal... will NOT. 





Tuesday, December 20, 2011

He feels it.

As most of you know, J was diagnosed at 8 months old. When he was diagnosed he was so fragile the doctor wanted us to keep him between 200 and 300 for the first couple years. After that we inched down to 150-250. I think it was when he was 6, when we got him his first insulin pump, that we moved to keeping him in the 100's, and then at age 10 when we tried hard for low 100's.

You have to remember that insulin back when J was diagnosed was archaic. We had to give him his dinner insulin two hours before dinner. He had a long acting insulin called Lente, and later another called Ultra Lente.  Neither were supposed to peak...but both did with J. There was a lot to consider, and his safety came first. (L and B were put on pumps right away. They never knew the days of "keeping them in the 200's.")

Sooo...J has felt the repercussions of the "highs" since he could remember. I imagine he thought that is just the way he was always supposed to feel. I remember vividly having a conversation when he was in first grade...

"J, you are 400...don't you feel that you are high. Don't you feel awful?"

"No. I just feel normal, Mama.  This is the way I always feel!" And he happily skipped away.

Highs never affected my sweet boy...that is, until now.

I don't know how he does it, and I don't even know if this is the reason behind it all...but J keeps his blood sugars in such good control, I doubt I could do it myself. He is for sure one lucky duck as he is in the throes of puberty and generally that wreaks havoc on blood sugars. I suspect the havoc is in our future...but for now he is doing a pretty darn good job. That aside...he now feels when he is high.

In fact if he is above 250, he feels downright miserable. There has been a couple times in the last few weeks where he refused to eat dinner because he was in the 200's and didn't feel right.

There has been a shift, and as much as I hate to see him miserable when those 200's come...I'm thankful for his newfound awareness.

Not only that, I am thankful for the insulin pump that makes it so easy for him to bolus. I am thankful for the tools that lie within it to make controlling blood sugars amid puberty hormonal tidal waves a bit less impossible.

I am thankful that my son feels his lows...and now feels his highs.

My knowledge of this disease evolves every day. What has become very clear to me is sensitivities change with time. L couldn't feel a low to save his life when he was 3. Now he does. Now he can sniff out a low a mile away. Nothing ever stays the same with diabetes. There is always hope for a better day.

There is always hope.

There is always uncertainty.

There is always something new around the corner.

There is always change.

And sometimes...whether it be hard work or just plain luck...that change is for the better.

Sunday, December 18, 2011

Do you hear what I hear?

We've had a lot of hiccups in the diabetes arena the past twelve months. Smoothness seems like a bit of a myth these days while "incidents" have taken over our landscape.

Seriously, the kindest way to explain away the year is to simply say it has been "interesting." The boys have grown a foot each, we've used more blood ketone strips in the past two months alone than we have in the past 13 years... and to top it off each and every Sunday has yielded only mountains and valleys. Church falls during lunch hour this year. I've failed miserably trying to control their numbers while they weathered missing lunch altogether.

It isn't fair to say we have been failing...but if not failing, we certainly have done a ton of experimenting, and hopefully have gained enough knowledge because of it to make all the collateral heartache worth it.

Despite the 2011 crazies...I can't help but feel an echo of hopefulness in the air.

Somewhere the drum of hope beats. I feel its vibrations in my soul.

Everything is going to be alright.

I can't go back in time and fix all the gaffes. But I can look forward with optimism to our future.

Because here's the thing...we have survived. And more than that...we have grown stronger. Diabetes has thrown us so many curve balls, but yet we haven't stopped swinging. We haven't given up. We have learned how to handle the worst of situations on our own. We have learned not to take the good numbers for granted. We have learned that when things go our way it isn't a time to go into autopilot...on the contrary it is time to work hard to stay the course.

Bad numbers are a lot of work. Good numbers are a lot of work. Diabetes is a lot of work. And here we are still going strong. Even the most recent of our wounds have healed and we bear our battle scars proudly. I look at my boys and they beam with happiness. Isn't that a win?

Some days I hear the echoes of hope ever so faintly. It is the last of the echoes so far in the distance, I have a hard times acknowledging they are there.

But other days...like today...I feel like the echoes roll like thunder over and over again. I am inspired by the season. I am wrapped up in the blessings of our diabetic life. My boys are weathering the storm like the champions they are. I am one proud mother.

They can do this.

I can do this.

One day year at a time.

Friday, December 16, 2011

Don't do it.

When your husband asks you to stay up later than planned to watch a show, and you KNOW he is going to fall asleep 20 minutes in and you'll be hooked and end up watching it alone...don't do it. (Just go to bed. Trust me. Choose sleep.)

When you are staying up later than planned and you think you will check sugars at a later time, rather than your regular time...don't do it. (You'll be even more tired than usual, and if things have gone south you'll be up for another hour troubleshooting.)

If you are dizzy from exhaustion and check your child and he is low...you might think to give him a new kind of juice he has never tried before...don't do it. (He'll try to spit it out because he's not used to the taste.)

If you give a child juice he never had and he refuses to drink it in his unconscious state...and you think you can coerce him into drinking it all within a reasonable time period...you would be wrong. Don't do it. (Try 20 minutes of begging him to drink when he would have eaten a banana in 20 seconds.)

If you have a child who's pump is alarming, you may try a shortcut to fix the problem. Don't do it. (It will never be as easy as taking the set off and putting it back on. The set and reservoir should always be changed out completely when it says no delivery.)

If you go to bed with looming problems, you might think it is a brilliant idea to set your spouse's alarm for him to get up in an hour's time to check on said issues. Don't do it. (He'll just think he set it on accident and turn it off.)

If you wake up at 5:00am and ask your husband if he did the check and he said no...don' t send him to check out the aftermath of your decisions. Just don't. (He'll just make you get up anyway to help.)

If you think sending your husband to fix the problems without telling him everything that happened the night before is a good idea, and he sees a no delivery...his first instinct will be to try a shortcut too. When ketones are involved...don't do it. (Tell him a detailed account of everything. I don't care if you are mentally and physically dying from exhaustion.)

When your child comes in and tells you that Dad says his pump is officially broken and you ask if his father changed everything out and he says no and you think you are ready to strangle someone while you are in your zombie-like coma...

Don't do it.

Well, try REALLY hard not to anyway.

I am sad to say, these are all lessons I learned the hard way within the last 10 hours. I am passing my newly discovered wisdom onto you with the hopes that you won't make the same idiotic mistakes I did.

What will I learn in the next 10 hour stretch?

If you are trying to imagine...

Don't do it.

Learn from my mistakes people. Learn. From. My. Mistakes.

Wednesday, December 14, 2011

When Diabetics Become Bullies

The things you say, and do, have an effect on people. This one should be a "no brainer," right?

Well, not quite.

At least... not quite for folks who see you as "something to crusade against." A faceless mass, or a faceless evil, or villain, that it's okay to heckle, taunt, or verbally assault for the "benefit of humanity, at large," whatever that might be. And that, I'm afraid, is what the internet has done to Type 2 Diabetes and obesity. Coupled with anonymity, the internet has sort of given a voice to the uneducated, the predators and snake oil pushing charlatans, the frustrated, and yes, even the downright abusive bullies among us.

Quite honestly, it is NOT easy for me to be active online when people left and right are trying to sell me books, supplements, Chinese herbs, or whatever the latest craze is to "100% cure" my Diabetes. (Diabetes, of course, has no cure... and in my opinion, this is dangerous and should be against the law. But alas, the FDA doesn't give a rat's ass.) But it's even more difficult when you THINK you have found a "haven" from the mean-spiritedness of the world in a Diabetes page, group, forum, or social community.

As a newly diagnosed person... you may think others are kindred spirits. I am sorry to say, many times they are not... and we need to learn to be emotionally mature, and confident within ourselves, to be able to handle these situations (which, of course, we are not, when we are newly diagnosed.)

Just yesterday, a well known diabetes site asked the question "Medicare announces that it will cover weight-loss counseling for the obese, but critics argue it will make little difference. Who's right?"

I'd love to say polite debate ensued... But it was mostly a "blame the fat, lazy person" tirade.
"Do we really think "counseling" will help the obese? Really? If you're obese, it's due to a lack of discpline and complete laziness. NO EXCEPTIONS TO THIS RULE!!!" 
"I don't believe any type of counseling will work for people over weight. You either truly want to loose weight or you don't, and if banding your stomach doesn't work then counseling isn't either." 
"Can you honestly tell me that people don't know eating McDonald's every day isn't a good idea?!" 
" Weight loss is really self control & few people really have it..."
People are raging at many things; things they don't understand, or think they understand. It really reminds me of the Cold War, and the "Red Scare." We just have these simplistic "notions" of what's the enemy, and what's "right," and what the tv tells us is wrong, and bad... and we run with them. We think, "it's okay, these are 'faceless people' on the internet... We can hate them. We can abuse them." It's easy. Doing these things doesn't entail you to actually WORK at being a HUMAN BEING; to actually be an ADULT, and use your empathy skills. 

Doing these things keeps you from seeing people as mothers, fathers, brothers, sisters, spouses, other people's loved ones, other people's children. 

And worse yet, we may think "these people have taken from me, and my loved one...," and we fail to see how the system has failed EVERYONE, and not just us. Instead, what we are doing is PROJECTING our own bitterness at others. We have developed Diabetic Penis Envy. 

I am sorry.  

I have to call it something funny. I have to call it something funny, or else I'll cry.  

I'll cry when I see fellow diabetics verbally assaulting other diabetics because they are HUMAN and STRUGGLING, and they are brave enough to share their broken pieces with the world. I'll cry when I see mothers attacking other mothers over how they care for their child... I'll cry when I see someone putting down another person's personal loss "because they had it coming to them... they were Type 2." 

I'll cry over your bitterness. I'll cry because I know this disease has blinded you. It has blinded your heart. You either found a little private island in the middle of the sea, and wonder why no one else has gotten there, OR you are exiled in the desert, with nothing but mirages in sight, and no respite. You either judge for attention, or want to be the victim, for attention.

My heart goes out to you because I know it's not about me. No matter how much you try to make it be about me, or about any other type of diabetic there is... it's not. It's not a war of types. It's about YOU. It's a war WITH YOU. And it shows when you write jokes putting down folks, when you character assassinate people who may be struggling with their control, or their weight, or their kids, or when you try to make it sound like your type or your way is the paradigm of good health. It's not. We all need to work on something. 

If we want to help unity in our community... if we want to help diabetics out of the hole of shame and fear they may have... And help them know it's OKAY to be them... then we need to help GUIDE and SHEPHERD them... I would like to ASK two things: 
  • I would like for communities to develop a ZERO tolerance toward judgmentalism, abuse, abusive language, and bullying of anyone, but especially obese persons and persons with Type 2 Diabetes, including warning folks, removing their comments, posting discussions redirecting attitudes and educating, and up to, and including banning; AND
  • I'd like especially abusive folks to be directed to counseling. We NEED to be reminded that we need help. If it's 2011, and we are adults, and we are still bullying other adults, especially ones with a chronic illness, we OWE it to that person to let them know they NEED COUNSELING. And their bullying behaviors will NOT be tolerated. It is, quite frankly, DISGUSTING. 
The First Amendment is for the GOVERNMENT to not invade our freedom of speech; it is not for a community to allow people to bully other people. EVER. Directly or indirectly. Until this is fixed, you will see many people join... and then fall off, and not participate. It gets old. 

Don't just call for change in our communities... Help ENFORCE the change; BE the change.

And yes, friend... if you read this... and you find yourself a little bit bitter... It's okay. I'm often, a little bit bitter too. 

I add this sort of cruel, and yet "funny," video... as an apt comparison in 'reactions' to my "gift" of Diabetes. 



Oh... and by the way... I forgive you. 








Frosty meets Meri's brain.

(To be sung to the tune of Frosty the Snowman. Bear with me if it is impossible to follow. You are a trooper for giving it a try!)

Meri the blogger, has a very swelly brain
It doesn't sleep at night and it lights up bright
When the boys eat candy canes.

Meri's swelly brain, is a fairy tale they say
but it sees the lows and the children know
it's going to blow up one day.

There must have been some worry in that
pile of strips she found
For when she showed it to her head
Her brain made alarming sounds.

O, Meri's swelly brain
was alive as it could be,
It could change a set and have bolus regret
just the same as you and me.

Checkity check check
Checkity check check
Look at that brain go!

Checkity check check
Checkity check check
"Give a banana for that low!"

Meri's swelly brain
Knew it couldn't continue this way
So it said "lets blog and
we'll oil those cogs
Before you're sent away."

Running to the keyboard
with meter history in her hand
She typed up her hopes and
trashed those mopes, saying
Yes, I think I can!

She wrote every worry down
and made the heartache stop.
And only paused to breathe when she
realized her brain didn't pop.

For Meri's swelly brain
comments made all the bad go away
They say she gave things a try,
now don't you cry
tomorrows another day!

Checkity check check
Checkity check check
Look at that brain go!

Checkity check check
Checkity check check
Careful, it might blow!

Monday, December 12, 2011

Total eclipse of the blood sugars.

Was it the lunar eclipse? Was it diabetes mixing things up just to keep me on my toes?

Whatever it was...L had been low for three days straight with no relief in sight.

There was no visible sign of illness. There was nothing more than a normal week...and a normal kid...with his normal diet...with his normal everything.

And suddenly he can't stay above 80.

I'm not 100% sure how I am still alive this morning. L's blood sugars have given me enough heart attacks the past few days to certainly stop this whole "heart beating" thing I've got going.

No kidding, more 40's than I have seen on that monitor all year long.

Temp basals. stuffing food and juice constantly. There is no answer.

I have a few close friends that within the last couple weeks have experienced the same phenomenon with their children. So many, that I asked an adult PWD at church if she has been experiencing lows too.

(I was seriously convinced it was the moon people!)

The answer was no. All was "normal" in her neck of the woods.

But now that I think about it, L does seem taller...maybe a hair bit leaner.

Maybe he just ended a growth spurt.

Maybe he was battling some internal tummy issue.

Maybe a million things.

But today he woke up 202. And before I could stop myself, I sighed a giant sigh of relief. Seriously, you know you have been battling lows too long when a 202 makes you do a happy dance.

I'm hoping this means things will calm down today...and I'm especially hoping I don't see another 40 in, well, forever.

A dear sweet friend posted this quote on Facebook today:

"Believe in fresh starts and new beginnings. The capacity for hope is the most significant fact of life. It provides human beings with a sense of destination and the energy to get started."

Today, my hope and renewed energy lies in that 202. With a life as crazy as ours...sometimes hope is found in the most unlikely of places.

Thursday, December 8, 2011

Yesterday, it flowed.

If I had a penny for every blog post I typed through tears...

well...

I'd have a lot of pennies.

I'm learning things about myself that I don't like. It's like there are these inner issues that lurk and then jump out to consume me at the most unlikely of moments.

Yesterday was one of those moments.

L called me from school 7 times between 8:30 and 11:50. He is starting this manic thing. He checks his sugars ALL the time for reasons I still don't 100% understand. He started out high the minute he walked into the classroom and gave himself extra insulin per the wizard on his pump. He called later to tell me he felt low, numerous times in fact. At one point he was 250 panicking that he would be low any minute. Snack time was in 15 minutes so I asked him to check again then and see what the number is before we treated.

"But by then I'll be like 105!" He says.

"That will be Ok." I say.

15 minutes later more drama. He calls to say he is 570. There is NO WAY he is 570. Wash your hands and check again...during which time he put down the phone and I heard an entire conversation between the nurse, (who comes 1 morning a week,) and the teacher about L and where he puts his test strips. He was given a sharps container by the nurse to put his strips in at the beginning of the year. He is throwing all his trash in there and tried to empty it out in the class garbage can today. I guess some of those strips made it onto the floor.

I'm cringing while I am listening to this. L shouldn't be touching that container. Why the long conversation...why not ask me to take care of it??? L forgot about me...I heard many conversations about class work and the handballs.

Finally I hear a beep and Luke exclaim, "SHOCKAPRISING!"

He picked up the phone to call me and realized I was still there.

He was not 570. He was 77.

He called three times after in the next 60 minutes. He was 75, then 71 and then 63. He was BESIDE himself that he wasn't going up. I told him to drink one more juice and to meet me in the office, I was coming to get him.

When I got to the office I looked at the secretary who was smirking. "Is he driving you crazy?" I asked.

"No." She says. "He asked for us to get him a juice box just in case."

I looked over at him and he was clutching a Capri Sun.

The other secretary brought up the test strips as they were deposited in a bag and brought back to the office with the words, Hazardous Waste written in sharpie. What was she supposed to do with the bag? I think this is the point that I lost it. The secretaries called in his teacher to discuss the strips and the L's speech therapist joined in for what made for good dramatic effect.

It is kinda all a blur but I think I went on a 20 minute rant about how L shouldn't be touching the sharps container, and that he should just tell me when it needs to be emptied and "I" will take care of it.

"Should he put the container in his backpack to bring home?" His teacher asked.

"No...again...he should never pick it up. I will take care of it!"

Then the conversation about L's day began and I could feel myself lifting off. Tears welled in my eyes as I spoke about L's constant calling and his worry about every number good or bad.

I remember them saying things like, "Maybe you should call his doctor." And, "do you want to take this conversation somewhere else, the other children in here are listening." "I'm sorry, I asked L to call," and "I thought he was just being responsible."

It wasn't so much what they said but the look on their faces. I must have been pretty wild eyed. They clearly thought I was losing it.

And looking back...I was.

Trying to sort through my feelings today I had an epiphany. I am a Closet Motherbetic. L's teacher last year made such a huge deal out of every little thing that happened that now I have this paranoia that this year's teacher is constantly judging... and sighing...and saying, "not again, L," too.

Every phone call yesterday killed me, not because of the actual calling...but because it was interfering with his classroom. I thought FOR SURE his teacher was exasperated with him, and me.

Turns out she wasn't. (Well...she may be now.)

I feel awful on so many levels I can't even get there emotionally.

I feel awful that the numbers are effecting L. Either physically or mentally.

I feel bad that I automatically assumed L's teacher was frustrated with him.

I feel awful that I want his diabetes to be quiet at school. Diabetes is never quiet. I'm pretty sure that I think the more distraction diabetes is...the more it reflects poorly on me as a mother.

OK, I'm more than pretty sure.

Letting others see into our world...letting others SEE the numbers....it kills me.

I can try my best all day long and those numbers won't always reflect that. I have so much guilt that I can't make them perfect. It is like a secret shame that I carry around with me. Inside I know I can't do better than my best. Logically I KNOW that. But emotionally...if I am honest...my best isn't the best I want it to be. I want to be best-er.

I know I am doing better than I think I am. The A1C's tell me so. But when my son calls with a 400...and his teacher is there in the background...well my world comes crashing down every time.

And usually I pretend it doesn't.

Until days like today come along and all my anger...all my sadness...all my guilt...all my pain gets brought to the surface.

And I cry hard.

I try so hard to make diabetes seem like no big deal around here.

And yet it is.

It really. Really. Really. Is.

Ebbs and flows...

Yesterday, it flowed.

Wednesday, December 7, 2011

Reenactment: "Oh no you didn't!"

Scene: Sitting on the couch in the living room waiting for my sister in law to pick up the boys. (My mother in law makes them breakfast every Wednesday and then brings them to school. Oh yeah...I'm spoiled!)

J: Squirming in the cushion, "Ow. My set hurts." (He had just changed his set 30 minutes before.)

Me: "Do you want to change it quick before Lisa gets here?"

J: Shock and Awe mode, "See...there! Right there! You would never catch a person with diabetes EVER saying that."

Me: "Saying what? Do you want to change your set?"

J: "Of course that. And of course I don't. If you had diabetes you would be embarrassed you said that."

Me: "But if it hurts..."

J: "Whoa! You don't have diabetes, you don't get it."

Me: "True. But my brain says if it is going to hurt all day, isn't it better to change it quick and have it hurt for just a second...you know, rather than all day."

J: "Mom, it only hurts when I put pressure on it, and what you are forgetting is that I'm not just a person with diabetes, I'm a 'teenager' with diabetes. Maybe when I'm an adult I will answer differently, but as a teenager I would have to say you have no idea how offensive that question is."

Me: "Because I'm asking you if you would like to poke yourself again, or because you are just too lazy to put a new set in."

J: "Both of those. Maybe you do get it."

Me: "Offensive, really? To you as a teenager, or you as a diabetic?"

J: "I'm not really sure...it's all one thing to me right now. All I can tell you is if you ask me any questions regarding extra work in my diabetes care, the answer for the next few years at least...if I have a choice...will be no, and I'm too lazy."

Me: "Are there any other offensive things I say that I should know about. You know...since I'm not a diabetic..."

J: "The only giant one I can think of right now is that one there. You say it ALL the time."

Me: "Hold the phone, I RARELY ask you if you want to change your set!"

J: "If it hurts you do, if you had diabetes you wouldn't even think to ask that."

Me: "I may not have diabetes, but I'm a sympathizer."

J: "I know. It is ok. Just know that if you ever ask me if I "WANT" to change my set...the answer to that one will always be no."

Me: "Loud and clear son...loud and clear."

Tuesday, December 6, 2011

The Greatest Lesson You Will Ever Learn

I don't recall exactly how I got there...

But I think it was just one of those "I'm really unhappy with my body, so I'm just going to go on another diet," kind of moments. However it happened, I had been referred to a nutritionist, or dietitian, or whatever the heck she was, by my Primary Care Provider (PCP) at that time. (My PCP... a man who never cared to talk much about certain things. Including, telling me my blood sugar was high.) 

I sat there, waiting in an office... in the usual weirdness of waiting for one of these folks. Fake plastic foods lining wall to wall shelving, and giant tomes and texts which I am not entirely sure had ever been read. This office was the size of a small bathroom, sterile, and with dark wood paneling to boot. A large, round table, took up most of the room, while a cluttered desk sat at it's opposite. 

"So, what exactly is it that you want?" -- says the woman... doctor, who? I am not sure. She's wearing a white lab coat, and it's making me rather uncomfortable. I thought this woman was just going to help me find a diet plan... why is she being so curt? And why the heck is she wearing a lab coat? You don't need a lab coat to write a frigging diet plan!!! Rather shocked, I explain to Doctor Who that I want to lose weight, that I am not happy with my body, and it's time I got things figured out, with a little help. 

Doctor Who stops to take a very long, stern, look at me. She demands to know what my life is like, and what I do. Of course, at the time (2002), I was in employment limbo -- much like I am now. I lived with a large, religious family, active in the local college campus community, and I minded their kids in exchange for housing. I lived in their basement. Their dark, dank, gloomy, depression fit inducing, basement. I also worked a minimum wage job, with grueling physical labor, and even more tedious hours. I was at great odds with myself, and with my faith, and to top it off, the family and church I belonged to at that time were extremely controlling, and extremely judgmental. One of those types of churches that need to know and control every single aspect of your life, from what to study, to whom to marry. How I got to be in that state, however, is a story for another day.

"I am NOT giving you a diet. You don't need another diet," said Doctor Who, in her Indian accent... really without knowing much about me. "Then...? What am I supposed to do? I mean, I AM paying to be here, after all..."  Her features soften, only for a moment, just enough to tell me that I have an eating disorder.  "A what??" ... "Yes, an eating disorder. You don't need another diet, and I'm not going to give it to you." 

Stunned, I just sat there.  I'm nowhere near skinny enough to have an eating disorder; in fact, I'm quite overweight, even obese. Morbidly obese. (By the way, thanks for that, Polycystic Ovarian Syndrome.) 

She hastily draws up a chart ...  
Explains to me I am living in a vicious cycle, and gives me four rules.  
  1. Eat only when you are physically hungry.
  2. Eat ANYTHING you want.  Anything at all.
  3. Eat only until you are satisfied, not full. 
  4. DO NOT SKIP MEALS. 
She then asks that I buy the book Breaking Free from Compulsive Eating, by Geneen Roth, and sends me on my way, though not before telling me that "... but even that won't work, because you're too busy right now, to focus, and need to wait until you're at a better place to make some changes." 

Oh. My. God. Who the hell does Doctor Who think she is? I *payed* her to do what she went to college to do... GIVE ME A DIET PLAN.  And instead, she gives me a frigging book review, tells ME that *I* have an eating disorder, and spits me out of her office, just like that! How dare she?!?! &$^#^%$@!!

Of course... She was right.  She was a total bitch about it, but she was right.  

Through much tracking, and tracing, I eventually found the book... because of course, it wasn't an easy off-the-shelf kind of book, either. It was an old 80's book, and it sat on my shelf gathering dust for a good while before I decided to finally crack it open, sometimes just chancing upon segments, and paragraphs, before having the courage to actually read it cover to cover. 

Now, this is NOT one of those moments where I tell you I've lost a gazillion pounds (which, at times, I have...), and Oprah comes and finds me, and hosts me on her show... or Dr. Oz... or whatever other idiot flavor of the month happens to be. I am still fat. I still binge. I still get up, gather up the pieces of ME, and keep going.  

This is NOT the time when I tell you that that was the most inspirational book of my life; it wasn't. In fact, it's probably one of the cheesiest books I've ever read (and please, never read it while drinking anything... much less soda of any kind).  

But it is the time when I will tell you that I learned what was probably the MOST important lesson of my life... and what should probably be the most important lesson of YOUR life. 

NEVER ABANDON YOURSELF. 

It doesn't mean you are perfect, and will always follow the rules. It doesn't mean you are only relying on yourself. It doesn't mean you won't ever become depressed, nor sad... nor compulsive. It doesn't mean that you need to find 20,000 inspirational post-it notes for your bathroom, either.  

What it does mean... is that whatever you experience in life, or whatever it is you choose to do... BE THERE with yourself. Actively keep yourself company. Be conscious and aware. Acknowledge yourself. 

Acknowledge and OBSERVE from a non-judgmental place the rhythms and intricacies of your emotions... just observe them. No need to judge them. Turn off the TV, and step away from the electronic gadget.  

Do not run away into the occult recesses of your mind while you... ______________. (Enter favored compulsive behavior here, including, not taking care of one's Diabetes.) Acknowledge what it is you need, and seek, and GIVE it to yourself with the REAL DEAL. Not a substitute. 

Know that whatever it is we do, we do it for a reason... seek to LEARN those reasons. 

Allow yourself to be human, and just learn. Learn from the moment. Learn about YOU. Take life... one second at a time. Life will never be easier, or less complicated, like Dr. Who suggested, so just start TODAY. Start with one moment. One action. 

Consider the power of one snowflake... one snowflake every second can lead to a perfect Winter storm. This is YOUR storm. 





Monday, December 5, 2011

So many "things"

I'm surprised to say that the past few days I've gone through a bit of blogger withdrawals. I missed this place, but I know I needed a break to clear my head. It can be overwhelming to really look at your life and take stock in your feelings. It is freeing, but facing the realities of Our Diabetic Life isn't always rainbows and unicorns.

Not only that, as I look outward my heart is heavy with the burdens that you carry. Parents of children with diabetes, people with diabetes, and people that have nothing whatsoever to do with diabetes. There is a lot of heartache out there. Conflict just seems to be a way of life these days.

I think it is so important to remember that no one leads a perfect life. Everyone has their thing. Recently though, I can't help but feel like everyone has their thing...and another thing too. And even some have more than two things. I look around at my friends and I know their things. I look at the strangers that swarm around me and I know deep down in my heart that they are struggling with a thing or two, too.

SO many "things" on our plates.

The holidays have a tendency to magnify our burdens, either that or they throw our burdens on the back burner entirely. How the holidays can have two completely opposite effects is beyond me. I don't know how much control we have over the different circumstances, but I know we have some.

Many in our community try hard to look their blessings straight in the eye. Others are overwhelmed in their sphere...some are heartbroken, some are bitter, some are lost. My heart aches for each and every one. I'm not judging anyone. I have been in those dark places more than I care to admit...but I want to reach out to those who may be having a hard time right now and let them know that they won't last forever.

Good times are around the corner. Basal rates that are off, the morning spike to 400, the honeymoon, the wonky nighttime numbers, the nights with not more than an hour sleep...it isn't forever. I know, (boy do I ever know,) that when we are in the middle of despair it is hard to see that any good can be juiced out of our situation.

But if you keep working at things, and doing your best...miracles happen. And not just during Christmas.

I want to personally tell you that I have witnessed amazing miracles in my life. I have been at the bottom of the pit of despair...with a few lions in the pit with me...and I have made it out.

I did it by going one day at a time. I did it by asking for help. I did it by calling my endo. I did it by calling my family. Sometimes I did it by just putting one foot in front of another. I know that sometimes, just going through the motions is all we can do. I keep saying it over and over but I feel so strongly that we are all trying too hard to bear our burdens alone...piling them all onto our own shoulders.

The problem with that is our shoulders are human. Not superhuman.

On the flip side, asking for help is awesome, but offering help to others is even more awesome. I'm going to try to be more sympathetic to others problems. I'm really good at saying to myself, "I'm sorry you were up all night with a teething child, but try being up all night with a diabetic child who is vomiting with large ketones."

Comparing helps no one. Comparing makes me a bitter person. More than anything I want people to understand, and feel empathy for our family. I think others who have different "things" want the same as me, and maybe, just maybe, if I show them a bit more compassion...they will show a bit more to me.

Compassion is not a one way street. If you love someone, a lot of times they can't help but love you back.

There is more to life than the numbers at the end of the three second countdown.

There just has to be.

If we look hard enough, we will find our joy. And in the process we can hopefully bring others along on the joyride with us. Especially but not limited to this time of year.

Thursday, December 1, 2011

Meet the Family/Contact Me

If you ever want to say hello, or need a listening ear...drop me an email. I'm always around!


Meet the family!

I need to update this page, but I can't bring myself to make Ryan's bio past tense. Someday soon, when I'm ready.


Me/Meri
I was born and raised in the same Northern California town that my husband and I raise the boys in today.  I have 5 brothers and sisters, which lends to my fighting nature.  My hubby and I married young, brilliant decision!  We are more in love today than ever...(trust me...I know how lucky I am.)  I've always loved to write.  When I was in 3rd grade I remember my writing assignments being 20 pages long.  When it comes to my feelings, I am always honest to my boys, my husband, and to you.  I have very strong opinions, but I know that everyone else has them too...so I try to always be fair.  My family is everything.  If you are my friend, than you are part of that family too.  Our Diabetic Life is my home away from home.  I come here to release all the emotions I keep stored in my swelly brain.  I come here to find others who "get it."  Thank you for being one of those people!

Ryan
He asked me to marry him in his bedroom with Boston playing in the background.  I had to say yes, right?  He tells me he loves me everyday.  He thinks I'm beautiful...even on my worst days.  He helps, he loves, he is my best friend.  He also has a paying job or something, but excels most at his really important un-paying jobs of being a husband and a father.

M
He is a teenager through and through.  He is now contemplating college, and the rest of his life.  He has the hugest heart, the hugest smile and the smallest amount of spite of anyone I know.  He was seriously born this way.  I take no responsibility for his gentle nature.  He plays the saxophone, and is in some serious honors classes at school, all of which I tried to talk him out of.  He rebels by taking them anyway. 

J
Also a teenager, even though he is new to the fray.  His voice cracks, he has the greatest dimple on his left cheek, and he is too smart for his own good.  He is a ferocious reader.  This guy was diagnosed at 8 months old and hasn't woken up one morning questioning why he has been given this Diabetic Life.  He is now on his own for the most part on the diabetes front.  I check his meter to make sure he tests, but I depend on his A1C and his pump print outs to confirm he is doing what he should.  And he does.  He is my hero.

B
Was born a 10 pound 4 oz., 24 inch long bundle of happiness.  He loves hard, he cries hard, he plays hard.  When he was diagnosed at 5 years old he had no complaints.  In fact, before he was diagnosed he used to cry that he wanted diabetes too, so he could have a pump.  "They glow in the dark!"  he said.  "Lalalalalala" I said, as I plugged my ears and begged him not to say that anymore.   He is a loud and proud T1 Diabetic.  He is smart, he is fun...he leans in, head first, for hugs...and he generous.  I'm going  to keep him.

L
L was diagnosed at 2 years old.  He has been a miracle since the day we found out he was coming into this world.  He says the funniest, most interesting things, and is the inventor of the word, "Shockaprising!"  He is my squishy baby and I fear I will treat him as such for the rest of his life.  He has just hit a big growth spurt.  Make it stop.  Please, make it stop!











Wednesday, November 30, 2011

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

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

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

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

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

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

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

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

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

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

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

* There are no days off with diabetes.

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

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

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

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

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

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

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

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

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

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

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

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

Here's to a cure.

Tuesday, November 29, 2011

I reject the reality, and substitute my own.

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

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

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

But in my own world, I got this covered.

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

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

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

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

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

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

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

But in my own world, we live.

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

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

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

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

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

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

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

I like my world better than the real one.

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

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

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

 
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