Tuesday, November 15, 2011

CBS 5... Shame On You!

Its absolutely crazy to me how much I have come to love my TV.


Kinda embarrassing, since when I was working  I used to make fun of my stay at home mom friends who made such a big deal over the programs they watched on TV.  But alas, I LOVE my shows.  I even watch the news.  I didn't use to, but I actually really enjoy the local CBS 5 news.... they have some great anchors and I like their "keeping it real" approach to reporting.

So, yesterday, on World Diabetes Day I was happy to see a portion about Diabetes.  There had been A TON of breast cancer stories during Pink October... and I wondered if Diabetes would even get a mention come November.

Unfortunately after the very short and to the point blip that diabetes received I was frustrated and angry.  So, what else could we do, but write a letter?  Sugar Daddy actually did the honors, and we sent it off to the published email for the general manager of the station.

To Whom It May Concern:

Our 5-year-old son is a type 1 diabetic, so at first we were pleased to see some mention of diabetes and the International Diabetes Federation on this “World Diabetes Day.”  However, we take significant issue with how the story was reported, as would most type 1 diabetics themselves.

The segment copy as it was read stated that “most future cases are preventable because they will be tied to weight gain and not getting enough exercise.”  This may be true for type 2 diabetes, but it is NOT true for type 1.  Type 1 diabetes is an auto-immune disorder that affects both children and adults; diet and exercise have no bearing whatsoever on a person developing this variant of the disease.  It is not preventable; it is only treatable by administration of insulin.

The segment as it aired made no distinction between type 1 and type 2 when making this statement, thus perpetuating the misinformation that surrounds type 1 diabetes.  This misinformation not only is frustrating to those of us who must continually explain or defend how we raise our children, but it also, we believe, slows our society’s advancement toward better treatments, and, eventually, a cure for this disease.

If you wish to learn more, please visit our blog at http://www.sugarkidsblog.com.  It contains information about type 1 diabetes, as well as other resources made available by the greater “diabetes online community.”

On behalf of the larger community of parents of children with type 1 and adults with type 1, we appreciate your attention to detail when reporting on such matters.

We closed the letter with our contact information.

I sincerely hope they read our letter.  I sincerely hope they will take the time to learn more about BOTH types of diabetes, before they decide to report on it again.  Because after all... for a news station that prides itself on "Telling It Like It Is" they sure dropped the ball on this story!

Monday, November 14, 2011

Happy World Diabetes Day!

Dr. Frederick Banting
11/14/1891 - 2/21/41
Did you know that today is World Diabetes Day? Why today? November 14th was chosen in honor of Dr. Frederick Banting's birthday. Dr. Banting discovered insulin in 1922. The discovery of insulin remains one of the most incredible medical breakthroughs of all time. Prior to insulin, a diagnosis of Type 1 Diabetes was a death sentence. Please do not be mistaken...insulin is not a cure, but without insulin, my son will die.

 Thank you, Dr Banting and HAPPY WORLD DIABETES DAY!

In honor of World Diabetes Day, my friend Hallie over at The Princess and the Pump is doing and AWESOME giveaway.  Head over there to enter!


Saturday, November 12, 2011

Having our cake... and loving it too!

Now that I have recovered from Wednesday nights low of 26, life with diabetes has mostly returned back to "normal".  I mean, is it ever totally normal?  No, of course not.  But the numbers have mostly leveled back off.

The latter part of the weeks focus shifted more to our new found gluten free lifestyle

For Sugar Boy's di-aversary dinner he requested my home made mac n' cheese, chicken strips and chocolate cake for dessert.  I have not made my mac n' cheese since we have gone GF.  I knew the Pasta wouldn't be a problem.  We have found quinoa pasta... which is really good!  I honestly can't tell the difference between it and "regular" white wheat pasta.  But the cheese sauce?  I thicken it with FLOUR!  I had ordered some Jules Gluten Free Flour, but had not yet used it and was not sure it would thicken a sauce like regular wheat flour would. 

So, I cooked up a pound of the quinoa pasta, drained it, and turned to the pan where I would make the sauce.  Melted the butter, and with baited breath added the flour.  It was working!!!!  Added the milk and whisked and VOILA it got thick!  HUGE sigh of relief!  The mac n' cheese was FABULOUS (if I do say so for myself) and Sugar Boy was thrilled with his special dinner. 

I had picked up a Betty Crocker gluten free chocolate cake mix earlier in the week, anticipating he would ask for that for dessert.  BUT... when I was at Whole Foods picking up the quinoa pasta I scoped out the gluten free case and found some BEAUTIFUL chocolate cupcakes.  So I decided to cut a corner and pick those up instead of making the cake at home.  I am so glad I did!  They were wonderful!!! 

While there I also picked up some Udi's GF bread and it is really good too.

Here's the thing.  Anyone reading this who has already been doing the gluten free thing (either for medical reasons as we are, or simply by personal choice to eat healthier) is probably laughing right now.  I mean, I read back and I sound so GIDDY.  AMAZED that we can still eat GOOD while eating gluten free.  Well, the fact of the matter is I AM amazed.  I really thought we would be giving up some things that we love when we shifted to this new way of eating.  We have not given up anything!  We can still have our cake... and love it too!

Thursday, November 10, 2011

Three Years

3 years
36 months
1095 days
26,280 hours
1,576,000 minutes
94,608,000 seconds that we have lived with diabetes...not turned our back on it...not let it out of our thoughts for even one of those seconds.

8,760 finger pokes
325 site changes
125 sensor insertions
1,248 4oz juice boxes consumed to treat a low
36 vials of insulin
1 opened, but unused (thank GOD) glucagon kit
30% more grey hair for me and Sugar Daddy
$17,000.00 in medical bills, devices and prescriptions (and worth EVERY penny!)
Countless tears...and even more hugs and kisses.

We have kept our son happy and healthy in spite of it.
Kept our son ALIVE in spite of it.
Three years also means 1095 mornings that we have woken up with our first thoughts leading us to listen intently to the sounds coming over the monitor.  To listen for his sweet sleep filled breaths or his rustling as he himself comes awake.  1095 sighs of relief that we made it through another night. 

Last night, right before bed, I checked his sugar as I always do.  This is what I saw:

It took my breath away.  No, that does not describe it well enough.  It knocked the breath out of me.  Like a hard punch to the gut.  I scooped him in my arms and carried him to the pantry where we keep the juice because I was unwilling to let him out of my site for even one second after that number made its appearance.  Three years later I still have that reaction.  It took almost an hour for my hands to stop shaking.  It took almost two hours for my stomach to stop aching from that punch to the gut that I took.  It just goes to show... all those stats up there don't mean squat.  They are just numbers.  Its the moments like that, when you have a 26 staring back at you and your blood runs cold to think that your son is just 26 points away from potentially losing his life that define this disease. 

And that is why today we will celebrate.  We will mark this three year diaversary with a party... and a dinner full of his favorite foods... and a dessert with a big ole slice of chocolate (gluten-free) cake.  Because he is ALIVE.  And he is HEALTHY.  And he is and forever will be, our Sugar Boy.

Saturday, November 5, 2011

Blue November

November is Diabetes Awareness Month and seeing all of the type 1 diabetes awareness posts and facebook updates this past week has been amazing. 

I have been doing my own facebook "daily facts" and have found myself thinking that what I am putting on facebook each day really does not even touch the surface of what we deal with.  It makes me want to do more.  But really... how much more?  And more importantly... HOW?  What is the best, most effective way to reach people and get our message across? 

I think of November as Blue November.  Much like October has nationally become Pink October.  But in November you don't walk into a grocery store and see a huge display that is full of blue products promoting diabetes awareness and fund raising for JDRF and the ADA.  You don't go to your favorite sandwich place only to find that all the chips are in blue bags and the drink cups have blue circles all over them.  You don't drive down the street and see bill boards with kids, teens and adults living with this disease.   You don't turn on the TV and see commercials with stars pimping out blue clothes or football teams changing the color of their socks to blue.  I could go on and on.  Really, in my opinion all the pink in October has really gotten out of hand.  It leaves a bad taste in my mouth.

It even borders on making me angry.

But what I have to ask myself... forcing myself to be honest... is WHY does it make me angry?  Is it because I feel like by seeing pink every time I turn around that the breast cancer message is being forced on me?  That it has reached proportions of absurdity?  That it has become the latest fad and that seeing football players and TV stars promoting it is absurd, especially since most of them probably don't even KNOW someone who has been affected by breast cancer?  Or is it because I knew... I KNEW... that come November we would NOT be seeing blue every time we turned around.  And because I want our message out there like that too?  I want people to stop and think. about the 40 that will be diagnosed that day.  I want people to know about the 1 in 20 that will die from low blood sugar or other complications of this horrible disease.  I want people to not give me a blank stare and ask "Oh, is type 1 the BAD kind of diabetes?"  or "Oh, but all he has to do is eat healthy and exercise and he will get rid of it, right?"

Sugar Daddy is REALLY against the whole Pink October movement.  More so than I.  And the question that I posed to him last month was, "What if it was me?  What if I had breast cancer?"  Would we feel the same way?  I just don't know.  Because when I see the BLUE displays at the grocery store in my head instead of the pink ones, I think, "Wow... wouldn't that be cool?"  And that is just the awareness side of it... not to mention the money that would be raised for research to bring  us quicker the amazing technology that will give us the artificial pancreas... and the research that will eventually bring us to the day when we can say, "We now have a CURE!"

What I do know is that even if we never reach the level of Pink October (and I am not totally sure we should!), what can we do to make Blue November more recognized?  What can we do to get out there MORE and let people know our message? 

I know this post is a little scattered.  And that's OK... because that is how my thoughts on this are.  Scattered.  Conflicting.  Confused.  Envious.  Determined.

Forever and always DETERMINED. 

Friday, November 4, 2011

A New Way Of Life

The one thing we can count on with Type 1 Diabetes is that things are ever changing.  Insulin to carb ratios... basal rates... all changing.  Always.

So, its somewhat surprising to me that the biggest change in our lives this past month is not related to diabetes.  It affects Sugar Boys diabetes (what doesn't??) but is not totally related to it.

For severl months I have suspected that Sweet Girl may have issues with processing gluten.  We have several friends, both inside and outside of the DOC that have gluten and wheat issues... some of them have Celiac, some just have allergies and sensitivity to gluten or wheat.  Because of what I have learned from these friends, I was identifying with some behaviors in Sweet Girl that had me worried.  If she had a lot of gluten rich foods throughout the day, by the end of the day she was bloated, gassy, crampy and often ended up in the bathroom with loose stools.  I wont go into all the details, but lets just say these poop sessions were not exactly normal.  So, I was convinced that she certainly had a gluten sensitivity if not Celiac.  We had a pediatrician appointment for both kids and their 5 year check up at the beginning of October.  Her pediatrician agreed with me... and that if not gluten, then some other food allergy was most likely the culprit.  She wrote up orders for blood work and promised that we would get to the bottom of it.... no pum intended.

The next week we had Sugar Boys endo appointment.  Knowing that he was also going to need his yearly blood work done, I held off taking Sweet Girl for hers, figuring we would just do them both at the same time.  We got into the little room, got settled and they did the finger stick and blood sample for his A1C.  I was nervous about it considering the completely uncontrollable numbers we had been having recently... both the lows and then the rebounding highs from those lows.  Doc came in and delivered the results... A1C was high.  Really  high.  Higher than its ever been.  It knocked the breath out of me and I felt frustrated and completely discouraged.  What else could I do.  I had been micromanaging the numbers but things were just NOT working the way there were supposed to.  I was blaming it on the honeymoon period.  That was why the numbers were just SO unpredictable, right??? Or was it just diabetes being hard to manage?  The doc hooked the pump up to his computer and downloaded all the info out of the pump and CGM.  He had all the info from the past 3 months, and he started going through it... page by page.... graph by graph.  Finally he asked if Sugar Boy ever complains of tummy aches.  I said yes, but that its usually when he is trying to talk me out of a snack, so I had dismissed them mostly as a ploy.  What he said next really caught me off guard.  He said... "I have to wonder if we may be dealing with Celiac here."

WHAT?  No!  Sweet Girl is the one we are concerned about for that... not Sugar Boy.  And please, God... not BOTH of them. 

But alas, the doctor explained that when someone has Celiac or even a gluten sensitivity that the food is not absorbed correctly.  That can cause lows and then rebounding highs when the food suddenly absorbs all at once.  That is exactly what we had been experiencing.  Finally, some answers to the incredibly wonky numbers.  Just not the answers I wanted.

So, we took them both for blood work.  That was pure hell, let me tell you.  it took Sugar Daddy holding Sweet Girl in his lap, a tech and myself holding her still and another to draw the blood.  In the meantime she was screaming bloody murder.  Sugar Boy did better, but we left there feeling like we had been through war. 

Sugar Daddy and I started researching.  As we were doing so, Sugar Daddy started noticing that some the signs and symptoms were very familiar.  He started wondering about himself.  He has always had what we just called a "sensitive stomach"... now we were wondering if it was more than that.  While waiting on the results we decided the whole family would go gluten free and see what happened.  I knew that from what I had heard it could take a couple of weeks and even months to see results from moving to a gluten free diet.  That was not the case with our family.  The change was instantaneous.  Within 3 days Sugar Boys numbers were the best they had been in months (if not close to a year) and Sweet Girl AND Sugar Daddy had no more "potty problems".  Gone.  Completely.  Since then Sugar Daddy has experimented with it a couple of times... eating gluten in the form of a hamburger bun or a dinner roll and the results have been indisputable... within an hour he has cramps and is running to the bathroom.  Sweet Girl had a snack cake the other night... one that was left in the pantry and had not yet been cleared out.  Within an hour she had tummy cramps and was curled in my lap.  She hadn't done that since before we went gluten free.  And Sugar Boys numbers.... well, the biggest thing we have noticed is that we have had to drastically back off the amount of insulin he is receiving since going gluten free.  But the numbers are good.  And we have only had high numbers twice since going gluten free.  The changes have been AMAZING.

So, what about the blood work, you ask?  Both kids' Celiac scans came back negative.  For now, they have both been diagnosed as just having a gluten sensitivity.  Sugar Daddy really should go get blood work done... but he is feeling so good for the first time in years that he is not willing to go back on gluten (and make himself sick) so that the blood work can be ran.  So, for now, we feel we know what we are dealing with and we are dealing with it by staying gluten free.

Its been a huge change.  It will continue to be a huge change... and major adjustment in how we think about food and how I go about feeding the family.  But its worth it.  SO worth it!