The ignorance is out there

A few days ago, I was perusing my husband's Facebook (it's cool... he knows about it), when I came across the following post that one of his friends commented on:

While I agree that the JDRF and KFC make strange bedfellows, especially when you need to buy a mega jug of Pepsi for them to donate the $1, I do appreciate any donations towards finding a cure.  But then I made the mistake of reading other people's comments:

Hey guys, no need to do research, I think I found the problem

Buy a pack of smokes and we will donate money to a lung cancer research group .... haha ... is this pic real?

Nice they cause it then they want YOU to contribute to find a cure!!!

Head? Exploding. And those are just a few of the snide remarks that people left.

My wonderful husband did leave a comment saying that consuming too much sugar will NOT give you type 1 diabetes (formerly known as juvenile diabetes) but it went completely ignored.

Another person we know made the following comment:

JDRF found that Mega Jugs of Pepsi-like drinks are a leading cause of Type 1, Type 2, and Juvenile Diabetes

Fred had to almost physically restrain me from driving to his house to kick him in the nuts.  I'm sorta feisty like that.

Which leads me to my point.  Recently there has been a movement, started by two moms, to change the name of type 1 diabetes.  I think their enthusiasm is admirable, and I love their passion, but I also believe that it misses the point.  And here's why.  Go back and read the comment above.  I'll wait...

Did you catch that?  He thinks that type 1 and Juvenile Diabetes are different. To add yet another name into the mix will only cause more confusion, never mind that most people don't even know that there are different types. Nor do they really care.

No, changing the name will not fix anything.  People are ignorant, though it's not entirely their fault.  They have been spoon fed crap by the media; news reports, talk shows, and magazines all talk about the "facts" (I use that word very loosely) of diabetes, but never discuss the different types.  I wish we could somehow use media to educate the masses about all the types that fall under the diabetes umbrella, but I don't see it happening.  Media doesn't care unless it happens to a Kardashian.

So then, what do we do?  I think it starts with us; as a grassroots moment.  Start from the bottom up and educate your friends who will hopefully in turn educate others. I try not to vomit "diabetes stuff" onto my friends, but I try to find "teachable moments" here and there. 

I had one friend, who knows how much work goes into caring for Elise tell me that she heard a family member talking about diabetes and how all you need is a shot every once in awhile and stay away from bad foods. She gently corrected the family member, and although it probably went in one ear and out the other, it's a start... right?  At least someone is listening.

There will always be ignorant people out the who don't get it.  My advice?

It gets better

Dear parent of a newly diagnosed baby,

Let me start off by welcoming you to one of the crappiest subsets of an already pretty crappy club. I'm guessing you stumbled here by googling something like "my baby has type 1 diabetes" or "babies with type 1 blogs". Those are some of the more popular search terms.

Can I just tell you that I know? I get it. I understand the emotional hell you are living in right now. The questions you have swirling around in your head; why my child? Did I cause this? How can I do this? Will my baby be okay?

I understand the pain of having to hold down your baby, who doesn't get it, to give them a shot. I know too well the worry of them not being able to tell you if they're low. The fear of putting them down for their nap and having no idea what their BG is.  And yes, I get how hard it is to check a BG of a child who is asleep in their crib.

It sucks. It's okay... yell it from the rooftops if you want to. Go on.  I know you want to.  Because I wanted to.  I wanted to scream the F-word as loud and as long as I could almost every day.

But, can I tell you something?  It gets better.  It does.

I know right now it consumes your thoughts.  Your brain is bogged down with carb ratios, correction factors, carbs, blood sugars, ketones.  Diabetes constantly is swirling in your thoughts.  Everything you do, you have to factor diabetes in.  Your diaper bag, once used for normal baby things now is weighing you down with all the tools of the diabetes trade in it.

But there will come a time that you will actually forget that your child has diabetes.  For a few moments anyway.

You will be able to watch other children freebase apple juice without a jealous rage welling up inside of you.

You will stop living and dying by every number.  You will learn to interpret the story those numbers are trying to tell you.

Leaving the house won't seem so overwhelming.  I remember being so scared that I was forgetting something vital, but pretty soon you can tell you have everything you need with a single glance. 

You will become you again.  Not the you that you were before your baby was diagnosed.  But a better you.  A stronger you.  A more compassionate you. 

And the flow of tears will ebb. You will notice the times between emotional breakdowns will grow longer, and the breakdowns themselves; shorter. There will always be sadness residing in your heart, but with the passage of time, it will take up less and less space. 

Don't get me wrong, diabetes is STILL hard, and almost 5 years later there are days when emotionally I am transported right back to the beginning. The difference is, I am better equipped to handle it.  I have learned to not live in the darkness, but embrace the light of all that is good in my daughter's life.

To answer your questions; I may not know why any of our babies were chosen to first crawl and later walk this path, but I know this: You did not cause this anymore than I caused my daughter to have type 1 by only nursing her and making her homemade baby food with organic ingredients.

You can do this. Check out the many people on my blog roll who are also doing this.

And yes... your baby will be okay. Mine is. Just look at her.

I may not know who she would have been if diabetes had never entered our lives. But I do know that she has grown to be the sweetest, wisest, most loving and caring little girl.  She is truly a mother's dream.

She is absolutely incredible.

So are you.  You can do this.

Why diabetes sucks today... vol. 1

See all those pods? They are all the pods we've gone through since last Wednesday. I took that picture last night, and in that time period, we should have only gone through two pods.

TWO.

If I can still count correctly, there are eight pods in that picture. We went through four of them in one night.

Two fell off with minimal effort.

One wouldn't fill with insulin.

And one just never worked at all.  Elise's BG went from 245 to 475 during the three hours she wore it, all the while receiving almost an extra unit of insulin AND running an 80% temp basal.

On that night, Elise went through three pod changes and two shots.  In a span of six hours.  She's my rockstar.

(the reason some of the pods are written on is so I can remember what the issue was with that particular pod)

All the pods have been called in.  Omnipod is wonderful to deal with in that respect.

I get it. Products fail, crap happens.

It just makes your head explode when it happens to your child.

And THAT... is why diabetes sucks today.  

Ain't no cure for these summertime blues

It came in the mail the other day.  Eight or so shiny pages chock full of fun.  It was the information guide to all the summer camps offered by our city.

I actually thought it was something else; another brochure our city puts out about upcoming events, adult sports leagues, library offerings and the like.

When I realized what it was, those old familiar feelings started bubbling to the surface.  Sadness. Feeling like an outsider.  Loneliness. 

Anger.

Such ferocious anger at this disease that works so hard to leave my daughter out of all the things most people take for granted.  Like summer camp.

Elise will be going to summer camp.  The one offered by her pre-school.  Her regular teacher will be there and is only too happy to have Elise in her class again.  I love that woman.

The problem?  Next year she's too old for the pre-school's camp.

But she's too young for me to let her go the the city-offered ones.

And they're camps I know she would love; gymnastics, soccer, and even a lego camp.  My girl can build the crap out of lego sets.

And I know most of these camps are run by teenagers.  Don't get me wrong.  I love teenagers.  I used to BE a teenager (and probably still act like one some days).  But most lack the maturity to deal with t1.  I can still remember when I put Elise in skating lessons when she was 3.  At her first class, I tried to give her 15-ish year old instructor the D run-down and she gave me this look like I had two heads.  She shrugged her shoulders, gave me a flippant, "o-kay" and skated off.

So I spent the 45 minutes every class, staring intently through the window into the rink, trying to determine if Elise was going low.  This was obviously before the new G4 dex, so any time I felt unsure, I had to haul 2-month old Mattias in his car seat with me into the freezing rink, get Elise's attention, and wait for her to painstakingly make her way to the door so I could check her dex. The teacher would never even acknowledge me.

And now between nursing and naps for my two littlest littles, there is no way for me to "camp out" at Elise's camp, in case there's a problem.  The same issue rules out any D day camps; as they're all really far away from us.

So I sit here; feeling angry in a way I haven't been in a very long time.  Age, plus a pump and the dex, have all made life a little bit easier and inclusive.

I guess this is just one more thing that will have to wait.

Things Diabetes has taught me this month... March edition

-Even though life with D is getting easier now that Elise is older, it still has it's huge pain-in-the-ass moments.  We're having our master bathroom redone, and as you can imagine, it gets very loud at times.  The first day, Lucas was having difficulties falling and staying asleep, and was getting a little frantic because he hadn't slept all morning.  My solution was to put the kids in the car and go for a drive, except that Elise's BG would NOT stay over 90.  She woke up that morning at 101, started showing slightly down on the CGM as soon as she started eating, and had her breakfast "spike" at 85.  I was too afraid to put her in the minivan, where she sits in the "way back".  I mean, really diabetes?  I can't even go for a drive?

-While I love the DOC, nothing is better than hanging with D-peeps in the flesh.  We have a great support group in the area, and while I don't get to go to a lot of events, I always come back feeling "filled up" when I do.  If you live in the DFW area and are not a part of this incredible group of people, send me an email through the "contact me" link on this blog and I can forward you the information.

-Sometimes Elise likes to test my BG when she's feeling a bit bad about diabetes.  It's amazing how a simple finger poke can chase her blues away.  A few days ago, I had been sneaking skittles and starburst from the kids' Easter stash on the sly, when she wanted to check my BG.  The result?  I came in at 119 and she beat me at 117.  The lesson? Don't sneak sugary candy if there's a chance of a surprise BG test.

-I think I have found the hardest restaurant type to bolus for.  Forget pizza.  Forget pasta.  Churrascarias take top billing.  If you are unfamiliar with them, it's a Brazilian restaurant where they come around to your table with all different types of meats of skewers.  You have a card beside your plate that says "Sim" (yes) on one side, and "não" (no) on the other.  As long as it says sim, they keep on bringing you meat.  They also have a salad bar with all sorts of goodies.  We went there for Easter dinner and what makes it difficult is there is no telling on how much your kid will eat and when they will stop.  What I had to do was just start with a small bolus, and then keep bolusing her as she ate more.  I think I bolused her 5 times... thank goodness for pumps!  Plus it's really hard to keep up a conversation AND mentally add up carbs that are unbolsed for.  Needless to say, I was exhausted after that meal; due to a meat coma and math fatigue!