Hijack Wednesday

Since Joanne is already asleep and it's only 12:30 AM on Wednesday (where we live), I thought I would hijack her blog to let you know that her "What NOT to say to the parent of a Type 1 Diabetic" video now has over 100,000 views!

The picture below is of an article that Dr. Stephen Ponder wrote about the video in February of 2011 (that I got framed for her).

Congrats to my funny wife!!!

Google carbs

Have you seen it?  It's called Google carbs and it's pretty cool.  All you have to do is enter what you need to know the carbs for, plus the word "carbs".  In the example above, I searched "strawberry carbs", and up pops the carb amount, plus a drop down box so you can choose your measurement.  In the screenshot above, I chose 100g (what you use to figure out the carb factor).  As you can see, it gives you an answer of 8.  Just move the decimal over two to the left, and you get the carb factor; .08.

Or you can pick 1 cup.

Or by the berry

Or even strawberry puree.

Oh my Google Carbs... I think I love you.

We get by with a Little help from our "Friends"

Oh my, Diabetes Mine, you certainly seem to be poking some hornet nests of late.  First Wil's post on parents checking their kids at night (on which I left a comment, and really wanted to blog about; but... well, life. 'Nuff said).

The latest poke is Mike's post on the GAC, or Guest Assistance Card. The gist of his post was that PWD should not use such accommodations, unless absolutely necessary. He would rather the world see the type 1s can do anything anyone else can; including waiting 45 minutes in 100+ degree weather to ride a roller coaster. In direct sunlight.

I will be the first to loudly say that we used the GAC.  Was it absolutely necessary?  Who knows?  That is such a grey area and differs from person to person.  But for Elise, it was a must.

Issue #1: Elise runs high at theme parks.  That's just how she rolls.  Disney, Six Flags, state fairs, water parks... anything with a ride.  She wants to ride the biggest and the scariest rides she can, and that in turn makes her BG sky-rocket into the 400-500 range.  We usually run a 95% temp basal the entire time we are there, plus do a tonne of corrections, and can still only get her into the low 200s.  As a result, she feels crappy, and we have to take a lot of breaks.

Issue#2: Elise wears the pod.  We've been told that her body temperature *should* keep the insulin from going bad.  But when it is that hot, forget it... nothing will keep it from spoiling.  This means even more time outs for pod changes, shots etc. 

Issue #3: We worry about dehydration and its good friend, ketones.  In hot temperatures, everyone has to drink water, but because of Elise's elevated BGs, we PUSH water.  We want to make sure she is well hydrated and can keep the ketones at bay.  Add on some more time outs for many, many bathroom breaks.

All this adds up to a lot of sitting around, NOT doing what Elise wants to do; ride the BIG rides.  All of them.  Multiple times.  Over and over. And for the amount of money Disney charges for us to get in, she'd better be able to do just that.

But if she's sitting in some air-conditioned room, fighting a BG of 450 and feeling so awful that she's crying, she can't.

And why can't she?  Because of diabetes.  We would never be in that situation if it wasn't for diabetes.  We can prepare until the cows come home and it STILL doesn't work. We didn't do anything wrong; unless taking a child with type 1 to a theme park knowing what it does to her blood sugar is wrong.  And if it is, I guess she CAN'T do everything a kid without type 1 can do.

As for the TSA Cares program, I will also continue to use it for as long as it's around.  All we want is for airport security everywhere to follow the same protocol for PWD and CWD.  TSA Cares helps in this regard. I'm not asking for special treatment, I just don't want to ever miss my flight again because the TSA won't follow their own rules.  

Look, I get that we want the world to see that PWD and CWD can do pretty much anything a person without diabetes can, but sometimes they need a little help.  There should be no shame in that. While I will never let Elise falsely use diabetes as an excuse, I want her to know that it's okay to ask for help. I don't see it as special treatment, I see it as a break.

And if it helps a child who, just last month was crying because she didn't want to live the rest of her life with diabetes, feel special; then I'm okay with that too.

***I just wanted to add that I have no problem with what Mike wrote... I felt the need to show a different viewpoint.  And since all three kids took a nap today, I had time to do so.***

Here there be diabetes

The other day, the reasoning center of my brain took a vacation.  It could have been that I wasn't quite recovered from FFL.

Or that upon our return from FFL, Fred had to go out of town. And due to that, I had to take all three littles to the grocery store to buy food, and the whole experience kinda numbed me.

Whatever the reason, I decided to take the kids for sno-cones on the way home.  Elise was trending kind of low, it was hot, and I like sno-cones.  PURE SUGAR FOR EVERYBODY!

Did I mention it was only an hour or so before bedtime?

I thought that surely, the carb info would be on the bottles.  I could eyeball what they poured and make a pretty good educated guess. Except when I stepped up to order, neither Beavis, nor Butthead could figure out what I was talking about (I nicknamed them this for their uncanny inability to form a complete sentence, or talk without snickering).

I ended up calling a friend, who posted on our support group FB page (since I'm not on FB, I can't access). Within 5 minutes, she called me back with a bunch of responses.

I SWAG'd like a boss, and as happy as Elise was with her full-sugared, grape-flavoured "icy-pop" (as the kids dubbed them), I was even happier to see this a few hours later:

Gave her a small, uncovered snack to get her a little higher before she fell asleep

But the part that made my night was finding this right next to the sno-cone stand:

Finding a little "same-same" in the land of sugar and ice.  

***I forgot to add the best part of the story... when I was explaining to B & B that I needed the carb information; Elise, who was standing next to me, put her hands on her hips and said, "yeah, I have type 1 diabetes and my mom needs to know the carbs so she can bolus me!" So cute!

Wordless Wednesday; FFL

Disney Before FFL:

My boys! 

I love this pic. Two tired kiddos

My little angry bird

Duuuuuumbo!

Obligatory castle shot

The Conference:

Doing some learning with Gary S.

Hanging with some D-Mamas

Me and my princess

Two very cute princesses

Shannon (love her) and two of my littles

Saying goodbye; Sara and Shannon

Shhhh is right. Never wake a sleeping baby

Sleepy Lucas

Best buds... Elise and L with the mice

Pluto looks a tad crazy

A day at FFL... a great way to tire out your kids

A princess meets a princess

Things aren't always as they appear

When I was about 7 months pregnant with Elise, I went to Costco to buy some water.  As the boxes were quite heavy, I needed help to get them into my cart.  I figured that when I got out to the parking lot, I could ask some capable-looking person to help me get them into my car.

Outside, I approached a middle-aged, normal-looking man and said, "excuse me!"

He ignored me and kept walking.  Not one to be timid, I tried again, louder.  "Excuse me!"

Reluctantly, he turned to look at me. Hesitatingly and rather impatiently, he replied, "yes?"

I told him that I needed some help getting the boxes of water into the trunk of my car, hoping he would take pity on me and my poor pregnant belly.

Relief washed over his face as he told me, "Oh!  No problem... I can do that!"  He paused, and then said, "I thought you were going to ask me for money."

I knew I wasn't dressed for tea with the Queen, but homeless?  Really?  When I got home, I looked in the mirror.  Doo-rag on my head, sweats, and no make-up (I don't wear it).  For him, that equaled someone who would be out pan-handling and not the 7-month suburban hausfrau that I was.

Diabetes is often like that.  My child is the picture of health.  When people learn for the first time that she has diabetes, they often 
exclaim, "but she looks so healthy!"

And she does.  And she is.

Except she has a disease that daily is battling inside her body.  I am thankful that diabetes rarely manifests itself physically, but I get frustrated with the people that equate that take that to mean it's no big deal.  Yes, my child looks healthy, but hardly anyone understands just how much hard work it takes to make it so.

More FFL13

• A few days before the conference started, we kept bumping into "Rebekah the Scottish girl" everywhere we went.  It continued throughout the week and happened one last time right before we left, so we were able to exchange information.  It makes me think that somewhere, someone really wants us to be friends.  And it makes me happy.

• Meeting Katy, Tina, Misty and Lora for the first time was not like meeting them for the first time at all.  It was like we had been friends our whole life.  And it was so fun to put real, 3-dimensional faces with the names.

• Note to self: next time bring an extra bag to cart home all the D-SWAG obtained at the Exhibition Hall (Stuff  We All Get as opposed to Scientific Wild-Ass Guess).

• I love that we have our own meaning for SWAG.

• I got to meet Jackson, the dog with diabetes... such a sweet puppy.  Mattias LOVED him.

• Thank you to all the teens out there who were so friendly to Elise.  She loved all the attention, hugs and same-same you guys brought to her life.  You make me not so scared to face the upcoming teen years.

• I loved hearing about people needing help with D-supplies, reaching out via social media and then receiving what they needed.  How awesome is our community?  So awesome that when I discovered that I had miscalculated the number of diapers I was going to need for Mattias due to some tummy issues on the first day (5 diapers in two hours... seriously kid?), someone offered to drive me to the store.  And another Mom gave us some pull-ups to tide us over.  They may have been pink and had princesses on them, but he wore them.

• I signed up for TrialNet; including celiac and some study about turning on auto-immune genes (or something like that... is it sad that I can't even remember why they took 10 vials of blood?). I'm interested/nervous about the results.

• Did anyone else notice the inordinate amount of redheads at this conference?  Of course as a redhead myself, I tend to notice them... think of it like how a dog acts when they spot another dog.  Although I fight the urge to run up and sniff their bums. back to my point... is there a correlation between redheads and T1?  Are any scientists studying this?  After this week, perhaps they should be...

• This (okay, not a thought... but she takes my breath away):

***Thanks to Michelle R. for the beautiful picture

Wordless Wednesday; bracelets

I can't bear to take them off... They're a reminder of a time I don't want to let go of yet. I keep looking for bracelets like mine on people everywhere I go and I can't find them.

It makes me sad.

Friends For Life... my thoughts

I have been writing this post in my head for the better half of a week now, and cannot seem to find the words to do it justice.  So I will say this:

Go.

The End.

Just kidding, but I think this post is destined for bullet points, otherwise it would be a novel rivaling that of War and Peace, length-wise, and ain't nobody got time for that.

(on a completely different note, oh my damn that video is funny)

Friends For Life thoughts, straight from my brain to your computer screen:

• It. Was. Awesome. I felt home for the first time in many, many years.

• It was also overwhelming.  I didn't want to miss anything.

• And it was HARD.  Taking a 5 year old, two year old and a seven month old to FFL is do-able.  But be prepared to lose your shit several times. 

• Jessica Apple is so tiny and adorable.  She's like a real-life doll.  I really enjoyed her session on Social Media with Scott and Kerri.

• Gary Scheiner needs to come live at my house.  The man made my head explode with so much information.  If you see pieces of my brain scattered all over Orlando, please send them back to me.

• Kelly K. talks like she writes.  It's funny.

• Scott Johnson gives THE best hugs.  

• Shannon is awesome.  She and her husband were so much help to Fred and I at the conference, they deserve their own post.  And their daughter?  Awesomeness squared.

• I loved the Stress Management course given by Dr. Bob so much, I wish I could have taken it every time it was offered.  We meditated.  

• FFL is just like the commune I've been imagining all these years.

• The conference not long enough.  I would have had to clone myself many times over to get to all the sessions I wanted.  Even when Fred and I split up, we still missed stuff.

• They need to offer a session on sleep deprivation. Or nap time for the parents.

• I loved meeting Karen (and husband Pete), Sara, Scott, Kerri, Manny and all the other adult T1s.  It gave me such hope for my daughter.  And Elise loved it too.  She said it makes her feel better about growing up with diabetes.  She also said next time she doesn't want to be so shy around them.

• Fred went to the Pump Tips and Tricks, and it was packed.  He was disappointed that they spent most of the time talking about tubed pumps.  We understand why, but podders are people too!  Maybe they need to offer a separate session just for pod people.

• Meri spoke during the keynote about Dr. Richard Rubin.  She moved many to tears. I am so amazed at her strength and honoured to call her my friend.

• Can someone please come to my house and do the carb counts for all the food like they did at the conference?  That would be great.

• Elise ran high, high, high the whole time.  Normally that would make me start obsessing about fixing it, but there it seemed okay.  We just rolled with it.  Kept calm and temp basaled on.

• One of my favourite things was when people who read this blog would come up and say hi. I guess the red hair makes me easy to recognize.  But everyone was so great to talk to and as an added bonus, they even said nice things about me and nobody punched me in the face.  Win!

• Florida is armpit (hot, wet and kinda smelly) hot.  

• Seeing Elise's face when she met Belle made the whole trip for me.  It erased all the lost sleep, missed naps, temper tantrums and just plain difficulties.  She tells me Belle is her "twin".

• I enjoyed getting my dance on at the banquet/dance.  If anybody has embarrassing photos of me, please hand them over.  I'll trade you for all the embarrassing ones I have of you.

• I am so thankful for Disney's Guest Assistance Card.  It made our visits to the Magic Kingdom possible.  Amusement parks make Elise run sky-high.  Even with a +95% tb, she was in the mid 200s.  And it was so unbearably hot. Getting to bypass the lines and wait in the air-conditioned areas let Elise ride the popular rides that she wanted. I know not everyone had such a good experience with obtaining the GAC, and I hope Disney hears from those people... One mom told me that she was told diabetes is not a "real" disease like cancer.  Kudos to her for not ripping that person's pancreas out.

I probably have more thought rolling around in my brain, but they'll have to wait.  This post is long enough.  Plus, the baby is asleep and I have laundry to do.

Back to life, back to reality.

TSA Cares part 2

This post is a continuation of this one...

I figured the real test of the TSA Cares program would be our trip home. That way I would get to compare the two airports. I was not disappointed.

While I was not met at the curbside by a manager like I was at DFW, I did receive a call right as our bus pulled up the the terminal at MCO (Orlando). I was told to call back when I got closer to the security checkpoint, and when I did, I was met about 2 minutes later.

We again bypassed the line. I pulled out the items that I did not want to go through the x-ray, and Elise walked through a separate door. I was asked a lot of questions as to why I didn't want the items to go through (his reasoning was that pacemakers go through just fine), but I gave him my answers and he seemed satisfied. He wasn't challenging me, just curious.

This time around, Elise's hands were swabbed, but unlike DFW, our carry-on items were not. Something set off an alarm, so I got the pat-down. It was no big deal and we were done in less than 15 minutes.

So kudos to the TSA Cares program... Hopefully we'll be seeing less and less stories about bad experiences with airport security. Make sure anyone you know with type 1 and on a pump/CGM knows about it!

The TSA Cares # is 1-855-787-2227.

Hopefully I'll have some time to share my thoughts on FFL soon!  You know, before I completely forget everything that happened.

The TSA does care

Remember last year when we flew to SFO and had a terrible experience out of DFW (held us in security for an hour, made Elise cry,we missed our flight)? I'd link to the post, but I'm using the app to blog and I'm not sure it has that capability. 

When we decided to go to FFL, I went back to the TSA website to see if there was anything I could do to make the process less painful, and I found something called "TSA Cares". You call a number, tell them you are travelling with a child with type 1, let them know your flight number and time, and they basically give you a liaison that meets you to help you through the security screening.

In our case, we were called a few days prior to our flight, and L explained how it would work. Then, the day of, he called again and even notified us of a gate change.

As we pulled up to the gate, he met us at our car and escorted us to security. Bypassing the line, he then opened up a lane just for us and had a team working on getting us through. The rest of us walked through the machine and Elise was allowed to walk through a separate door.

Now, they did open up every one of our carry-on bags and wipe everything down, but they allowed me to pull out the items that I did not want going through the X-ray. All in all, we were through in about 20 minutes, and it was completely pain-free.

I know we usually blast the TSA about our negative experiences, but they really went above and beyond in our case. I don't know if it's like this at every airport, but give TSA Cares a try... The number is 1-855-787-2227.

Go east, fake pancreas

Sometimes I struggle with just how much to share on my blog.  After all, it is Elise's story and I'm just a very over-involved narrator.  There are many things, personal things, that I hide away.  I hope one day Elise won't mind that I've let strangers peer into our life.  

This particular incident happened a few weeks ago, and I've haven't posted about it because my heart is still recovering.  It's a wound that cut pretty deep, and it's not just mine, but Elise's too.

But I think it's important for others to hear.  Especially those casual observers who may not have a direct connection to diabetes, but read my blog for an insight into our life.

It happened as we were getting the kids ready for bed.  Something was on Elise's mind and she asked if she could talk to me in her room.  Once we sat down the tears started.  And the sobs.  Then she blurted out, 

"Sometimes diabetes makes me want to quit life."

Ouch.

But then, the kicker, "I don't want to live the rest of my life with diabetes."

She fell into my arms and cried out for 5 year of shots, finger pokes and pump changes. I cried too.  And tried my best to tell her what she needed to hear. I think I did a lousy job, at best.

She is only a few months shy of her 6th birthday, but for almost all of her life she has been carrying this burden that hurts her so much she wants to quit.  Do you hear that?  QUIT LIFE.

For those of you that have concluded that diabetes is no big deal, I would like you to look into the eyes of my hurting child and tell her that.  Tell her that highs that come out of nowhere and last for days on end are fine, even though they can damage her body.  Tell her that lows can't feel that bad.  Just take some sugar and suck it up.

I don't expect people that have not lived with diabetes to understand.  They can't. Even I can't fully understand what Elise feels.  But I think I know where I can find some people that do.

Which brings me to the title of this post... We are headed east.  Well... southeast, I suppose.  Soon we will find ourselves amidst castles and princesses, heroes and warriors.

And we will find people that get it.

And "same same".

But most of all, we will find hope for one little girl who needs it very badly right now.

FFL.  See you there, my peeps.

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

Really?  June? This means the year is half over?

How. Did. This. Happen? Anyway, onto the post...

-A really fun game we like to play is called, "Find the Alarming Pod" (alarming as in making a noise, not a pod that is disturbing... but you already knew that).  You play by throwing every pod your daughter has ever worn in the last almost 2 years into a box.  Then you wait eagerly for the day that one of the discarded pods starts to emit the "screech of death" for no apparent reason than to add yet another sound into your already noisy life. Gather your children and dump the pods onto the floor, telling them that whoever finds the alarming pod gets a whole dollar! As an added bonus, even if the pod is making noise, your kids aren't. 

-Sometimes the diabetes blues sneaks up on you when you least expect it. About once a month, I speak at our local Children's hospital's newly diagnosed class about the support group Fred and I belong to.  This started a few months ago, and with one talk under my belt, I felt pretty calm about the next one.  Except when I got up there in front of these poor families who looked absolutely shell-shocked, and I got to the part when I talked about how alone I felt those first few months, I lost it.  Dude... it was brutal.

Then a mom in the front row started crying, and I reigned myself in.  How embarrassing.  Here I was, trying to show these Moms and Dads that they won't always feel so lost and sad, and I, a wily 5 year veteran couldn't even keep it together. True diabetes had been kicking our booties lately, but I pride myself at being able to keep it from affecting me like that.

Anyway, at the end of my talk, several of the parents came up and thanked me for being so transparent.  I'm just hoping next time I can avoid the water works.

And this has nothing to do with the post, but Happy Canada Day to all my peeps north of the border. Want to see some uber-cute pics of my three Canadians? Click here to see my annual Happy Canada Day post on my other blog.