No Words...

I don't know if I'm ready to do this but here it goes...

Less than 24 hours after I posted What doesn't kill you our sweet Evelyn was diagnosed as a Type 1 diabetic. Ironic, isn't it! After I post I need a break blah, blah, blah and here I am with another T1D in the house! What a slap in the face!!

So here is what happened:

Just after our Nora was dx'd in 2005 we enrolled in the TrialNet study. (This study tests for auto anitbodies to determine your likelihood of developing T1D. Is NOT definitive but we just wanted a head's up). So my hubby, myself and Evelyn all had our blood drawn. My hubby and I came back negative but Evelyn came back with 3 out of 4 auto antibodies. I didn't let the news devastate me as I used this info as knowledge. At the time she was 12 and not spending as much with us and I figured the diabetes signs would easily go unnoticed. We made it all the way to phase 3 of the study which was giving her oral insulin. About this time we found out we were preggers with Jackson (shocker) and really didn't want to give Evelyn oral insulin. I didn't have enough time to really dive into all the ramifications of putting her on this so we backed out of the study for a while. We still had her check her blood sugars when she complained of not feeling well. Years went by and nothing really happened.

Fast forward to October of 2011. We were at a JDRF Halloween Boo-Fest with lots of activities, vendors and research updates going on. Evelyn says to me, "Mom, I think I need to test for diabetes again". Fine, it doesn't cost anything...let's do it. She was 17 and college was on the horizon, not sure where she would end up so yeah, let's do it again. Results come back she's positive for 2 out of 3. (Don't ask me the difference in the 3 vs. 4 auto antibodies in the test. I questioned back then and it's all medical terminology and whatever!) So she did the oral glucose test. The Endo termed Evelyn as Glucose Impaired aka. PRE diabetes. (Yes, it exists..and yes, in relation to Type1). The Endo decided to set her up on her own meter with test strips, as we were sharing Nora's supply and running out before months end. We could have started her on an insulin regimen of Lantus, a small dose. But I was afraid of  lows and since she drives and hadn't really experienced lows, mostly highs, we declined. I knew the signs and promised to check in with any weird numbers. 

Which brings us to 5/31/12 at 11pm. "Mom, I'm not feeling good at all." Brings me her meter which reads 579!!! I look at her, instruct her to wash her hands again and retest. She does and brings back 565!! S#@*!! I have her test for ketones...negative! Wait 30 minutes...praying it was a fluke number and have her retest. 525!! Call the Endo on call. Now, I don't know about your hospital but our ER is not very well equipped for diabetes. If you have broken bones, etc. great, go to the ER. But I was dreading taking her to the ER for a diabetes diagnosis. I begged to have her go to clinic first thing in the morning but it was a no go. We head on down to the ER. Sugar in her urine. No ketones. IV saline drip. 

What's weird is no one ever said YOU HAVE TYPE 1 DIABETES. It was a lot of apologizing, you've seen what your sister goes through, etc. The medical staff had access to her records, knew she was glucose impaired and knew we dealt with Type 1 already but no one uttered those words. Talk about surreal...Evy's in tears, I'm comforting her and thinking of what I need to do to ease her into this transition. Even as I sit here writing this I feel like I'm telling you a story about someone else. It hasn't sunk in yet. I've not cried about it. I've not gotten mad at it. I'm  just NUMB!! oh, and I've bitten my nails to nubs...attractive...NOT! 

By 5am, 6/1/12, she was admitted and given her first dose of Lantus, 11 units, and first correction with Novolog. She had dropped to a blood sugar of 440. Then you all know the rest...team of Dr's, nurses, dietitians and social workers. What was nice was everyone talked to HER. She is days away from her 18th birthday and they talked to her about her diabetes. Of course hubby and I will help her but ultimately she is learning and taking on her own care.  

She was discharged yesterday and was glad to be home. Her birthday is this Wednesday and she had lunch plans with her girlfriends already in place. She wanted to cancel them. I told her absolutely NOT!! You must live your life like you do everyday, except you live it with diabetes. She hasn't cancelled plans and she has even worked her 5 hour shift at Hallmark, taken her blood sugar AND given herself injections. 

She's going to be fine.  

I have contemplated the "why us". Out of everyone in the world we have THREE kids with chronic illnesses. Are you kidding me?!?! Yes...I know...it builds character...God only gives you what you can handle...it'll make you stronger...we were chosen for a reason... Right now, I don't want to hear ANY of it. I feel like I could spew obscenities for hours if someone tells me this!! I just need to be...let it sink in...and KICK D IN THE ASS!!

I know...this is a long one...I'll wrap it up. But not before I thank each and everyone of you for being  wonderful members of the DOC. Y'all get it. Hell, many of you already have multiple children and family members with Type 1. You are my rock outside of home. You allow me to vent, celebrate and curse this horrid disease and give encouragement without saying the stupid things mentioned above. Most of all, thank you Tony, Diane and Thomas for being there in the wee hours with your love and support. You all mean the world to me! 

Nora dx'd 6-13-05, Evy dx'd 6-1-12

Blue Heel Society "Fan Of The Week' is Amanda Ortiz

Thanks to the generosity of the Developers of our BHS Fan Of The Week (FOTW) Application, we have a full working version of their Top Fan Application that allows us to showcase our Bluetiful peeps, based on computer magic (Randomness) & multiple interaction factors on our Facebook Page.

This weeks Fan of the Week (FOTW) is Amanda Ortiz, and we asked Ms. Ortiz to answer a few questions as to learn a little more about her.

BHS: Connection w/ diabetes
AO: My brother has diabetes type 2, we lost a close family friend to type 1, and Andrew..

BHS: General geographic location
AO: Boston, MA

BHS: What blue shoe (Heel, sneaker, riding shoe, etc.) suits you & Why?
AO: I love my blue Nike Runnng sneakers and blue coach flip flops!!

BHS: What does advocacy mean to you?
AO: Speak up about a topic that is near and dear to my heart...Let the whole world know more about a certain cause (TYPE1RIDER)

BHS: Words of wisdom/encouraging statement/general statement about diabetes
AO: Diabetes sucks, plain and simple and we have to do what we can to find a cure for this horrible disease......

Congrats again to Ms. Ortiz, and the BHS Team thanks each & every one of YOU for being a part of our Family.

What doesn't kill you...

You all know that I am a full time pancreas, diabetes advocate, Blue Heel wearing, Kick butt D Momma but there is another side to me too. I work at Hallmark a few times a week for my sanity (although, sometimes it's more work to get to actual work than its worth!!) But anyways...Hallmark carries a line of cards called "Between You and Me". These are agonizingly looooong cards that are VERY mushy and I just don't care for them. However, last Friday, I was putting away a shipment of cards and for some reason one of these cards beckoned me to read it. Here is what it said:

"They say what doesn't kill you makes you stronger. 

Well, what if you didn't sign up for extra-strength training?

What if you'd rather catch a few breaks once in a while?

Is that so much to ask?

At some point, you'd think you'd be entitled to a free pass or two:

Skip this challenge.

Avoid that crisis.

Delete those problems.

It's not that you're not strong 

or that you don't have what it takes to get through this.

You are, you do, and you will.

But you've built enough character already, and its time for things to lighten up a little!"

Don't you ever feel this way?

                                 ...even a little bit? 

                                                       I know I do. 

I feel this way after a birthday party I drop Nora off at only to have to turn around and go back to the party because her sensor decides it doesn't want to work but it's a sleep over and really need that sensor to work. So I have to do a whole sensor change.

Why can't I just drop her off like all the other parents do?!!?

I feel this way when she eats. Making sure we count every carb, SWAGing, bolusing before, during or after she eats, depending on what she eats. 

Why can't she just eat?!!? My 4 year old asks "how much insulin do I need" before he leaves the table and he is NOT a diabetic!! 

I feel this way when she down at the nurses office treating a low instead of in her classroom learning. 

Why can't she just learn!??!

And don't even get me going on my hemophiliac son which is a whole other host of concerns on why he can't do certain things.

A few breaks would be nice...

blood sugars in range.

sensors working properly and accurately.

sleeping through the night. 

perfect SWAGing.

I bought that card last Friday. Not to send to anyone. To keep. For ME. To take out when I'm feeling like I've had enough and read. It's funny...in a sick way. It made me laugh because this card just hits home.  

Just remember...it WON'T kill us, it WILL make us stronger, but dammit...I'm ready for a break! 

Wordless Wednesday-a crab of a different color...

Bring on Summer!! Yep...even with diabetes! 

Challenge: Dear Diabetes by Melissa Morley

A few weeks ago I posted my letter to diabetes, simply titled: Dear Diabetes. Thank you to Melissa Morley for sharing her Dear Diabetes letter with us! You can find Melissa at Naturally Sweet-Life with Type 1 Diabetes here. 


Jen encouraged the rest of us to write and share our own letters to Diabetes.  I want Jen to know that I tried; God knows I did.  My first attempt was an f-bomb laced diatribe.  My second attempt was a letter of a defiant and threatening nature.  The third time around I just wrote "you can't have Alison" and cried until I couldn't cry anymore.

While my attempt at a letter that I could share with all of you, one that would be therapeutic and helpful, might seem like a bust, I re-learned a lesson that keeps coming up.  My friend Tammy's mother Debbie has told me that the universe will send you the same assignment over and over again until you learn it by heart and this one is taking me a while.  IT WILL TAKE A LONG TIME FOR THE PAIN OF DIAGNOSIS TO EASE, if it ever will.

I keep thinking that my life has moved on.  That I am okay with poking my child with lancets and testing her blood several times a day.  That putting tubes into her body and giving her needles is just the way it is.  That it is what it is.  That the late nights are fine.  That watching my child go through her worst moments while feeling helpless is okay.  Then I will have a day when I get that feeling like I did on the day that we were diagnosed almost two years ago.

The best way I can describe it is this.  When they told us that Alison was in Diabetic ketoacidosis , the room felt like the air had been sucked out of it.  Everyone feels it differently.  But that's what it was like for me.  When it hits me, every once in a while, it feels like that again.

The one thing I would tell Diabetes is this though, someone like Alison, who is currently running around the living room, wearing a cape calling herself Super Ali, is hard to put down and hard to be down around your very own super hero!

"Dear Diabetes" - A Poem by Tanya Alexander-Thomas

We are happy to share another contribution in our "Dear Diabetes" Feature we were lucky to stumble upon. When we contacted the author about reprinting her "Hello, Type1" poem here is that Ms. Thomas had to say:

"Oh my....it was over a year ago that I wrote that! I had actually forgotten about it! I looked at your BlueHeelSociety.org site, and would be pleased and honored if you would share my poem. Thank you for asking permission! 

Sincerely, Tanya Thomas"

Hello, Type 1

by Tanya Thomas

I guess we haven't met.

But if you think you're taking over

Well, you ain't seen nothing yet!

We are the anchors, the fighters,

... The heroes called Mom and Dad.

And believe me when I tell you

We're the worst enemy you've ever had.

Our children are our lives

And we believe in support and prayer.

Though we don't have a way of beating you

They are constantly in our care.

We'll make sure the lives they lead

Are as normal as can be.

They will run, jump, dance and play sports.

They'll eat what they want,

and we'll adjust accordingly.

You may have been a set-back

But you don't have complete control.

Managing you and wiping you out

Has become our only goal.

We will fight you 'til the end

And we'll make a lot of noise...

We are a force to be reckoned with....

We are the parents of type 1 girls and boys!!

If you would like to submit your own "Dear Diabetes" contribution you can email them to us HERE

An Impromptu Blog...

I hadn't planned on writing a blog this evening but in our diabetes world there is little to get excited about or even be happy about.

However...

Today, I am happy, proud, excited and a little (just a little) bit sad.

My daughter has many pen pal Diabetes Sisters that she tries to keep up with. One in particular has iMessages so all day today they've been messaging back and forth. She comes downstairs and let's me know that she needs an insulin pump site change today AND... she's going to do it.

What?!?! "Yep, I'm going to do it!" okay I asked if she wanted me to draw up the insulin in her reservoirs and she said "no, I'm doing it!!"

okay...

I did end up helping her with that part...I mean with the air bubbles and all that but I showed her how to do it and let her do it. She rewinds the pump, fills the line and preps her tummy for the site.

She is shaking like a leaf. I show her how to pull back and set the site (she uses the Mio's), how to put it up against her skin, push it and then pull back again so the site stays. She keeps trying and is nervous so I offer up my tummy. This makes her feel so much better! (Nice for her to poke me for once!! and I'd do it a million times over for her!!)

Next up...her tummy! It takes her a couple of times to line it up where she wants it but...

she did it!! 

Twin pumpers! Nora and mine! 

I am one proud D Momma here!! I'm also a little sad...it means she is getting older, showing independence and replacing us. I know that this will happen eventually. I just remember a sweet younger Nora who asked her Daddy if he would always do her pump sites. His reply, "I'll come to your house when your in your 20's and do your site changes for you."

No need now.

My baby girl is growing up!

This also makes me happy. It means she is growing confident in herself to take on a responsibility like pump site changes. I can't take all the credit in helping her build confidence. I give credit to her pen pal Diabetes Sisters. They are there for each other when they are feeling crummy and having a bad D day and they are there to share the joys of big and little D accomplishments. For that bond I will always be grateful.

Tonight we celebrate D and all the good things that happen because of it.


Good job Nora, good job!