TWCLB Is Heading To T.O. For the CWD FFL Conference

If you need help with the tile of this post let me translate for you:

The We CARA Lot Blog is Heading to Toronto for the Children With Diabetes Friends for Life Canadian Conference

and I can't wait!!

"Children with Diabetes (CWD) presents our Second Annual Friends for Life Canada conference! Join our international group of world-renowned clinicians, researchers, physicians, adults, children, and families with diabetes to learn the most current information in diabetes care. Attend educational sessions and get cutting-edge ideas for your family's diabetes management. Participate in parent discussion groups and find new, creative ways to help and motivate your children. Connect in-person with families you've met through the CWD online community. Watch toddlers and teens, young parents and grandparents, new diabetes professionals and practiced clinicians make new and lifelong friendships. This is a conference you won't ever forget!" (taken from the CWD website)

This will be my first diabetes conference that I have ever attended and as much as I wanted to head down to Disney with all the kids...Toronto will have to do!!

I can't wait to get my hands on some new and much welcomed D information and to meet some wonderful great people :)

Cara & Kirstin will be making the trip with me and I really think Cara is going to L.O.V.E being surrounded by children her age and others that have diabetes.  Her face just lights up when she meets anyone that has diabetes.

It will be a wonderful experience for her and one that I hope she remembers for a very long time.  I just wish I had a better video camera for all these amazing adventures that we have been going on lately.  

Kirstin is one of my non-D kids and she has a very important role and reason for coming with us.  Kirstin will be Cara's buffer. Although Kirstin is 19 months younger then Cara, she is outgoing and loves people and she is comfortable in any situation.  So we are going to "throw her to the lions" (if you will) or the FFL daycare in this case and show Cara how it is done!!

Hopefully this will help Cara feel more comfortable having Kirstin there.  She is just too shy for her own good, I don't want her to miss out on anything and with Kirstin there leading the way, I don't think she will!!

We are going to have a wonderful weekend!!

Pictures & blog posts from the CWD FFL  soon to come :)


Oh and btw our pumping cases are complete, everything is done and August 15th we will be pumping insulin :)  What a great feeling, all the nerves and anxiety are gone and I know that we can do this!! 
 

One More Day

Just one more day and I will meet a moment in time that I have been working towards for a very long time.

Just one more day and so many mixed emotions.

It's that feeling of knowing something big, humongous, ginormous is about to happen.  Every time I allow myself to stop and think about what will be taking place in one more day my blood starts to rush, my heart starts to pound, my stomach starts to turn.

I don't want to miss a moment, in one more day we will be living a new life with diabetes.  We will be met with new hurdles and we will share new accomplishments.  There will once again be many firsts followed by sheer panic and hopefully many firsts followed by pure joy. 
 
It's like being in the middle of a tornado, watching as it all begins to take shape and holding your breath until you know which way the wind will blow.

So many emotions for one more day, the excitement has shadows of fright.

Stress of the unknown: We have been doing this diabetes thing for over two and a half years now and in one more day I will be starting all over again, there are so many unknowns.

Overwhelmed: With one more day approaching there is A Lot to read, A Lot to learn and A Lot do and I feel completely unprepared and overwhelmed.

Excited:  I'm so excited for Cara, I'm excited to see the bruises fade, I'm excited for Cara to experience a whole new way of seeing diabetes,  I'm excited for her to feel the freedom and I can't wait for her to learn that food and shots don't go hand in hand.   

Emotional:  In one more day I don't know if I will cry with tears of joy and hope or be crushed by the feeling of nervousness and confusion.

Belief and Strength: I know that in one more day We Can Do This, I know that We Will Do This...I can't wait to get to that point of looking back and saying WE DID THIS!!

Support: I know I have the best support system in all of you and in one more day The DOC will be cheering us on and holding us up along the way.

In one more day, Wednesday July 27th 2011 (also Cody's 3rd birthday) Cara will be pumping saline with her new pink Medtronic Veo pink pump and I'm terrified.

Ice Cream with The Case Of The Stupids

**Caution, some extremely childish & inappropriate language has been used in this post please read at your own risk**  
 
One of the hardest things for me being a parent of a child who has type 1 diabetes is the close minded asses that are out in this word.  People who THINK they have a clue but have absolutely no idea what they are talking about. Unfortunately, many of these misinformed, misleading idiots have access to an abundance of people who are listening and "learning" from the nonsense & complete bull shit that they are hearing from them.

It is like a virus, hard headed people that are set in their untrue lies of beliefs and no matter how nicely and how clearly you make your knowledgeable, scientific truthful points which for the most part is coming from people that are actually living the life these ignorant individuals speak off, they just don't GET IT.  This epidemic is spreading and as we all know there is no cure for the stupids.

Case in point THIS ARTICLE, Pandering to Diabetics? You bet! spewed off by Wendell Fowler.

After many, many people shared their thoughts on this horrible article this was printed

his Ummm apology? article, Trying To Find Common Ground written by the same fool.

Obviously he did not GET IT!! 

I have taken all day to come up with something, some wonderful insightful comment, something that will pierce that hard headed skull and enter that self absorbed brain of his and I got nothing.  I have only come up with hurtful words and name calling. 


I'm pissed and I'm hurt and I'm so feed up with shit like this.

Type 1 diabetes is nothing to take lightly and I'm so sick of people thinking that it's some sort of joke and not a big deal.  Type 1 diabetes and our fundraisers are nothing to joke about.  The bottom line is we need fundraisers because we need money because we need A CURE or if not a cure even better TECHNOLOGY  and for the morons who find it funny that our T1 kids can eat ice cream or candy or Kentucky Fried Chicken....FUCK YOU!!

Ya that is what I came up with...not the most poignant words of wisdom but that's all this fed up mom has!!
A great big F to the U and as The Southside Times likes to say, this article reflects my own opinion and I have a right to express my own opinion!!

But really,  how hard is it to look up who the fundraiser is supporting, do a little research, then develop your opinions around actual facts.

How hard is it to share positive, helpful information instead of smearing negative ideas of who should host a diabetic fundraiser formed out of fictional ideas of why this would be a better fit.

How hard is it to KEEP YOUR FUCKING MOUTH SHUT WHEN YOU HAVE NO IDEA OF WHAT YOU ARE SPEAKING ABOUT!!  In Wendell Fowler case it seems really hard!!

My letter to Wendell Fowler:  HERE IS THE LINK
There are no words to express the hurt and the sheer disgust I feel for your articles.  I'm shock and appalled   that people are allowed to write and publish this nonsense in a newspapers.  People have taken the time to share the truth about diabetes, and yet you have not taken the time to make an effort to listen.  I will not waste my time on trying to educate you on diabetes, you have already been schooled.  I will not try to make you understand what life for my child, a child with type 1 diabetes is really like because that is not what matters to you Sir.  You saw a sign for a fundraiser, you took a stance and that was that!!  I will however leave you with this, next time you are inspired to write about a topic that you have absolutely no clue about please think twice and trash the story because that is where this story belongs!! 

Oh and then there is this:

It's Pink and It's Here...Medtronic Veo

First, thank you to everyone for you comments on my last post. The Dreaded Butterfly

To  Denise:  I'm so sorry to hear about the cath....poor bean and mom!

To Heather: Yes Cara's  Lenny is larger then the average :) Cara is one spoiled little girl and she seems to get little extra's sometimes.  Lucky Duck.

To Joanne:  That so sounds like something I would have done or something I should have done!!

Today is a much better day, our Pink Pump is HERE!  It arrived this morning.  All the tears and sadness from yesterday are gone and we are all smiles today...Tis the roller coaster of Type 1.

Check out THIS post to see what happened when the "purple" pump came.  Oops!

The Dreaded Butterfly

So we made the switch to a new doctor, we have the pump coming and the start date is set, Cara is growing and healthy and laughing and everything is moving nicely and...
Oh ya, one small detail that has been over looked...she has not had a blood draw since her T1 diagnoses in Feb 09 at the age of 3!!

CRAP!! 

I knew this day had to come, I knew that we needed to get this over and done with before we could move on but tell a 5 year old that who is terrified of the dreaded butterfly.

I remember it so clearly, like it was yesterday.  Poor thin, lifeless Cara lying on a E.R. table while the nurses explained this will only take a second and you will only feel a little pinch...look it's a butterfly!  You like butterflies don't you?

She lied there, motionless as they poked and prodded Cara with that damn butterfly over and over again trying frantically to find a vein.  She just lied there and did nothing...

3 nurses and countless tries later a good vein was found.  But that was not the end of the dreaded butterfly!!

The first night in the hospital Cara endured many pokes and needless, more blood work and more butterflies. (Her blood sugar was so high (53.2 mmols or 957) that it would not register on the meters it would just read HI)

Nurses that were just there to talk to us had to stand with both hands opened and straight up in the air repeating over and over "we are just here to talk no needles".

At one point Cara looked at me with the most pathetic look on her face and she said "I hate butterflies"  I will never forget it!!

fast forward to today.  I was hopeful that this was going to be a positive experience, maybe she had forgotten about the scary butterflies, maybe she has matured in the last 2 1/2 years to learn to cope with scary situations...maybe I'm just full of shit and have no idea what I'm so hopeful about because in reality there was not way this day was going to end any different then screaming and yelling and kicking and tears.

At 8:15am we arrived at the hospital where we spent 45 minutes talking and playing out the scenario that was about to take place.  We made a doll, named Rapunzel with red hair(?) and practice doing a few blood draws, we applied "magic" cream to Cara's arms that numbed both arms (just in case) so the needle would not hurt as much.  We went through some comfort holds to use during the procedure and we explained over and over to Cara what was about to take place.

9:30  and it was time!! I took her confidentially back to our D clinic room and the second she saw those two lab people standing there with their great big smiles, she started screaming bloody murder and I knew this was going to be a fight...after all, she is MY DAUGHTER!!

We literally had to pull her **NICELY**  into the room, I sat down with her on my lap and there was just no calming that girl down...she was screaming and kicking and pulling and fighting... FOR HER LIFE.  We decided the safest and quickest way to get this done was to lie her down....HOLY BAT SHIT! Cara was not having that!!  I tried to explain to her I can sit with her on my lap but she just need to hold still just for a little (please Cara for the love of GOD, HOLD STILL).  I don't mind if you scream, yell, call people names...whatever makes you feel better BUT just sit still!!

So much for that, as they pulled the reluctant monkey monster away from my neck...my heart sunk!!  I did not want to participate in this any longer... I wanted out too!!

There is nothing worse for a parent to hold down your child while someone is shoving a needle in their arm (causing them pain) as they plead for you to take them home and make it all stop.

HOLD IT TOGETHER MOM...

As I looked around the room 2 nurses (one male) holding Cara down trying to talk her down, One trying to get the poke and me holding her legs, talking to her, rubbing her chest, looking her dead in the eyes trying desperately to let her know that I was there and she was safe and everything will be OK as soon as it is done. She began screaming "please mom take me home, I want to go home please mom!".  At that moment my eyes began to swell up, my chin began to quiver uncontrollably and I was about to lose it when the words hold it together lady repeated over and over in my head.       

1,2,3, and finally 4 vials of blood taken and she was release back into my arms and did not want me to put her down.

As we drove away from the hospital I stupidly started to reflect on the events that had just occurred.

Note to self:  tears in the eyes + driving =  not a good or safe thing...because you can't fricken see a thing!!  I quickly gained a little composure and regained my vision.

She is smiling now, she is happy now and I don't think that the poke actually hurt thaaaat much. I think it was the memories of the fear and the emotions of the last time she was poked and prodded on diagnoses day 2 1/2 years ago when the dreaded butterfly was near.

We have since talked it over and next time she promises to sit still....

However I did over hear her playing doctor with Kirstin and Rapunzel and while preparing Rapunzel for her blood draw Kirstin was holding her hand and Cara said "OK now this is going to super-de-duper hurt" and then poor little Rapunzel cried.

Cara, Rapunzel, Lenny, her pin wheel and a great big smile :) showing off her battle wounds

This day has taken a lot out of Cara and her mommy!! (It's a little hot in here)

 

3am Phone Call When Your T1 Is Sleeping At Nana's

Last night Cara got the chance to sleep over at Nana's and she was over the moon excited.

Having 6 kids it is always nice when the grandparents take one for the team and take a kid or two for the night.   

A change in atmosphere and getting away from the insanity of their siblings is a special treat.

Most times Connor and Kylie are the "Lucky Ones" as they are 9 and 7 and they have a lot of fun "hanging out" with their grandparents.  Cody is 2, still in diapers and has naps sooooo it's kinda a pain to do anything with him, Kirstin is 4 and still needs that constant help and she is always in your ear soooo a little annoying, Kailyn is 14 and really is not interested in sleepovers with the grandparents and Cara, well she has type 1 diabetes soooo very scary for grandparents and us!!

Don''t you shake your head in dismay at me...Cara  has on a  few occasions slept over at Nana's and I think once at Pepe's & Grandma's house but mostly when my husband and I really need a babysitter for the night.

But yesterday was different, yesterday Cara was the "Lucky One", she was spending the whole day with Nana, swimming in her pool and then spending the night and I was a nervous wreck.  I'm not sure if it was because of the swimming all day in the hot sun, or her just getting over a tummy bug so her numbers are a little lower then normal or just my emotional state right now with T1.

BUT with a great big kiss and a "I will miss you mom" she went running off without a worry or care in the world...ahhhh to be young again!!

I was FREAKING out, obsessively, every minute felt like an hour  but my husband kept me calm with the thought that we are only a phone call away.

Yes, if there is any problems all she needs to do is call.

We called a few times to check in and Nana was doing a great job giving carbs for the extra exercise, she even corrected a low (2.3mmols) without any issue.  She called us at every meal time to make sure the right amount of insulin was given and we got to talk to Cara who was just beaming over the phone.  I'm sure she was having a great time.

So when the phone rang at 3:00 am in the morning my heart dropped and I thought I was going to puke.

I made my husband get the phone...."Who is it" I yelled??

A few seconds later I had my answer

It seems a few boys were having a sleepover and decided it was a good idea to call my 14 year old daughter at 3 am in the Gosh darn morning...ugh!!  You have to be kidding me, I think my husband and I fell back asleep finally,  2 hours later, after our hearts stopped pounding out of our chests...  

Hats off to you amazing mommas who are dealing with camp and T1 Reyna, Misty, Heidi and Meri  I bow down to your greatness and nerves of STEAL!! Oh wondrous ones, please show me the way of T1 dominance. 

AND

On a more serous note I would love to ask you all for your thoughts, and prayers or hugs and good vibes, and your finger crossing luck for our dear friend Laura and her daughter Sophie who is going through a very tough time right now.  We love you and your whole family and thinking of you night and day!! 

Bubble Gum & Nail Polish

As exciting as yesterday was, something was just not right. 

As elated as I was to finally receive our new pump, I wish we never needed it to arrive.

As much as I can't wait to begin a new way of kicking D's butt, I had a sinking feeling all day.

As all the smiles and laughter was shared that day I had to hide the frowns and sadness.  

To see your 5 year old holding a plain brown box of medical equipment as if it was a magnificent gift wrapped with a beautiful bow on Christmas morning...that stings a little.

To know that this technology is what is keeping your child alive every single second of their life...that tugs a little.

To realize that this is the start of Cara's "new" life, her whole life with her and her pump...that breaks my heart a little.


I just keep thinking PINK is for bubble gum and nail polish...

My sweet, sweet Cara!

Christmas In July Gone Wrong

Today was a very exciting day it was just like Christmas but in July.

With a ring of the door bell all 6 kids went racing to the door to see what it could be.

A great big brown box with the words Medtronic written across it brought smiles and giggles out of everyone in the house. 

Who says you need wrapping paper?

Cara was beaming as I ran for my camera...this was a moment that I wanted on tape. 

This is big for all of us especially Cara and something that we have been waiting for, for a very LONG time.

Cara so excited

everyone got in on the fun

and at the bottom of the box...the pump

So happy and hardly able to contain herself she started to open the pump box ANNNND....

It is purple NOT PINK!!

You may think that her reaction is a little ummmm how do you say...spoiled brat-ish but you have to realize she had been asking for this PINK pump for EVER and it was the only thing that she cared about, it HAD to be pink!!  Not to mention she does have to wear it 24 hours 7 days a week sooooo she better LOVE IT!!

A quick search for our Medtronic reps number and all is good... a brand new pink VEO is on it's way.

Some Great News To Share

I have some wonderful news today.

Want to guess what it is???  

I'll give you a hint...

It's pink

We have been waiting for this for over 9 months now

It will be here in a few days


Any guesses???



Here it is...our Medtronic Veo has been ordered, the pumping classes have been scheduled and WE can't wait to start PUMPING!!

 
 I can't believe this day is so close, in Mid August (August 15th to be exact) Cara will be pumping and all my hard work and crocodile tears have paid off.   It just goes to show NEVER give up and NEVER take NO for an answer when a YES is your only option.  

YOU CAN DO THIS!!

We CANT WAIT to step foot on this new path on our T1 journey.  It has been a fight to get to this point and I thank you all for you support that held me up and kept me going after what I knew was best for CARA.

I'm so HAPPY and most importantly so is CARA :)


I'm currently reading Pumping Insulin: Everything you need for success with a insulin pump or as others call it the bible for pumpers.

Blow Your Mind

I have a very simple working brain...if you don't already know. 

and because of this, many times, things will just BLOW MY MIND.  For example a few early mornings ago Cara walked into my bedroom, I got up and tested her blood sugar before "they" headed down stairs for breakfast and as the drop of blood hit the strip and the numbered appeared K.A.B.O.O.M ..BLOWN MIND!!

How in the hell does one drop of blood

gets transformed into a number that we trust and rely on to keep our T1 kids healthy, safe and alive.

never this wonderful number of course!

 

All because of one little strip and some great big technology.

Now, how in the hell does this all work? (rhetorical question!! please do not leave a long, confusing comment telling me exactly the ins & outs as to how this all works)

I'm just happy to have my simple mind blown with this wonderful technology  :) and quite thankful!!

Sorry About The Unneeded Picks Non-D Kids

Kylie is in bed with the flu,  the poor kid can't even move...she feels so sick.  For two hours last night she lied lifeless watching t.v. on the hard wood floor in the family room because she knew any movement would send her running for the toilet.   

She has had dark circles under her eyes for days now,
she has not been her cheerful, helpful self recently.  She has been very cranky  and short tempered
she is extremely tired, she is just whipped out and sleeping constantly
and yesterday the dreaded vomiting started

and the second that started that little voice which is stuck in the far reaches of my head, that stupid little voice that is constantly looking for ANY signs of type 1 diabetes in my non-D kids started making his way louder and louder to the fore front of my reality.

"Maybe it is type 1 diabetes" he said over and over and over again in my head.  I tried as hard as I could to shut out that damn broken record knowing that not all the signs are there, knowing that I was 99.9 % sure that she just has a tummy bug but that loud mouth little bugger is straight up persistent with his .1%. 

The only way that I knew to stop him was to prove it!!
And how does one go about this you ask?

Well it is as simple as a blood sugar check and in 5 seconds with a 5.1mmols reading the voice retreated back to his tiny hole in the very depths of my brain...still there (of course) but easily drained out with the booming noises of every day life.

Just waiting for the next time Cody asks me for another juice after his second cup in row,

Just waiting for the next time I see Kirstin running for the bathroom 1 too many times for my liking,

Just waiting for another flu, another super hungry kid, another growth spurt, just waiting to drive this mom of 6 crazy with the thoughts of another diagnoses.  So I'm sorry kids for all the unneeded picks but it's the only way I can stop that voice and keep me from going nuts with worry...until the next time.

I know that this annoying and relentless thought for me has become reality for many of you and that just breaks my heart.  I think of you often and how strong and amazing each and everyone of you and your children are.

...and that is why I don't do breakfast insulin

We all have our good qualities and our not so good qualities.

Some of us are really good at somethings and others well, they just have no clue.

and that is OK!!

Around here, I'm not so good with the bills and the "math" part of living, sometime #'s just don't add up in my head.  And we all know that spelling and grammar is not my strong suit. But boy, can I clean...not very often  mind you... BUT when I clean boy, I do an amazing job!! and muti tasking I ROCK at muti tasking!!  If I do say so myself.

I'm pretty good at doing night time checks, I don't mind (most nights) waking up at 2:00amish to check blood sugar.  My husband on the other hand would sleep through a night of BEEEP BEEEP BEEEEEEEEP in his ear.  So that is one of my jobs.

and in return my husband does the one thing that I'm not the greatest at... morning time.  That is right, I am not a morning person!!  I hate getting up early, I always feel soooo sick, and I have a fog about me...I just can't think right in the morning.  So my husband does breakfast with the kids every morning.

However Sunday morning was a little different, I woke up early...feeling good!  aaaaaand I did breakfast with the kids.  You know ladies we need to switch it up once and a while!! lol

I gave Cara's Levemir checking twice just to make sure I had the right amount, I measured the cereal, I counted the carbs, I subtracted what Cara did not eat, I multiplied her carbs by her insulin ratio, then I added .5 units and injected....HOLD UP. WAIT A MINUTE. I MULTIPLIED!!

That's not right? I multiplied when I was suppose to divided the carbs by the insulin ratio.  Somehow in my non-mathematical morning fog brain I did not notice the huge difference in numbers.  The calculator gave me an answer of 212 point something and I somehow saw 2.12.  It should of been 0.7something.  So I gave her 2.5 units she was suppose to get 1.5 units. (in the morning we add an extra .5 on to her insulin.  Don't ask, it just works and because we are STILL using pens we need to round up or down to the .5)

Funny thing is it took about 15 minutes for me to wake up from my morning fog and that is when I started to question how in the hell can Cara get 2.5 units when her ratio is 1:17 and she only ate 15 carbs...HELLO SMARTY PANTS!!

NO MORE BREAKFAST INSULIN FOR ME!! sorry dear husband but we all need to stick to what we are good at :) and I will have to stick to what I'm good at...sleeping in!

Oh and not to worry I just force feed Cara a chocolate chip muffin to cover the insulin. OOPS!!

If you would like to recommend a T1D book that you loved please click the link and leave a comment.
 

Getting BOOK Smart? READ THIS!!

I'm looking for a little more knowledge,

I'm looking for a or a couple good books to read,

I'm not a reader typically, o.k.very rarely, well... I should say almost never do I read books.  I really could not tell you the last time I actually finished a book.  I want to, I really do but I'm more a listener.  Listening makes sense to me, that is just how I learn, it seems to stick if I listen.  It gets all mumbled jumbled when I read.

BUT I'm going to give it a shot because knowledge is power and when your fighting T1 you need all the power you can get.

SOOOOO my "sweet" DOC what book/books would you recommend for a mom with a child with type 1 diabetes about, of course... type 1 diabetes?

I'm kinda looking forward to this, something to fill my summer with and thank you in advance :)

Maybe I can do a book review or at least little updates throughout my summer education!

The Feelings Gone...Please Come Back!

The kid that can feel a slight low like 4.9mmols (88.2) blood sugar just ran in the house after riding her bike outside for a little while and said "Mom, I feel low" with a great big smile on her face.

O.K. I thought to myself (in the millisecond lighting speed conversation I have in my head when dealing with type 1).  Snack time is not for another 30mins BUT she has been playing outside...so I said "go get your meter and check your blood sugar"  She is 5 now and we want her to take charge of diabetes.

and in a very quick response she said "I don't know where it is"...meaning you go get it!

O.K. (I again thought to myself) time to get my ass up and look for the damn meter...grrrrr I hate when diabetes demands me to stop what I'm doing to pay attention to it, can't it just leave us alone...we are busy!!  (I'm sure all the PWD that are reading this are thinking to themselves, ya tell me about it!!).

As she started skipping her way behind me I thought again to myself ,well I guess she is just kinda hungry and wanted a snack because she defiantly was not acting LOW.  Sometimes Cara uses T1to her advantage, she is a clever kid!!

I grabbed the meter, poke the finger

5...4...3...2...1.... 2.7mmols (48.6)

WHAT...OH SHIT!! and the mom-o-meter is turned to panic mode.

You see, we have not had a lot of experience with the 2's.  Cara seems to catch anything in the 4's and sometimes 3's but never 2's.

Our last experience with a 2 had me in tears the lowest of the low and had Cara on the ground unable to walk.

This 2 was way different.  I don't know the difference between 2.7 and 2.3 but there seems to be a lot...

A juice box and flakie later and she was ready to play outside and I'm left feeling not so secure about her ability to feel the lows as I once was.  I just hope that "feeling" comes back really soon and that it is not gone!!

Cara loves passion flakies 28grams of carby goodness

Avoiding The WHYS

I'm guilty...

I hid,

when I should have stood up and stepped up.

I'm not strong right now, I feel weak and defeated like a little girl curled up in a dark empty corner just waiting.

I'm waiting for the strength,

I will step out,

I will once again own this.

but for now I'm beat with frustration and questions

I have been knock down one to many times by the numbers.

That is why I'm avoiding the WHYS?

They are what holds me down.


The whys are no longer the question they are meant to be

they have become the blame I feel.

As much help as our wonderful nurses at the clinic have been, I avoided their phone call the other day and that is why I got this message on the phone because I did not answer the phone...I just couldn't.


I did not want to hear the disappointment in their voice again when I told them the numbers came out differently then what they expected.

I did not want to hear the "hmmmm, OK"... 

I did not want to hear the confusion.

I did not want to hear "I'll look this over and give you a call" or "I'll talk with the other nurses and we'll get back to you".  I wonder what they are "really" saying??

You see, they are working overtime with us, trying to get Cara to where she should be.

They calculate, they configure, they manipulate, they put all their education and all their years of knowledge/experience to work and when the numbers don't turn out the way they expect it to or the way it "should" the only person they have to look at is me and ask the question WHY?

WHY?  How many carbs did you count for that meal (like I don't know how to count carbs)

WHY? What time did you give insulin (I have explained over and over we dose after breakfast, during lunch and after dinner.  They really don't like that because we get a lot of spikes but I explain to them we NEVER know how much she is going to eat.  

WHY? Did you remember the correction (when numbers don't add up they always think something was forgotten)

WHY? How much insulin did you give at that meal (after this question I usually hear the calculator going, checking to see if I figured out Cara's ratio right, that really pisses me off some days.  I know how to add and divide on a calculator...thank you very much!)



WHY? How many carbs where given for that snack (This has always been a tricky one for us, the nurses do not like us "feeding insulin" however if we don't keep her tight as to feed insulin she is HIGH until the next meal time.  So we are always tweaking her snack amounts and that is just frustrating)


These are all very logical and helpful question when trying to figure out carb ratios and insulin doses and I know they are meant to knock me down but sometime all I hear is...

WHY? do you have any clue as to what you are doing??  

I'm just burned out, it has been about 9 months of intensive logging and talking and emailing back and forth with the clinic and we still are not where we "should" or want to be.  We keep going around in circles, I keep thinking what the hell I'm I doing wrong? and they keep asking WHY?. 

We know what we are doing, they know what they are doing but sometimes it does not translate into good numbers for Cara...WHY?

I have no fucking clue?

So I just needed a little break, and that is why I did not answer the phone.  This weekend I'm not listening to the whys?  because I feel like that question is not a question at all anymore I feel like that question has turned into blame.

A Little Hope For Our Pump Dream

1st off this Canadian blogger must say HAPPY CANADA Day/WEEKEND!!

 We are going to have a great long weekend.  But what is more exciting then the long weekend will be the Monday after...

No, No I'm not crazy!
On Monday we are getting a phone call to make an appointment with our new "endo".  That' s right everyone that has been following this journey, our plan might be back ON.

Let's review, shall we?

A while back we had an "endo" appointment that did not go so well, I was crushed.  We actually were having many, many endo appointments that were not going so well, which had lead to 3 A1C results in the 10's.  Not a good feeling as a parent at all!

After every appointment we would work our butts off with our nurses trying to figure out just the right dosing and to our dismay high A1C's every time.  Nothing seemed to be working, we were frustrated, our nurses were frustrated... but in the back of my head I had a plan and everything was going to be alright.

My plan was to get pumping during the summer....this was my saving grace...THE PUMP!!

So we did pre-pump, we met with all the reps and I was ready to GO and

(input tires squeal here) ... our A1C was over 10 and for us in Ontario if your A1C is over 10 the government will not cover the cost of the pump.  You must have 3 A1C numbers lower then 10 = 9 months of less then 10 in order for the pump to be covered.   I could not believe it!!

All these years people telling me the A1C is only a number, it's not a report card blah blah blah...well someone forgot to tell the Ontario government.

I received a lot of support from the DOC knowing how crushed I was.  A few tears and a few emails from Canadian T1 mom's who knew what I was going through and there seemed to be a light at the end of this tunnel.  They informed me that all I really needed was a letter from my Doctor stating that we have been very active in our daughters care (which we have, 100%) and that the pump would help us achieve our goal of an A1C under 10 (which I believe whole heartily it would).

I was beaming...wonderful a way around a nonsensical rule.  So with my figures crossed our nurses went to work getting all the paper work filled out and ready for the "endo" to sign and guess what the man would not sign them.  He said no way, we wants Cara to be more stable on shots before we move to a pump.

BULL SHIT!!

So I did what any parent of a child would do, I cried and then I left the ass (I say **ass** as a pissed off pancreas, I'm sure he is a great guy outside of the diabetes world).

Only problem was I started hearing people talking that it would be nearly impossible to see another "endo" in our clinic (there is only 1 pediatric endocrinologist clinic in our area, with pediatrician as our acting endocrinologist).  I guess they don't like people jumping from one doc to another.

So again...I was feeling lost BUT I was not giving up this fight for a pump.

I went straight to my family doctor, asked for a referral to another "endo" in our clinic.  I called the nurses at the clinic so they knew that the referral was placed and guess what???? Oh and by the way our nurses are 100% behind us in ALL our decisions that we have made, they have been there with us and they GET IT!

Yesterday I received a message from one of our nurses on my phone saying that on Monday I will be getting a phone call to make an appointment with hopefully the doctor that will soon be our new endo!!  I was so happy to hear this message.

So there is a little hope.... my plan can still have some life after all and we can get poor Cara out of this roller coaster ride of numbers and high A1C.