Rainbows, Unicorns and Great Big Gold Stars For An A1C Dream

In life I always...well, usually always see the positive but it's not just the positive, I seem to imagine the very best scenario and then some.  Which is all good UNTIL your super high hopes become smashed into a hundred tiny little pieces right before your eyes and your left feeling down and defeated. 

I know or I think I know it is better to prepare for the worst but hope for the best...but can you really do that?

NOT ME, I try, I really do, but I just can't!  I really believe that the best is going to happen for me in any circumstance that I'm in, like say going to the casino or buying a lottery ticket I really think I'm going to win, someone has to right? Why not me?  I have the need and the ability only to focus and believe that amazing, wondrous things are in store and though that might sound great that is not always good because that is not always the case.  Reality is not all rainbow and unicorns especially when we are talking about diabetes and the dreaded A1C. 

Our (Cara's) A1C appointment is tomorrow and yet again I have really high hopes, like super high hopes that our (Cara's) A1C will have gone down...like way way down, I'm hoping for say around a 7.5?!?! and anything more I'm going to be devastated and defeated. 

My brain is only imagining the wondrous things like how excited they (the doctors) are going to be when they see that number.  That's right they are going to be soooo happy!! I picture them saying things like: "WOW, you guys are just doing an amazing job"  "boy, I wish every parent was as great as you" "Good for you, the best diabetes parents that we have seen in a long time" or "it is an honor to be your doctor...thank you" They may even be a little concerned because with parents like us who needs doctors?  We might just get a BIG shinny sparkly GOLD star . They may not even say anything, one look at that number and they may just rise out of their seats in awe and with a smile on their faces begin to clap. You know just the basics...lol (trust me I know, you don't have to tell me...never going to happen...but how wonderful if it did)
 
Kinda silly and totally and completely unfounded as we have been fighting an A1C in the 10's forever and I mean FOREVER!!  Not just a few months...FOREVER! but I really hope that stuff like this happens...a CRAZY girl can dream, can't she?!?!

 I like hiding out in my happy happy love love we are awesome RAINBOW bubble, it really is a great place to stay but the trouble is when reality like the bastard it is comes with a sharp thin needle, kinda like a lancet and pops that bubble...watch out world and watch me fall into a hundred little pieces.

Fingers are crossed and I'm looking for my four leaf clover for tomorrow and again I think that I will be chickening out of going to the appointment and sending my husband.  He seems to live in reality and therefore has no bubble to pop...except for mine when he calls and informs me of our (Cara's) A1C. 

I'll let you know if we get the GOLD STAR to parenting a child with type 1 diabetes.

I know...reality Nic, stick with reality!

A Wonderful Thing

First, before I go on about the most wonderful thing please take sometime to enter my Supporting our Supporters Giveaway brought to you by Accu-Chek.  You could win a $200 Visa gift card to use however you want...just for being the wonderful supporters that you are ENTER HERE (hurry time is running out giveaway ends May 5th) 

Now onto the most wonderful thing, when Accu-Chek first contacted me about taking part in their We Got You Campaign I was over the moon about being able to run a $200 giveaway on my blog...that is a good chunk of change.  But that is not all that they offered me, they also gave me 2 more $200 visa gift cards and how to use the $400 was up to me!

I knew that I wanted to help people cover the cost of their diabetes supplies, that is a huge stress that we live with and I wanted to relieve that stress for another family.  I figured locally $400 could cover a month of diabetes supplies for someone in need and give them a little breathing room.  However before I made that decision I called a dear friend and mother of a T1, I told her about the generosity of Accu-Chek and asked her if she had any ideas for what I could do with the $400.  Nic, she said $400 will cover a YEAR of supplies for a child in need living in India. 

OH MY GOSH, I want to kiss her, I was ecstatic how could I have forgotten about Dream Trust 
A little over a year ago I heard about Dream Trust and I knew then I wanted to be involved and now thanks to my friend and Accu-Chek this could be a reality.

"The main object of the Trust is to help poor children with diabetes. People at large, in India, are not medically insured and have to buy insulin injections, syringes and other accessories required for treatment. Poor families find it difficult to commit a quarter of their monthly income for the medicine and healthcare required by a diabetic child. This is why they try to find short cuts which they wrongly believe will make treatment less expensive. Debilitating, social, cultural and economic factors in India continue to discriminate against women and girls in appalling ways. This is why, the trust gives just and deserving priority to girls. This project of sponsoring these children was conceived after we experienced two shocking incidents of losing diabetic girls. Parents of these girls had stopped giving insulin as they simply could not afford it any longer." (taken from the Dream Trust website) 

 The story of Sudha broke my heart when I first read it and unfortunately this happens more then not in a area where poverty seems to control every choice.  Sudha was eight years old and had just been diagnosed with type 1 diabetes when I met her. When she was discharged from the clinic, I counseled her parents. I explained to them about insulin and its importance for survival. I found Sudha’s poor and illiterate parents very attentive to what I said. Finally her father asked me, "Doctor, if I understand you correctly, does Sudha have to take insulin everyday for the rest of life ?" I nodded, "Yes". "What would happen", he went on, "if she stopped taking insulin?" "Well, she would go into a coma", I explained, "and if left unattended she would die". He nodded calmly and had clearly understood everything I said. I was happy that my counseling had had the desired effect. I gave Sudha a pat on the head and she left the clinic with her parents.
One month later, I learned that Sudha had died. Her father had quite intentionally stopped giving her insulin, knowing very well what the result would be. The logic of poverty had overpowered the logic of life.
  
I could not even imagine this life and I want to make a difference.  For only $400 the child gets regular monitoring, necessary health care and supply of insulin & syringes for a year.

The main objective of the Trust is to offer a complete healthcare to the type 1 insulin dependent, underprivileged diabetics especially children and with a particular focus on female diabetics.

	Ensuring survival of diabetic children
	Reducing the morbidity.
	Reducing the long term chronic complications.
	Rehabilitation , (Vocational training, employment, marriage).
	Creating better awareness & education of children and their parents (Picnics, etc).

Sponsor receives photographs, address of the child, family background and other detailed information.

I will be posting updates and information as they happen through my experience with Dream Trust

We are in the very early stages of getting involved, contact has been made and we are waiting to hear back from India where we will be connected with a child this is such a wonderful thing, I can't wait!

Questions For Medtronic

There has been an issue/question that has been swirling in my head lately, some days it pisses me off more then others and today I thought I would share.

It has to do with Medtronic...we love your pump, NO COMPLAINTS, and yes Cara LOVES your pink Mio sets but WHY in the hell are you charging Canadians $214.00 for a box of 10 Mio infusion sets and Americans $140.49 for the same exacted box of 10 Mio infusion sets ??  (there also is about a $10 difference between Canadian and American reservoirs)

That works out to be about a $83dollar difference for sites & reservoirs per order...I don't understand this.  And if you don't think this is a big deal in a year it adds up to about a $700 difference in price between people living in Canada and people living in the States.  THAT IS HUGE!! 

My husband and I thought to ourselves "Well, we are the consumers! It is time to start shopping in the states".  Living in a border city to the states we do this all the time, State side shopping is almost a hobby for some (not me but for some).  So we called up Medtronic to order the much cheaper but exactly the same box of 10 PINK Mio infusion sets from the American site.  We had it all figured out, there was not a problem with shipping (we mail things to family & friends in the States all the time and pick it up at a later date) however we were denied because we did not have an American doctors prescription for the sets.  There was nothing that they could do for use without an American doctor prescription.  Pure BS! Why would they not be able to use a Canadian prescription? If we travel abroad we are told to make sure we have all our prescription just in case we run out or need some new supplies when out of country.  So why can't they take this simple prescription for an infusion site? It's not even medication? 

So, when we were denied there I called the Canadian Medtronic supplier and told them that I wanted the same price as the American sets... which of course they just could not do!!  I asked the lady on the phone to tell me why there is such a huge price difference for the same exact diabetes supplies between Medtronic Canada and Medtronic America and she said "I can't answer that for you, I don't know"?

Has any one else noticed this, why would we Canadians pay almost $700 more per year for the rest of our or our child's life for the same exact product?  That's crazy...

and while we are on the subject of differences between the two Medtronics and the reason that we wanted to shop the American Medtronic in the first place before we noticed the savings, WHY are there more choices in colours and lengths in the States?  Cara living in Canada would love to sport a pink Mio set on her arm but that is not an option available to us, the tubing available in pink is not long enough to reach so she is stuck with tummy and tush sites in pink and really she has only allowed us once to do a tummy so her poor tush is getting over used.

  Well that is my 2 question for the day...

 

My Struggle With The Floating D

Today I had to make myself blog...just to write myself out of this writers block but a funny thing happened, it turned into something completely different.  This post was going to be a bullet point post of the things that have been going on here in the last little while, diabetes related of course... but it turned into a post about another D word. 

Man, does writers block suck!! and on top of not finding my writing flow (for lack of a better word, I will talk about that a little later on in this post) I find myself fighting bits of self inflicted frustrations with my writing because of dyslexia.

Dyslexia has haunted me my whole life.  When I was a child there was no real label for what I was going through, I mean, the word dyslexia was out there but the drive to label a child was not as present as it is today.  I struggled my whole childhood, I remember leaving my peers for special reading groups, asking to go to the bathroom or getting a drink of water when it was my time to read, I remember the little helpers that would sit next to me and whisper the words that I had become stuck on.  I specifically remember writing a test with a specialist while I was in school.  I clearly (and there is another word that I want to use here and it starts with a V but I just can't think of it or pronounces it, another issue I face all the time) but I *clearly* remember this test and the question "What time is it?" I had to label the time the clock was showing which I think I flunked...I still struggle with that most days, digital is this girls best friend.  There were questions where I had to read words like was and saw, thought, though, through...really basic words that we use all the time and then there were much more complicated words.  I remember the specialist looking astonished when I was able to read the more complicated words because I was stumped on the everyday basic words.  I believe it was in grade 7 my teacher told my mother at a parent teacher conference that I would not make it threw high school, I was just not smart enough!  My mother was devastated.  But it was a teacher in Grade 10 English, again at a parent teacher conference that confirmed my mothers understanding of what I was going through she said very blunt "you do know that Nicole is dyslexic, right?" I think my mother was relieved she found someone who knew I was not stupid, who knew I could make it, who knew I was JUST dyslexic and it was something that I will need to deal with and find tricks around my whole life.  By the way...to my grade 7 teacher...I made it to University THANK YOU VERY MUCH!   

It seems, when I'm tired, and what mom that gets up at least 2 times a night to check blood sugar is not? dyslexia has a way of destroying any writing I might want to do hence the lack of post lately.

It is and has been a huge source of frustration and when its at its worst, writing is put on hold, to come back to on a better day.  On a bad day the number of little squiggly red lines from spell check will have me shut down the computer.  I do LOVE SPELL CHECK, I would not be able to blog or facebook without it but I know by the number of squiggly lines that, that day is not a good day to write, kinda like today!

Spell check is a great tool that I use all the time but watch out when you get a list of properly spelled words from spell check...for example my spell check list for the word properly had properly and probably and property.  I needed to sloooowly sound the word out a few times just so not to use the wrong one.  I do this many, many times...there is one word that gets me EVERY TIME!!...but for the life of me and my dyslexia I cannot think of it at this time!! I bet my mom knows...

If there is a word I NEED to make sure is spelled and used right I will google it for the definition and right beside the definition there is usually a little icon that allows me to hear that word, a God sent for a person with dyslexia...I wish I could do that with every word but blogging takes me long enough! I type, I spell check, I fix, I type, I spell check, I google, I read over and over and over again and there are still mistakes that I will miss...UGH, I hate that!  Over time I have become semi comfortable with blogging with dyslexia.  It is still incredibly embarrassing some days when my mom calls me up to change the spelling of a word in a post and by that time the post has already had 100 hits...but what are ya going to do?


I'm a smart person...I am, really.  But if you see me without google or spell check, when I'm filling out forms in the doctor's office or at school for my kids you might think to yourself "Damn, did this women not even finish grade 3?"  and THAT right there is hard to deal with.  Peoples judgements of a condition that they can not see and do not understand...and I think we all know a little about that! I find myself apologizing often and that drives me nuts "Oh sorry, I'm dyslexic" when making a spelling mistake in public or asking someone to spell their name especially a simple first name.  

In high school I very rarely passed notes back and forth to my friends or wrote letters to people because of my spelling and if I did it would be extremely basic, I don't know what is worse seeming to have a grade 3 vocabulary or grade 3 spelling ability?  The more flustered, scared or tired I get the worse or stronger the dyslexia seems to shine.  In high school, Science class we had to read out loud...HORRIFYING...truly, because I know how to read, I'm smart, but on most days I know when I read I don't sound smart and what is worse to a teen then other teens in high school judging you!!  In high school when reading out loud I use to count the people ahead of me, then I would count each paragraph finding the one that was destined to be mine. (in order to spell the word destined and make sure I had the right word I had to google it, spell check was telling me it was spelled wrong but did not understand what I wanted to say.  Luckily the definition had an icon to hear the word)

des·tined/ˈdestind/

Adjective:

(of a person's future) Developing as though according to a plan. Certain to meet (a particular fate)

(Sometimes trying to keep the momentum while writing and then needing to break and find the word you want to use can completely destroy a post) 

Back to my story... I would practice my paragraph over and over and if there was a word that I did not know I would ask my friend (shout out to Hailey) sitting next to me (seating arrangements were very important to me in high school.  I very much needed to sit next to someone who knew and understood me and if I ever got stumped on a word they could whisper it to me) by my turn I would have that paragraph down pat but unfortunately the information that others were reading and learning prior to me reading, I did not hear a word as I was stressing over finding and reading MY paragraph.

Ugh... reading out loud was  horrifying...my heart is beating fast just thinking about it as I type. 

Another problem on a bad day...as I type my words now, they are floating...slightly, but they are floating and with every blink of my eyes I try to correct that movement and refocus...and on that word (refocus) a red squiggly line...pure frustration!

In my dyslexic brain words and not just the spelling can become locked up and lost.  Many times speaking or writing I will have a word that I would love to use, it is sitting on the tip of my tongue, I know the meaning, right down to the definition of the word and maybe even the way to spell the first few letters, just like the "V" word in my 3rd paragraph however I can not come up with it...it is lost.  Frustration builds with all the lost words that seem to be prisoner inside my brain, locked up unable to find their way to the computer screen or in speak.  Knowing what I WANT to say and trying to find the "simple" or accessible word that can properly portray the same meaning is so maddening...much is lost in translation.

I'm witty, I'm funny, I'm passionate but on paper or even in speech some days I'm half of that because my brain is on lock down. On a really bad day spell check can't even help me. Today was one of those days. 

And as for following up with people on their blogs...well, when I find myself struggling to write my reading suffers as well.  I may only be able to make it a paragraph into a blog post that I really want to read before my eyes are so strained I just can't focus on the words, almost like a sinus headache with a touch of dizziness and intense eye pain.  I remember one morning getting ready for school and eating my cereal, as a kid I always read the cereal boxes and on this morning as I turned the box to read the ingredients I realized or I had thought I had turned the box to the french side (living in Canada everything labeled in English was also written in French) As I'm unable to read french I quickly turned the box only to find another unreadable french side...What In The Hell? two french sides? as I turned to look again at the other side and this time REALLY focusing and trying to read it the words slowly refocused to words that I could recognized. Not being able to make out any words  has only happened to me that one time. 

And that is just the tip of the iceberg living with dyslexia.  It affects so many more areas of my life even parenting a child with type 1 diabetes.