The We CARA Lot Blog:

February Is Almost HERE

2012-01-30T10:40:00.001-05:00

That dreaded month, February is almost among us.

Pro:
That usually means a wonderful family trip to celebrate All OF OUR hard work ass kicking amazingness dealing with D for one more year. These family trips give us all a break from the every day of diabetes, as much as a vacation can...of course type 1 is with us, it always will be, but it allows D to be slightly less harsh and sucky! It turns something negative into a positive and that is always good to do!

Con:
February also means every single damn emotion that I like to hide deep and far will some how make its appearance at some point within this month. I HATE this about February, I could be doing anything...like making lunch for Cody while the kids are at school and I will start to think about what our life was before counting carbs, giving insulin, checking blood sugars, syringes, pumps, insulin, fighting over food, mood swings, highs and lows, ups and downs, hospital/D clinic visits, worrying, worrying and yes, more worrying.

Boy, to think of how easy it was to make a fricken sandwich for goodness sakes...the little things that we all take for granted every day of our lives they seem to hit the hardest this month when you reflect on the impact D has had on them.

The emotions of this month is truly one of the most complicated things to deal with. The mixed emotions can just drive you nuts, you think you are actually going nuts. You grieve but your child is not lost, your happy that your child is alive, healthy and happy but your sad and terrified that D is there every day 24/7 just waiting for the one moment that you might for one second lower your guard, your happy for the amazing people that you have met along this journey, but your heart aches for them knowing what they are going through some days, you are hopeful for the future that one day maybe a cure or amazing technology but the future also brings fear of the unknown and possible fatal complications of this disease.

February 13th will be our 3 year mark living with Type 1 Diabetes, that means Cara will be living with diabetes for half of her life (yup that really hurts too) and this year there will be no family trip. This year we will be focused on moving and a new blog I have started for that journey. Don't worry I will never forget about you my DOC however you may enjoy checking in on us over there once and a while. I'm sure diabetes will make its way into that blog through pictures or clips however the focus with be on making our new house a home.

Check it out and follow us on our journey

Buy A House Create A Home

A Win Is A Win, We Are In Range

2012-01-21T13:25:00.000-05:00

We are BACK in RANGE... finally!!

What a slow and frustrating process that is.

When blood sugar numbers go crazy out of the blue T1D mom and dads do too.

Every time that damn meter came back with the wrong answer I wanted to throw the damn thing out the window. At one point I looked at my husband and asked him "do you think her meter is broken, this is ridiculous"

It wasn't the meter!

Trying to decided what needs to be tweaked and just how much, it is all such a guessing game. When I was little one of my aspiration when I grew up WAN NOT to be a doctor or a nurse...I hate this stuff!!

With Cara this time it was not just one thing that needed to be changed just once. It was EVERYTHING over and over and over again. Each change getting us closer little by little to where we needed to go, but UGH so frustrating.

First, of course we went after the site. When numbers go nuts this is the first thing we blame. After we changed what we were hoping was just a faulty site we saw no change in HIGH numbers so next in line on our list of conspirators was the vial of insulin. This insulin was near it's end (a vial of insulin last about 25-27 days out of the fridge once opened) so we gave a new vial a try. Fingers crossed it would be that simple. Unfortunately the insulin was not causing the HIGHS.

And that is when the "FUN" began, the game of tweaking ratios, recording numbers, following activity, just watching and waiting to see what would happen was on.

A major change in Cara's bolus and basal rates were needed, with breakfast and lunch seeing the most changes. Breakfast and lunch increases are always the scariest for me because I was sending Cara to school after make adjustments (increasing insulin) and that is NEVER a comforting feeling. The phone was glued to my hip, the funny thing is when the nurse did call she was call because Cara was HIGH and by the end of the 2 weeks I was almost hoping for her to call because of a low...almost.

But this weekend I'm so excited to say that FINALLY WE ARE SEEING MUCH BETTER NUMBERS, not perfect but I will take it. Some changes still need a little perfecting but it is a great feeling know we are almost there.

A very important thing that I learned early on in this roller coaster with diabetes is to hold on tight to successes, no matter how small, a win for you is a win. Enjoy them, Note them, Celebrate them.

Today I feel good, today I win!!

Until next time...

Out The Window And Back To Bed

2012-01-18T10:14:00.000-05:00

It is only 9:30 in the A.M. and I already have written it off.

At this point I just want to go back to bed, but I can't :( I have a little guy waiting for me to get out of this funk and get my shit together.

What is on my mind today:

Connor has a project, "Wind Power" and I have no idea what is going on with it and really neither does he. What the hell is up with partner projects at school anyways? This is the second partner project that he was assigned and they really just don't work for a kid with a learning disability. Pure frustration.

The new year has began and I have not yet gotten a 2012 calender and I'm lost. I don't know who is coming and who is going. We pre-paid for a Subway lunch for the 18th and on the 13th my dear Kylie said "mom today we don't need a lunch it's Subway lunch today" Ok then, no lunches needed and at 12:01 I received a phone call " Hello, it's Mrs R from blank blank school, unfortunately today is NOT Subway lunch so Kylie and Connor do not have lunches for today" UGH you have to be kidding me, this is what happens when you listen to a 7 year old!! Luckily my husband was around and he dropped off lunch for the kids.

Today I got a phone at 9:01 "Hello, it's Mrs R from blank blank school, I have Kirstin in the office and she is a little upset because today is pajama day in her class "(she was dressed in "normal" clothes) UGH... you have to be fricken kidding me!! Luckily my husband had not left for work as I ran around looking for clean pajama's which was nearly impossible because for some reason my damn almost new dryer is not heating up and DRYING therefore NOT WORKING. In a family of 8 not having a working dryer is not a good thing. I did finally find a pair but UGH...

and ya I know your thinking it, the school should and probably does have my home phone on speed dial.

To top it all off Kailyn left for school this morning without emptying the dish washer and now I have dishes filling up my counters...which drives me NUTS! I just filled that damn thing yesterday...UGH. My upstairs bathroom smells like wet dog because dumb ass got her leach tangled up under the porch yesterday afternoon and ended up rolling around in the mud which ended up in an impromptu bath for the big hairy mutt. Cody did think that it was funny when Reesey "made it rain" me not so much. The girls decided to play "dress up" last night and now they have clothes on the floor from one end to the other. So I plan to be cleaning ALL day today.

The weeks nonsense is adding up and I'm falling apart.

But even with my whole world falling down in complete chaos around me all I can think of is Cara's damn A1C flying out the window...hurry and shut the F'en window. Her A1C is already in the toilet and now after my post yesterday about the wonderful night she spent the whole day at school high, when she came home she was high and when she went to bed, well a little better but not in rang. Screw the 3 day rule I just can't wait. We added even more insulin to her breakfast and lunch for today in hopes I get some change.

Hope someone out there is having a better day!!

And The Meter Says...

2012-01-17T09:28:00.001-05:00

Yesterday was just one of those days you want to whip the meter right across the room screaming at the top of your lungs while pulling your hair out.

Ya, it was that GOOD!!

Cara was in the 20's all day long. No matter what we did, change out insulin, change out a site, correction, correction, correction doses of insulin...and nothing, basal changes as well as every single carb ratio changed, N.O.T.H.I.N.G!!

That damn meter had the nerve to talk to me yesterday.

"HI" he said
"FUD" (f*ck you diabetes) I said

All Cara wanted was to go to school. I guess when you are in grade 1 school = fun and home with high blood sugar=sucks the big one.

UGH...the frustration, I'm still exhausted! I still don't know what the hell was going on ALL day yesterday but I'm happy to say we are now IN RANGE...all night and this morning all beautiful numbers.

Today I'm a happy mom, yesterday not so much

An Update: Diabetes Jokes Are Not Funny

2012-01-16T09:44:00.001-05:00

A few nights ago I posted this blog post You Win Some You Lose Some...But I'm Really Getting Sick Of Diabetes Jokes On T.V.

It was about a not so funny joke that was told on the season opening of Are You There Chelsea? on NBC

The joke went something like this (which I messed up on my previous post, my apologies. A night of sleeping on the post before I wrote it and the words changed in my head.)

The joke played on two very sensitive subjects 1. Eating cupcakes (in this case) causes diabetes and 2. Which by the way I thought was the least tasteful of the two jokes. Laughing at the very real and very upsetting complication of this disease, amputations with the joke... but it's OK because she has a good doctor and still has both her feet.

So very wrong and this so needs to stop! Diabetes is not funny and it is NOT OK to make jokes about.

Here is a facebook link that I was asked to share. The page was started by a mother of a child who has type 1 diabetes and who has had enough of thoughtless jokes.

"All we are hoping to do is create an awareness about exactly how much of an epidemic diabetes is...and stand up and say "no more". Diabetic jokes are NOT funny. We have power as an audience, and we will use it if we are not listened to. (taken from NBC 346 Million People Deserve An Apoloy fb page)

Here is the facebook link

NBC 346 Million People Deserve An Apology

You Win Some You Lose Some...But I'm Really Getting Sick Of Diabetes Jokes on T.V.

2012-01-14T12:54:00.000-05:00

We all know the saying-you win some you lose some and that was no more evident then my day yesterday.

Let me start with the winnings of the day:

Parent magazine

BRAVO to you! You wrote a very informative article about type 1 diabetes. It is a good day when you can read something about diabetes and don't want to rip up the pages. Very well done Parent magazine this mother of a child who has type 1 diabetes thanks you!! People need to know that truth about diabetes.

Loser of the day:

Chelsea Handler and writers at the new show Are you there Chelsea?
We DVR our shows because 1. we hate commercial and 2. well mostly because, we HATE commercials.

side note: I was going to leave this alone diabetes jokes and all but as I lied in bed I became more and more aggregated. I just don't get it?

Last night was the night we decided to have a look at the new show Are you there Chelsea on NBC. I already was not really enjoying myself, it had it's OK smile moments but honestly I was not laughing my ass off at the t.v liked I had hoped.

I like Chelsea Handler and her sense of humor and I was willing to give this show the chance I thought it deserved UNTIL Chelsea and her writer's thought diabetes was an appropriate punch line to their discussing jokes. They opened up the laugh fest with the very original joke about eating cupcakes and getting diabetes...so clever! Oh but wait folks they did not stop there, right after that hilarious thigh slapper they continued with... but she's OK because they caught it early and she only lost 1 foot. ARE YOU FUCKING KIDDING ME!

Update: I flubbed the words after watching a clip from the episode they said that they caught it early and she still has both her feet.

First off dear Chelsea and writers unfortunately the diabetes jokes are getting old, they are way over done and quite frankly I think (hope) people are sick and tried of them. I thought you had more talent then that.

And secondly I really don't understand how diabetes is a funny topic and deemed OK to joke about. If ever someone said ya my best friend has breast cancer but it's OK they caught it early so she was able to keep both her breast...hahah her husband is happy...UMMM, ya not funny!! And EVERYONE would be offended not just people affected by breast cancer.

So what is it about diabetes that is just so DAMN FUNNY (a bit of a re-post)??

Is it watching people holding your child down as they scream out in pain, yelling at you to make them stop as nurses and doctors try to hook them up to life saving IV drips, taking constant blood sugar checks and blood draws because at any moment your child could seize or worse.
Would that be funny?

Is it the realization that life as you knew it is done and a new way of living will have to be mastered in ordered for your child to thrive and grow? Would that be funny to you?

Maybe it's the constant worrying, the constant stress knowing that this is all up to you to keep your child alive, the minute by minute second guessing, are you doing this right? did you count the carbohydrates right? have you administered the perfect amount of insulin dose?
Well does that seem funny to you?

Or maybe when you see your child lying lifeless on the floor and can't get up due to a low blood sugar, would that cause a smile to cross your face?

Would it make you happy to know the damage that is occurring due to high blood sugar in your child's body on a daily bases?

Would you find it funny if the medicine that kept your child alive could in an instant cause their death? No, I guess that is not too funny either.

Is it the fact that at night I can't even enjoy watching a movie without the ever growing thoughts to go check my child to ensure she is still breathing? The fact that all you want for your child is to be safe and healthy and no matter how hard you try you can't promise them that. The fact that in order for your child to live you have to cause them pain multiple times on a daily basis, tear are shed, sadness is shared. Is it funny that my child has been in the hospital more times then I can count. Please answer me...is that funny to you?

Would it be funny to you that a single cold or illness could send your child to the ER?

NO... then what is just so funny? Is it the thought of losing a limb due to your disease because that seems to be a really funny joke people like to share. What is it about diabetes that people just don't seem to understand the seriousness, the destruction that this disease can and does bring?

Is it funny that my child has to bleed 10-12 times a day, is it a joke that her fingers are rough and full of holes. Well maybe it was the 5 shots of life saving insulin that my child got or the now site changes every 3 days that she need to change her insulin in her insulin pump. Or maybe the thought of heart attacks, blindness, stoke, seizures, nerve and kidney damage, and even death...well those are not so funny, I guess?

Maybe it's just the pure fact that my daughter and so many other people and children get to walk this earth with their disease as a constant punch line breading more misconceptions and confusion causing people to believe that she or I cause this, or reinforcing the very wrong belief that she deserves this disease. Maybe you don't understand but because of your "JOKES" people believe its my daughters fault that she developed type 1 diabetes which by the way is completely false. Type 1 diabetes is an autoimmune disease but you don't care about that because that's not very funny is it? People don't see the need to help find a cure when they think all my daughter needs to do is get up off her ass and walk around the block to find the cure. People don't see the need in implementing supports in schools for kids with diabetes because it's not a "BIG DEAL" it's just a joke after all...RIGHT?!?!

Is it funny that she will be judged and may feel ashamed for the rest of her life because of your joking? I personally don't find that funny at all!

Can someone please tell me what the hell is just so funny about diabetes that this disease is not taken seriously at all. Misconceptions are shared within jokes, misinformed people are featured on popular t.v. talk shows spreading this crap to the masses. Magazines publish lies and people make money off of spreading false hope and lies.

Does the hurt and sadness and loneliness people feel when dealing with this disease make you smile?

I'm confused....I think I missed the punch line. Can someone please explain it to me.

Chelsea are you there?

What Is Super-Cool About You?

2012-01-12T09:28:00.000-05:00

Cara came home today with this wonderful page to fill out.

This huge paper was filled with questions like how old are you? where do you live? grade? teacher? members of family?

I was just waiting to see if type 1 diabetes came up at all?

When I grow up I would like to be a?
Her answer: A Princess Nurse.
She could not decide if she wanted to be a princess or a nurse so we just combined them...why not right?

BTW without diabetes being a nurse would not even be on her radar. Only because of D has she learned how amazing and fabulous nurses are. She absolutely loves "A" her nurse at school and of course she loves all her nurses at our D clinic.

I am a star because? (which Cara immediately turned into I am a rock star because?)
Her answer: I love to sing Chipmunk songs. Which is soooo true, she rocks the Chipmunk songs on Youtube. ( I will have to take a video and post it one day :)

However if I was the one answering for Cara I would defiantly say: she ROCKS type 1 diabetes, with all the pokes, the highs and the lows, she is a D rock star.

Now when we came to the question "write three super-cool facts about yourself here" I thought for sure, this one is all type 1 diabetes.

However, Cara had different ideas of what made her super-cool.

"I run fast" and she does. She just flies and we love that about her. She is always racing through the house, playing outside usually consists of many little running races. Whatever she does she is always done everything before any of her siblings. She is just FAST. I can't wait to see her race around that track one day soon.

"I can dance" and boy does that girl love to dance especially while singing her favorite Chipmunk or Selena Gomez songs.

The third fact took a little time, it took a lot of thinking. Hmmmm what else? she said looking at me.
Really?? REALLY??

I didn't want to interfere with her thinking process, I wanted to see where D stood. Would it even make the list?

I asked her what else makes you super-cool, what else makes you special? As I tried to keep the opinionated older siblings (Connor and Kylie) from saying the words you have type 1 diabetes, she finally said "Ummmmm, I know! I'm diabetes"

Yep and there is was, in a good way of course, the way I want her to look at having type 1 diabetes. For her at this age diabetes is not so negative. Yes, there is shots and pokes and pumps and site change but the positive defiantly out ways the negative for Cara right now...or at least we work very, very hard to make it seem that way.

This page really showed me the difference in thinking about diabetes between Cara and myself. To Cara T1D is an afterthought in here world right now. Of course, when she feels low or when it is time for site change it makes its way to the top of her list. But in her everyday life there is so many other things that makes her, her and so many things that are soooo much more important to her that she hardly has time to give D a thought.

Me on the other hand could have made every single answer on that question page about type 1 diabetes. No matter what I'm doing, what time of day, if Cara is with me or not (it is usually worse if Cara is not with me) it is there on the very TIPPY TOP of my list...constantly and always until a cure is found.

Personally, I love the way Cara looks at diabetes and I hope that does not change for a very long time!!

We Hit Oil...Wait, That's Not Oil!

2012-01-10T18:47:00.000-05:00

We had our very first gusher during site change last night.

What is a gusher? Well, the online dictionary would define it as

gush·er/ˈgəSHər/

Noun:

An oil well from which oil flows profusely without being pumped.
A thing from which a liquid flows profusely.

I would define it as one great big mess.

Recently site changes have been a wonderful experience, well not wonderful but 1000 X's better now that we have made the switch to the Mio sets. Cara is comfortable, she in not freaked out at all and there is very little crying and NO more screaming. Site changes are so MUCH easier and less stressful. I'm just hoping what happened last night does not change that.

Last night we hit "oil" ok not oil but we did have a gusher. All I have to say is thank goodness other PWDs have shared their gusher experiences or I would have been totally freaking out right along side of Cara.

I was sitting on the couch and the second I pulled the site a great big drop of blood began to get bigger and bigger and bigger. As soon as I saw it I said to my husband "I think we have a gusher go get a paper towel". He slowly got up from his side of the couch and I began to yell "HELLO...I NEED SOMETHING NOW" My husband really had NO idea what a gusher was and why I was in such a hurry. As he quickly (slow as hell) ran for a paper towel the blood began to run down Cara's bum onto the back of her pants. I could not believe that amount of blood and the speed at which it was spilling out of the little area that once Cara's site was.

Once I had the paper towel in hand I folded it up 3 X's the blood just soaked it's way through it so quickly I really began to panic. Poor Cara had no idea why she was bleeding as many of your know blood is not usually a part of site change. As she became more anxious I told her it will only stop bleeding if you settle down. If your heart is beating fast your blood will pump more and more blood will come out. As she placed her hand on her heart she looked at me and said "I really hate diabetes".

The bleeding did stop, we placed a band-aid on the spot and she cuddled with her dad for about 30 minutes until she was ready to go to bed.

Almost 3 years living with diabetes and we are still running into new adventures...Boy-O-Boy when will the fun stop ;)

The aftermath of the gusher.

Our 2011 Christmas Morning

2012-01-10T10:17:00.002-05:00

If you know me you know Christmas and I do not really get along all that well.

All the work, the excitement, the anxiety puts a lot of stress on a mother especially if Christmas morning does not go as well as you planned.

One year when Kailyn was 3 the Christmas tree and all Christmas decorations were down by Christmas day night. Lets just say Christmas morning did not go so well!!

This year I think I had the BEST Christmas morning EVER and this is one of the reasons WHY

It was a blast to see the kids so excited about their gifts that Santa brought.

Kailyn did us a huge favor this year and bought all her Christmas gifts online. Although there are a tons to returns it took the stress and work off of me to "FIND" what she was asking for. It was wonderful because as you read earlier even as a 3 year old Kailyn has always been extremely hard to buy for.

We did not go over board on what we call "filler" gifts we just bought a few things that they REALLY wanted and a few things that they really NEEDED.

Everyone was happy which in turn made me happy! Hope you all have a wonderful Christmas.

Happy Holidays and a Santa Dance

2011-12-24T10:38:00.000-05:00

Merry Christmas and Happy Holidays to my blogging family.

May this Holiday Season bring you LOVE, LAUGHTER, WONDERFUL MEMORIES

and most of all MERRY BLOOD SUGAR NUMBERS.

I am very happy to say that we have started wrapping gifts last night and I'm almost done my shopping :) YES, this is a GOOD thing and a huge improvement from past years.

and now time to party! Enjoy a little Santa dance

Gingerbread House

2011-12-22T17:32:00.001-05:00

Winner, Winner Chicken...UMMMMM...

Winner, Winner Gingerbread House?

I guess it does not have the same "ring" does it?

Today was P.J. day for the last day of school before Christmas vacation at the kid's school and Cara won this :)

One very exciting little girl

Now for carb counting...

A1C Update On A Tight Rope

2011-12-20T13:48:00.001-05:00

I know, I know, I promised to be happy if Cara's A1C was under 10 BUT really...REALLY... 9.9 ARE YOU KIDDING ME?!?! (go ahead you can laugh, it is kinda funny I guess...9.9) How does that even happen. I guess I can be happy we are finally out of the 10's. ha...ha...ha (that is me laughing at my 9.9 ha)

The A1c was from a finger pick so I'm taking off a few points because I feel that a blood draw A1c is much more accurate. So lets say 9.5 :) That's a little better.

Whatever the number this is not GOOD enough...UGH!

So back to the drawing board and time to change it up a bit. I need to change my mind set. I will admit I have a fear and it is of LOWS.

This is a hard job, too much insulin and your crashing and chasing lows, too little insulin and your child has high blood sugar and high A1c's, each has its own negative and crappy side affects.

This is not as easy as it seems. "Oh (they say) just count the carbs and bolus for them"...easy peasy right?.. "it's just a balancing act between carbs, insulin and exercise" (this is what they told me) REALLY? IS THAT IT? WHATEVER! How am I suppose to accurately balance something I can't see? How in the hell are you ALL doing this?

Imagine walking on a tight rope 25 feet in the air or better yet imagine placing your child on that tight rope and trying to help them navigate the tight rope...with your eyes closed...NOT FUN and GOOD LUCK because you or your child are going to fall. It takes time, it takes knowledge, it takes patience AND maybe a little luck. But you MUST walk this tight rope, as you make your way back up on that rope your getting stronger, your getting smarter, your confidence is growing. Just then, some jack ass thought it would be FUN to manipulated your rope and everything has changed. Now your rope is longer, it is thinner and it is angled!! You will need to make adjustments, you will need to make last second decisions but as long as you don't give up one day you will get there.

One day I will get there...One day! So new plan, we plan to be a little more aggressive, not too sure at this moment what that means or what that will bring but I must get this A1c down. We are also going to start saving for a CGM. Image walking this tight rope with your eyes wide open now you can see when the twist and turns from that jack ass are coming. That is what a CGM (continuous glucose monitor) will do for us and Cara it will open our eyes to what is happening with her blood sugars as it happens. I truly believe this is how we make a huge change in Cara's A1C, this is the way I can get over my fear of lows and feel more confident being more aggressive.

Do you think Cara would be sad if Santa brought her a CGM as her one and only gift? (that damn thing is expensive) Ya, I don't think she would like that too much!!

A1C Time

2011-12-20T09:58:00.001-05:00

Once again it is A1C time and I'm freaking the hell out.

As you may remember I did a VLOG of our last A1C results. We have been sitting in the 10s FOREVER as in for about 1 year. This is one of the main reasons we fought so hard to get Cara on a pump, better technology = better control and better A1C...right...I sure hope!!

The last A1C was our first A1C after only 1 month of pumping and I was SURE that we were going to see a difference in Cara's numbers...I was so sure I decided to video tape my excitement when the doctors told us we were finally out of the 10s. This of course did not happen and I cried...scratch that I SOBBED. It was a blow to say the least...

My brain tells me as well as all my wonderful DOC friends that an A1C is only a number that will give us information about what we need to do next for Cara. But my heart tells my that this darn A1C is a measure of how GOOD you are as a T1 mom.

And this T1 mom is SICK of getting my A1C ass kick by T1D.

So today I will wait by my phone, fingers crossed with a butterfly floating stomach waiting for my husband to call and fill me in with what the Endo said.

UGH I hate this...

MIO Wins

2011-12-18T21:24:00.000-05:00

For those of you who have read THIS post I just wanted to update.

The Mio sets have won.

Pink has won over white
A soft 90 degree cannula has won over steal
and an insertion devise has won over manual inserting the set

Site change day is just so much easier it is so worth the extra money (I hope). Less fighting, less yelling, less crying and a much happier Cara which means a less stressed me...which is good for everyone.

A Breakdown Kinda Day

2011-12-14T21:06:00.003-05:00

(this post was written a few days ago)

Today was a different kinda day in our house.

Diabetes got the best of our emotions today.

As I was cleaning today I found one rocket candy, a poker that we don't use at all and 2 Tegaderm strips on my dresser among other things I will not mention on this blog :). I collected it, and a smirky-smile appeared on my face thinking about Cara and then it HIT.

All of a sudden my eyes fulled with tears and an abundance of negative thoughts entered my head before long tears where rolling down my face as I placed the diabetes paraphernalia in their drawer.

This is not normal echoed loudly in my head:

People with children don't normally have candy stashed around the house as a life saving medicine.
People with children don't normally cause their children to bleed to ensure their child's health.
People with children don't normally stick life-saving computerized organs to their children.

I found myself lost in the negativity that diabetes CAN bring to her future.
I found myself focusing on the pain that diabetes DOES bring into our lifes.
I found myself absorbing the negative reality that diabetes is...AND I had enough!!

You can not live in that mind set, that is not living, that is NOT healthy.

Once and awhile I may visit that dark small corner of my mind but not anytime soon.

Cara has way more to offer then the small negative space that diabetes takes from her and I choose to focus on the amazement that my children and diabetes bring to me today.

I went along with my day as I usually do.

After school and dinner Cara came to me like she always does and asked "is it site change day"? Knowing all the while that it was. "Yes" I said to her, "what site do you want to use today? The pink Mio"? "NO"!! Cara shook her head. "OK, so the sure T then"? "NO"!! Cara said this time with a very sad tone. As tears filled her eyes she looked right at me and said " I don't want to be diabetes anymore...it hurts" and with that I realized that I was not the only one lost in negativity today.

I told her I know but today is site change day and we NEED to pick one site, have a bath and then do a site change. I gave her a hug and as she placed her head in my shoulder she whispered OK the Mio ones, there pink.

Some days are hard and some days we need to cry and we need to say NO or I DON'T WANT TO DO THIS ANYMORE as long as we don't let it eat us up inside because WE ARE SOME MUCH MORE THEN DIABETES. I will never let diabetes take mine, my families or Cara's happiness away.

Not To Sure About the Sure-T Anymore MIO

2011-12-13T20:56:00.002-05:00

We have been using the Medtronic Sure-T's sets since we started pumping. There were two main reasons for that:

1. Our D team thought that the fine steal needle would be better for Cara because she is very thin and muscular therefore decreasing our chances of kinking what is a cannula on other sets.

And

2. We all thought that Cara would find the other sets with insertion devises too scary looking and therefore fight us more during site change then with the basic look of the Sure-T.

We have loved our experience with the sure-T's. Cara still fights us to the death at site change time but other then that we have had no real issues. However I have started to notices that Cara is often complaining about her site bothering her. I sometimes get phone calls from the school telling me that Cara says her site is hurting. I nicely tell them to get her back to class and tell her she is fine. I never was sure if the site was really causing the pain or if Cara just wanted to take a nice stroll to the office.

Last Sunday we found ourselves in a bit of a predicament, we were out of sites...out of sure-T sites that is. We had 2 brand new Mio site that our Medtronic rep had given to us when we started pumping.

Hmmmm...we thought about it for a few seconds, should we give it a try??

YEP!! I jumped on YouTube and watched a young man insert a Mio site. (I'm sure my D clinic will be very happy to hear that!!)

Cara was very excited about the whole pink set, she does have a LOVE for that colour. As I got everything ready I started to panic. I did not want this to hurt more then the Sure-T's, I was not 100% on what I was really doing and once out of her bath the novelty of the colour pink was starting to wear off and the anxiety of the sound of the insertion device was becoming more of a concern for Cara.

My husband held her down (hugged her tightly) as I bribed her with a trip to the dollar store if she would stop screaming and would hold still, that of course did not work! Time was ticking away, with me not feeling sure of what the hell I was doing and Cara waving her whole body up and down I starting to freak the F out. At one point my husband asked if I wanted him to push the button to dislodge the devise. "NO, I can do this. Just hold her still" As I disinfected the area, found "the spot" and closed my eyes (YES I CLOSED MY EYES) I pressed the sides of the insertion devise and POP the Mio was in. Thank GOD!! I thought I was going to break down and cry.

Once everything was said and done Cara was over it and she said that it only hurt for a second. Of course she couldn't wait to show her nurse her new PINK site at school tomorrow. I asked her if it felt better then the sure T's and she said YES, I was shocked about that. And guess what, it has been two days and I have not had a call from the school saying Cara's site is bothering her.

So here is the big question do we switch?
and here is the big answer...I don't know?

It has only been two days on the Mio and I will have to see how the second site change goes before I'm completely convinced that she likes that Mio better then the sure T's.

Another issue is the cost. On the Medtronic of Canada website

A box of 10 Mio's is $215.00

A box of 10 Sure T's is $168.00

We do site change every 3 days, which means for people that don't know a new site every 3 days (or sooner if there are any issues with the site)

So there is about a $500 difference a year...

Ummm at that price she better be the best behaved diabetic child EVER at site change. Next site change is Wednesday (tomorrow) we will see how that goes...

I personally really liked the Mio :)

This Santa and CFRD (Cystic Fibrosis Related Diabetes)

2011-12-12T00:32:00.000-05:00

My cousin Kurtis is funny...OK, OK the kid is hilarious and has started a YouTube channel that I have been wanting to share with everyone BUT he's a bit...how do you say...Edgy, crude (sometimes) and a bit... well, controversial. But when I saw this skit I thought it would be a great way to educate people on CFRD and CF since "Santa" brought up diabetes.

This Santa is my cousin Kurtis, this Santa has Cystic Fibrosis and this Santa knows about CFRD.

CFRD or Cystic Fibrosis related diabetes is diabetes that forms due to complications from Cystic Fibrosis.

The Origins of Christmas, how it all began.

(note to those with sensitive ears, there are a few BAD words)

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure as of right now for CF. CF is a multi-system disease, primarily affecting the lungs and digestive system. In the lungs, where the effects of the disease are most devastating, a build-up of thick mucus causes increasingly severe respiratory problems. It may be difficult to clear bacteria from the lungs, leading to cycles of infection and inflammation, which damage delicate lung tissue. Mucus and protein also build up in the digestive tract making it difficult to digest and absorb nutrients from food. Large quantities of digestive enzymes (average of 20 pills a day) must be consumed with every meal and snack. As improved therapies have helped to address the malnutrition issues, virtually all cystic fibrosis-related deaths are due to lung disease.
(information taken from Cystic Fibrosis Canada)

CFRD is extremely common in people with CF especially as they get older. CFRD is found in 35 percent of adults aged 20 to 29 and 43 percent for those over 30 years old. Diabetes in people with cystic fibrosis combines the characteristics of both type 1 and type 2 diabetes. The build up of thick secretions in the pancreas eventually damages the hormone-producing cells, causing insulin deficiency due to scaring in the pancreas. In addition to insulin deficiency, people with cystic fibrosis often wind up with insulin resistance because of:

Chronic infections
High levels of cortisol, a hormone that the body secretes in response to stress
Frequent exposure to corticosteroids which are anti-inflammatory drugs sometimes used in the treatment of lung conditions that mimic the action of cortisol.

The symptoms of CFRD are the same as the symptoms for any type of diabetes:

Excessive thirst
Frequent urination
Excessive fatigue
Unexplained weight loss

The problem is that all of these symptoms mostly occur in people with cystic fibrosis, whether or not they have CFRD. This makes early detection difficult.

CFRD is usually treated with insulin.

I clearly remember when Kurtis was born and I clearly remember when he was diagnosed with CF. I will never forget the sadness and devastation that followed and I never want to forget the love, the hope and the belief that one day we will find a cure for Cystic Fibrosis.

Cystic Fibrosis Foundation
Great Strides

A Few Bullet Points Made This Week

2011-12-09T13:31:00.001-05:00

Once again we found a way in postponing Connor Ryan's blood work for TrialNet (he's not complaining). If you don't remember he has tested positive for 1 antibody during his TrialNet screening so they asked for a re-test to confirm. For some reason it is taking us forever to get him there...UGH soon, I promise!!

AND

Once again I reaffirmed a trend in Cara's diabetes. Diabetes and tap dance makes for a low Cara during the middle of the night. However for some reason I keep on forgetting all about this trend that I rediscover week in and week out. Every Thursday night at my 2:30am check I seem surprised with the fact Cara is low, with a "FUD" and an eye roll I run and grab sugar. What is the good in realizing these things if your not going to use the information.

Note to self for next Thursday: REMEMBER to add a few extra carbs during bedtime snack and Cara will be all set. Maybe I should tie a ribbon around my pinkie?

BTW

I totally think I just made up a new diabetes term FUD...F U Diabetes :) LOVE IT and it makes you feel soooo good saying it. Everybody now FFFFUUUUDDD!

Oh ya,

Just to make this week even better my 3 year old potty trained Cody has peed on my floor twice this week (YES my dear Laura, you are not alone). The first time he was wearing roller blades (yes, my children like to roller blade in my house) which limits his speed tremendously. He is very cautious and slow on these things and he was just unable to make it. However the second time I have NO IDEA what that kid was thinking because he was on the computer playing games one minute and peeing in his pants and on MY FLOOR the next. Why bother to pee in a toilet when you can finish your Buzz and Woody game while peeing on the floor??

On the topic of Woody...could you NOT have found a better name for a child's toy "Cody where's your Woody?" "Cody grab your Woody" "Oh Cody, you love your Woody" " Cara can you grab Cody's Woody" Ya great job Toy Story!!

OK back to diabetes:

I have "met" 2 wonderful and local families with children who were newly diagnosed this week. One family has a little girl the same age as Cara and I'm sure we will met up for a play date soon. Cara loves seeing all her computer t1 buddies, she knows everyone by name and we talk about them all the time but I would love for her to have a friend that she can play with IRL with diabetes. Both of these families were in my thoughts a lot this week.

Lastly something new:

I got a phone call from the school the other day telling me that they saw blood in Cara's tubing. Well, they said line but meant tubing. I was thrown a bit for the first 2 minutes of the conversation something about Cara and blood in the line, I had no idea what was going on. But I finally realized "the line" was her pump tubing. This was the first time this has happened to us. Of course I relied on my facebook peeps to give me some insight on ideas of dealing with this. By the time she got home however the blood was gone and her blood sugar was in range with no issues soooo I respectfully ignored my amazing facebook peeps advice (love you all) to pull the site. I kept a very close eye on it for the rest of the night and we had no more problems and no more blood.??? I have no clue??

Which also reminds me we need to order some more sure T site.

Hope you all have a wonderful weekend.

Food With Personality

2011-12-08T08:55:00.001-05:00

I know as a person that is affected by diabetes we look at food differently then others but this is ridiculous...

Chocolate Swirl Cheesecake or Sammy (as I liked to call him) and he was D.E.L.I.C.I.O.U.S

Who Needs A Therapist When You Have A Blog? How This Mom Of A Type 1 Deals With The #3.

2011-12-06T13:26:00.001-05:00

Today I realized that I'm doing it again.

I basically shut down and run on auto Pilate, just doing enough to get everyone where they need to be at the times they need to be there, just enough to run a house and take care of the kids, just enough to care for D.

This is not intentional, it's an automatic response on my part. A defense mechanism perhaps that I have developed through out the years. When times get rough or emotional, when I'm trying to work my head around a situation or event or crisis and I need a little more time to figure things out I being to shut down.

Sometimes, most times I have no idea what it is that I'm trying to deal with (like this time) but I know there is something that is REALLY bugging me.

I usually fill my day with time consuming activities say for example... facebook. I have an overwhelming feeling to go on facebook to do something about nothing because it fills my time. Or I will NEED to have a nap. Now if the shutting down process is nearing the end, naps and sleep become impossible (like last night). My brain will swirl with issues, what if's, what to do's and the list goes on and on not even touching or dealing with the REAL issue that I have hidden away until I FINALLY fall asleep.

I noticed that I don't like to clean when in shut down mode. Cleaning leads to "head talking", head talking leads to brain swirl which leads to extreme stress and in the end again not dealing with the hidden real issue.

It's all about filling my time and head with mindless crap until the epiphany, like a shinning warm light and then tears and then dealing!

On a side note but very important note when blogging: Another thing I noticed is that I CAN NOT SPELL during this shutting down processing period. Almost like there is just too much going on in my head and I'm just unable to give the attention and focus that this dyslexic MUST put into spelling.

Are you enjoying your little trip through the workings of Nicole...not sure if I'm boring you with this but as you will see in just a short read you will help me with the real issue!

I have noticed I'm having a really hard time thinking of posts to write, I'm loving facebook a little too much lately and my house needs a good cleaning which makes me think, that I dealing with something and today right before I started to blog I realized I'm smack dab in the middle of a shut down!

So what is my problem?? I have not a clue?

I think that it is diabetes related...BIG shocker right?

Recently I have been very anxious (more then usual) when Cara is not around me, it is all I can think of. I wonder what she is doing? I wonder what her blood sugar is? I wonder, I wonder, I wonder...UGH!! Until she walks in that door Cara and diabetes is all that I want to think about.

If I'm trying to watch t.v. at night and spend a little "my time" all I can think of is "I should go check Cara's blood sugar" (head talking) the whole time. I don't, because I don't need to, I just checked it 30 minutes ago but it is an internal fight EVERY NIGHT.

I'm obsessed with getting that number when she is not in my sight. A control issue or something more? Whatever the hell it is I need to deal with it and fast. I'm driving myself crazy!!

I know this shut down is coming to a head because this obsession is getting really bad right now. So now I'm thinking it is a way I'm trying to keep my brain busy. Maybe it is a symptom of the bigger problem.

But what is the root of my problem?

Maybe December?

December is really not a good month for me, it brings me back to how sick Cara was in December before she was diagnosed, it brings me a lot of guilt not being able to see the disease in December, it took me 2 more whole months before I said enough is enough, THERE IS SOMETHING REALLY WRONG WITH MY KID!! and that really hurts.

It's a huge disappointment to me, it is a great big fail in my parenting book. I'm her mother how could I have not seen this. I mean, we knew that something was wrong, she went to the doctors a few times but we and the doctors just wrote it off as a flu. BUT I'm her mother!! and I should have known (I know, I know but this is something that I'm working through and I will be for a very long time until I let it go). So I know that this is one of my issues.

Another thing that I think is causing my state is February is right around the corner (ya, OK, I have issues with months) For anyone who has been reading this blog knows that February is our diagnoses month.

However this date has not caused THIS before?

This February 13th marks 3 year of living with this disease and in there lies a number that I'm having a huge issue with. 3 years is not just any number for me, 3 years is not just any number for a 6 year old...3 years is half of Cara life. On February 13th Cara will be living with diabetes for half of her amazing little life and this hurts my heart more then I can deal with right now. I know this because I'm in tears as I type.

I'm seeing this as a turning point in Cara's life. Her life before diabetes is getting farther way, it is almost a forgotten memory. My little Cara before diabetes is disappearing right in front of my eyes and I'm having a very hard time letting her go.

Is it funny/weird/unsettling that I think of Cara as 2 different people?

The Cara before t1 and the Cara after t1.

I love them both the same and I now realize that I'm grieving the loss of Cara before type 1 diabetes. I'm loosing her, every year that passes, she gets farther and farther away. One day I fear the memory of her will be gone forever.

and I think we have cracked the nut.

Well, my hour is up and I think I just had a huge break through....Thank you! Who needs a therapist when you have the DOC?

Conclusion: I'm grieving the loss of my Cara before type 1 and I NEVER want to grieve the loss of my Cara after t1 unless it means there is a cured Cara.

Your cheque is in the mail!! :)

BTW this was a very hard post to hit publish on...UGH I hate posts like this!!

Looking For Cara's Data

2011-12-05T09:25:00.001-05:00

One night my husband and I were sitting on the couch, kinda watching t.v. but mostly brainstorming about the changes that we needed to make to Cara's insulin.

That is the one thing about being a parent of a child with type 1 diabetes, there NEVER really is a time you are not running bg numbers through your mind, evaluating the day, count/adding/dividing/calculating carbs and insulin ratios, thinking about supplies needed (which reminds me we need more sites and insulin) or preparing for the day ahead. Your time is no longer "your time" it is now shared and many times over taken with type 1 diabetes.

We both were throwing a few ideas back and forth without any numbers in front of us and without the real information that you need to look at and study to make this important change and it was getting very frustrating.

I had just downloaded Cara's pump on our Medtronic Carelink program so I said to my husband in my frustration "can you just go get my computer and look up Cara's data? I really need help"

He paused and looked at me with this wicked smirk on his face "is there something you need to tell me?" he said. I just started laughing because it totally sounded like I said "can you just go get my computer and look up Cara's Dada? I really need help"

There are moments of funny with D, thank God!!

Where's Cara?

2011-12-03T19:52:00.001-05:00

On Friday Cara came running threw the door yelling for me "mommy, mommy" she said

Panic was my first reaction (as usual when Cara is not right by my side) but by the tone and excitement in her voice I soon calmed myself down and was all smiles waiting to see what she was so happy about.

and the following conversation went as followed:

Cara: "mommy I got my class picture" (she had the biggest smile on her face as she pulled out the picture to show me)

Me: "You did, let me see"

Cara: "OK...Oh ya, but I'm not in it"

Me: "What?"

Cara: "I'm not in it!!!"

Me: "Why not?"

Cara: "Because I was taking my blood sugar"

Now before you get all mother bear at the school like I was about to (trust me mama bear was about to explode when I heard the first part of this conversation) you must hear the whole story.

It seems that someone finally realized that Cara was not in the first picture (kinda weird but whatever) and asked the photographer to take another picture of the class with Cara in it. He did, and the teacher made it a point to tell him that they needed to have the second picture printed, the one with the WHOLE class in it.

Well I guess he forgot and the whole class received the picture without Cara.

Cara reassured me not to worry, her teacher was going to take care of it.

The teacher reassured me not to worry the secretary has made a call to the company she wrote in Cara's agenda.

So I'm not worried... just hopeful that D does not take the simplest of pleasures and memories away from Cara's grade 1 experience.

Cara's 6th Birthday, Happy Thanksgiving and A Retest

2011-11-24T08:39:00.001-05:00

We got the phone call ... the one that I really thought would came but not for the kid they called about. My bet was on Cody (is that weird?) but it was Connor who tested positive for 1 autoanitbody at our TrialNet screening.

Autoantibodies are proteins made by the immune system. Autoantibodies are a sign that your immune system may be attacking the insulin- producing cells in your pancreas. Having these autoantibodies places you at greater risk for developing diabetes.

To do this screening test, a small sample of blood is drawn from your arm at a TrialNet clinic or you can ask us to send you a test kit that you can take to a local lab or your own doctor to have your blood drawn. Then the blood sample is sent to the TrialNet central laboratory for analysis. Taken from TrialNet website

So what is our next step?

We need to confirm the positive, so Connor needs to do the blood draw again. I have the test kit sitting in my kitchen, just waiting. We are waiting for this flu to clear the house before we retest. Today is Connor's first day back to school in a week, he started with a really bad cough and then the flu hit the house.

So next Monday we are planning on taking him to the lab. I have not told him what it was for, I told him we just want to make sure his cold/flu is gone and that he is feeling better. I don't feel like I need to worry this kid because OMGosh this kid worries about EVERYTHING...and this would make him go crazy!!

ALSO TODAY IS A VERY SPECIAL DAY...

TODAY IS CARA' 6TH BIRTHDAY

and she will celebrate it just like every other kid, cupcakes for her class during afternoon snack, presents and a birthday cake tonight. She is so excited, she has even more skip in her step today, she HAD to wear a dress to school and paired it with a beautiful little necklace...very cute!!

Happy birthday to my sweet Cara, I hope her day is as special as she is :)

and of course a shout out to all my American Family & Friends,

Happy Thanksgiving Everyone.

I'm so THANKFUL to have you all in our lives.

L.O.W.S and a thought on the artificial pancreas

2011-11-19T13:24:00.001-05:00

I have no idea what has happened...

Everything was beautiful....

After a whole day of fighting lows, extreme lows one after the next, I gave up and called the clinic.

We made changes...

A lot of changes, I don't think we left one thing the same...

OK, maybe one little basal rate...

My husband and I fought over the changes...

"Great now she is going to be sky high all weekend" he said.

"Dr. M is going to be pissed that we are changing all of this" he said.

I told him I don't care, I have no idea what the hell is going on with her blood sugar, I'm sick and tired of chasing these lows and I'm making the changes. If she is running extremely high we can change it back.

He was mad, he just spent countless appointments getting us to this point. He spent countless hours telling me that "it's O.K. Nic, we will get there, we will get her A1C down".

So I wrote down all of our old basal, bolus, sensitivity rates so if we needed to we could go back.

Because only a few days ago our numbers were beautiful. I mean amazingly beautiful for 3 days...

Before all this...

So I made the changes.

So I was up 5 times in the middle of the night, 3 of which force feeding food to a sleeping little girl who wanted nothing to do with it.

Finally by 6am a 13mmols. Amazing to see after a whole day and night with numbers under 5mmols.

Then an 17mmols at breakfast and a look from the hubys... the "I told you so" look...WHATEVER!!

But wait, a 14.8mmols then a 6.4mmols and then...

A 2.9mmols...

54 carbs later and now we wait to see what way diabetes wants to go with this.

I'm just lost and tried and frustrated and sad. I hate having to call the clinic, I hate catching lows, extreme lows that Cara is not even feeling, I hate second guessing what I think I know...

I HATE DIABETES

This experience does shine some light on something...

The artificial pancreas, amazing technology, life saving techology BUT if you can't afford it WHAT GOOD IS IT?

Do you want your hard earn fundraising donated money going to a technology you can't touch?

Case in point, we have the amazing Veo, ya the one with low suspend, the one that can predict and stop lows before they happen.

So why all the lows, why the whole day and night of lows?

We don't have health coverage. All of Cara's costs comes out of our pocket. Everything except our amazing Veo pump which is covered by our provincial health coverage. However CGM's are not covered within this program.

So no CGM right now and the Veo means we still have lows.

What good is the amazing talents of the Veo if you can afford the most important part...

The CGM!!

I'm just wonder how affordable this amazing technology the artificial pancreas will be?

Will Cara still be at risk of being one of the 1 in 20 even with the artificial pancreas available to the public...

Just something I have been thinking about.

TrialNet Results Are In

2011-11-17T12:44:00.001-05:00

They are here the results to our TrialNet screening. I was soooo happy when I saw so much mail in my mail box but as I counted I noticed something

1...2...3...4...5...6...

Wait just a minute

Mine, My husbands, Kailyn's Kirstin's, Kylie's, Cody's and....where the hell is Connor's?

We are now officially waiting for Connor's. I have not yet gotten a phone call with a positive result and his letter with the negative results could still be in the mail...so we are waiting...UGH!!

I have been anxiously waiting for these results since September 15th when we all took the trip to get screened for autoanitbodies. HERE'S A LINK to a video of our trip

So what is in our letters you ask "The result of BLANK's screening test was negative. This means that no diabetes related autoantibodies are present at this time. This is not a guarantee that BLANK will never develop diabetes. It does mean that BLANK is currently at a lower risk than if the test was positive."

When you test positive for autoanitbodies they tell you to expect a phone call.

AND of course I know just because someone test positive for the autoanitbodies it does not mean that they will for sure develop type 1 diabetes. And I know that just because someone test negative for the autoanitbodies it does not mean that they will never, ever develop type 1 diabetes.

I know this but a negative test allows for a little breathing room.

I just hope that Connor's results are in the mail box tomorrow... fingers crossed!!