Dexcom G4 Platinum has landed at our house!

Katie has a new tool which is going to be super helpful in managing her diabetes!  These little devices are NOT cheap.  Our insurance discounted it down to $1600 roughly and $300 a month for supplies.  After we meet our deductible it will be covered 100% though (that is what we are waiting for!)

A continuous glucose monitor (Or CGM) is what Katie is now wearing.  It inserts via a catheter-type needle and stays on her body for 7 days.  Before we got this CGM we were testing her blood via a traditional glucose monitor about 12 times a day or more.  I don't think people realize- but diabetics must test their blood before every meal and bedtime.  In addition to this, because Katie drives she has to test it before she gets in the car also.  Then she needs to test when her numbers seem low or high.  We go through strips (at a $1 a strip) like they are water.  A CGM will enable us to only have to calibrate it every 12 hours and then test the normal 4 times a day.  It's important to note that this will show us trends...but that the device is giving us blood sugar levels from her interstitial tissue- NOT her actual blood.  So it has about a 15-20 min delay.  But it can tell us when she's rapidly increasing, decreasing or hitting lows.  She can then test with a traditional meter and compare levels.

The important thing for Katie is that this device will beep at her incessantly when she's sleeping until she wakes up when she's low or high and deals with it.  This is key for someone who does not recognize her low blood sugar.  She's had a few episodes at work before this CGM where she didn't recognize she was getting low and thank goodness her fellow employees did and got her to sit down and get some carbs into her system.

This device allows her to live more normally.  It checks her blood levels for her every five minutes.
I will say that the set up is clunky.  I can only imagine it will be smaller and easier to insert with every new release.  She has to put this sensor on and it has a sticky pad that sticks to her stomach and then at first it's got this plastic tube on it.  That tube houses the needle.  She needs to push it into her stomach and the needle then stays in place.  The sensor is waterproof and she wears it for 7 days before she makes a change. The receiver itself is good for about a year before you have to replace it and is NOT waterproof but she can keep that nearby.  She currently wears it like a pager almost.  I hope future versions will eventually link it to a cell phone so you don't have to have that big pager thing with you.

When she gets a pump she will have two devices she will need to carry.  I'm so grateful that Humana approved this CGM.  I finally got a good night's sleep knowing that it would beep at us if she had a severe low.  We will post more information as we learn more.  Right now we are working on getting the software on my laptop and then the receiver will download data for us that we can see trends on.  She can enter carbs and insulin units also and the device will calculate what is going on and when.  So priceless..

This is a way for her to check her blood sugar and make corrections while on the go.  She can check when we exercise, she's out running errands, at work, etc.  Priceless!!!

Fundraising for Katie's Warriors!

My good friend Sandy sells South Hill Designs and Thirty-One bags.  We were so honored that she offered to do a party for us for Katie's Warriors and donated her commission to our JDRF (Juvenile Diabetes Research Foundation) Walk to Cure Diabetes (this coming October!)  Please click on the link to find our page- we are Katie's Warriors and we are walking at the Chicago Lakefront on 10/6/13.

Anyway there is still time to order these awesome necklaces and tote bags.  I'll include the links here.  100% of the commission from this party will be donated. 

Shop South Hill Designs at www.southhilldesigns.com/sandyburns. Please email sandyburns3@yahoo.com that you ordered under this fundraiser. 

Shop Thirty-One Gifts at http://www.mythirtyone.com/shop/catalog.aspx?eventId=E3447424&from=DIRECTLINK

AnnaGrace's Locket

These lockets are so cute and I love that we can personalize them for what we love.  Mine has a blessed coin and then birthstones for my gang plus a camera (for my love of photography) and an owl (for my biology interests).  I am waiting on my blue ribbon (for diabetes awareness) and my rainbow (private joke between my husband and myself  :)  AnnaGrace chose a horse, paint palette and guitar with Dream.  Katie chose a starbucks coffee cup (Barista - holla!) and a blue diabetes awareness ribbon with another charm.  

The mini locket holds only 1-2 charms..the one I posted here is the medium one.  The locket includes a chain.

The other product- Thirty One- are so nice.  The website and catalog does not do the products justice.  I love the lunch bag because it's thermal and keeps my foods cold for long days at class.  And the patterns are just too cute.  My other favorite bag is their every-wear wallet..it's big and has a strap you can pull out when you want to just take your cards and go and not have your whole purse!

We are closing out the party in a few days (by Saturday) so please order soon if you are planning on it.  We've already raised $191 for Katie's Warriors doing this party and we thank our family and friends for supporting us in this journey!  Thanks!

The Mom Card

On her way to the new job!

Sometimes you just have to play it.  You walk that fine line everyday to not butt in and to allow your child to make their mistakes.  It's like when they are learning to walk or ride a bike, right?  Well every now and then you have to step in.  This past week has seen really bad lows and really high highs.  I think it's the combination of the two jobs together.  Katie quit GameStop because of lack of hours.  She loved it there but 3 hours a week wasn't going to work.  So she got and loves her full time job at Starbucks.  BUT she insisted on doing the full two week notice and then they decided to schedule her 10 full hours each of her last two weeks at GS.  Which would have been fine if she was a normal 18 year old..but we all know she's extraordinary and not normal!  She had texted me earlier in the week that she was not feeling well and her blood sugar was in the 60's.  So I texted her to leave work.  She got a bit short with me and said she was fine.  I called her at work and she answered and was slurring her words.  So I texted a neighbor to drive me there and texted Katie that I would drive her home.

To say she was annoyed with me for showing up and standing outside her work was an understatement.  But she then thanked me because I said her sugar was way too low and she looked horrible.  We got her a burger and salad and went home.  She's spiking high and swinging low all week.  Then on Wednesday she texted me from the 2nd job- GameStop to say she *really* didn't feel well.  Her coworker convinced her to sit down and drink some soda..but she said she was really tired and just didn't feel good.  I didn't even hesitate.  Enough was enough.  It's stressful enough to be on the receiving end of these texts -can you imagine being her body going through it?  So I called the store and told them that she could NOT work her shift and this would be her last day.  I said I was sorry but she's endangering her health out of some misguided sense of obligation.
I was lucky in that my uncle (in from out of town) and my mom had decided to follow me back to my house.  (In another story- my 98 year old grandmother is staying here right now while her house is getting new windows and doors!)  Thank goodness they were in the area and could help me with the logistics.  By the time I got to the store she was weaving and looking super pale.  And was out of it.  In the 15 min it takes to get home, she actually started feeling a bit better.  My uncle took her, my mom took her car and I went to get her food and meds.

I'm telling you as a parent- sometimes you have to play this card.  Even with the older adults.  She does NOT recognize she's low at all.  Ever it seems.  Sometimes she will catch it but usually she has no idea.  She did this at Starbucks...who adore her and the staff recognized it before she did because she was holding her head.  They forced her to take a break and test her blood and lo and behold- low low low.  They told me that they would all carry my phone number and be trained on the glucagon so she's safe and she can take whatever breaks she needs.  They've been so supportive.  She literally was diagnosed on the day they hired her.

And that bike she learned to ride?  Didn't happen without training wheels until she was in middle school.  We tried to get her to ride without them.  Sometimes it just takes what it takes.

Doctor, Lawyer, Indian Chief

Do you remember this childhood rhyme?
      Rich Man, Poor Man,

Beggar Man, Thief,

Doctor, Lawyer, 

Indian Chief.

For some reason it came to mind when I was trying to think of a subject for this post.  :)  

This is what I feel like now...lawyer- or at least crafty when dealing with the insurance.  Doctor, nurse and everything else.  I've been reading other blogs and I realize this is NORMAL.  But it's tiring.  I feel like I'm on a tightrope because Katie is 18 and an adult and she's obviously wanting to be treated like an adult.  But is it wrong of me to want to make sure she has everything she needs?  She was going to a friend's house tonight and I tried about 20x to get her to agree to have the friend here.  She KNEW why I was doing it and pushed back equally as hard.  I had to literally bite my tongue when I asked her final plans and she said that he was picking her up here and bringing here to hang out at his place.  Now I'm sitting here trying NOT to obsessively text her over and over.  I'm trying guys.  I'm human though.

Case in point. Yesterday she was getting ready for work and I let her figure out what she needed. I believe I even asked as she was flying out the door if she had everything she needed.  Then she texted me she had NO snack with her.  You have to understand - she and I live by her meals.  She has to - literally.  Especially when working and doing physical activity - her numbers drop too low.  But I just told her to go to Target next door and get a snack.  And honestly- she figured it out.  Her best friend Mel was heading up there and was able to get her a snack.  I wasn't trying to be unfeeling but she has to learn.  I won't always be there for her and that kills me.  It's why I wish unrealistically that she had gotten diagnosed when she was little.  I feel like it's SO much harder to have a new adult be diagnosed.  As if she doesn't have enough to be responsible for???

So..I let her go today...I have texted her a few times and she is understanding more that I need to hear from her.  Need a text with her bs numbers.  And once in awhile..her lows are low and she gets freaked and asks to sleep with me and I gladly make room in the bed for her.....gladly....

This disease scares the heck out of me.  I think because I want to be in control all the time and it feels like we are falling down the rabbit hole.

I know more about carb counting and insulin amounts and things I never signed up for.  For those who know me- I was a creative person.  Trained originally years ago to be an elementary school teacher.  Went on to own a scrapbook store but when that store failed in the economy I did something so drastic my close friends and family (but not Kevin..he always knew or believed in me) thought I had lost it.  I went back to get a degree in Science.  I don't know if Kevin was rubbing off on me or what, but when he asked me what I wanted to do - that is what I said- BIOLOGY.  I believe we are on this path due to fate or whatever and this obviously was something I started studying for a reason a few years ago.  Little did I know it would be to help my daughter stay healthy and live a long life!  

I'm so glad I paid so close attention in all my courses..I know more about our cells and how they work from even before this disease....time to close down for the night...think it's about time to text my oldest.  I'm sure she will forgive me.  I always was a mama bear when someone was poking my kids..it's amazing to me how much like the mom in Steel Magnolias I can be when pushed....I'll do anything to make sure my daughter is ok.  Even if it means incurring her wrath for texting her numerous times in a night.  One day when she has a child she will get it!  

Carbs, carbs and more carbs

We have more numbers running through our head each day.  I don't know how Katie keeps it all straight.  I just don't.  But she has to count every single carb.  Every. Single. Carb.  She started with the Diabetes App ($7)

But then decided to change over to the MyFitnessPal because it tracks her exercise, water and everything and provides a more clear picture to what is going on with her body.  MyFitnessPal was free I want to say and it tracks all your food..plus you can scan the barcode to find out the exact carbs.  Still everyday is a process....you have to know how to estimate them..and when she is on a pump she will need to be able to do this correctly.

Why?  Well as far as I understand to date- the pump and even insulin shots- give a specific amount of insulin anticipating that you will be eating x amount of carbs at a meal.  This is difficult to estimate.  What happens if you inject a set amount (more difficult when you have an insulin pump) and then a) the food isn't delivered to your table quick enough or b) you've eaten only 1/2 the meal and calculated for more carbs?

I know a lot of people do the low carb diet, etc.  But your body truly needs 45g (55g if you are a male) at each meal.  Then another 15 g for snacks.  There are simple carbs and complex carbs. She can eat sugar..but her body can't process it without the insulin.

Diet or diabetic foods she needs to avoid since they put in more fat to make them palatable.  So she has to just eat less of the stuff she normally eats.  Save fast food and sweets for the once-in-awhile.  And as she does it- so do we.  The good part of keeping count and exercising is that I've lost 3 lbs!  LOL

She has to be as precise as possible.  Things we put in our mouths and don't think about will not work for her without counting carbs.  She can eat proteins and stuff without counting it but her numbers are not staying "stable".  I put that in quotes because stability as we know it is gone.  Illness, activity and a host of other things (sunburn, etc) can affect her blood sugars.  Chinese food sends her numbers through the roof (and not even fried food) and so did Pizza Hut pizza....My homemade pizza was fine.  So it will be a learning curve!

And so we wait

We got the official call that there is no way around their black and white policy.  They didn't care about the reasons why this is important now- we simply have to wait 6 months.  Which is fine.  She's upset but will survive..she's a fighter.  It's just hard to manage with how active she is, etc.  Now to wait and see about the Dexcom G4.  I'm hoping that they approve that.  Please..we can stand some good news.  So fingers and toes crossed..I'll post an update here as soon as we know.

Wonder what they can deny next?  The bright sunny lining on all this?  The pump will be free by then.  Late december is when the six months of starting shots it.  June 26, 2013...so I don't forget.  On December 26, 2013 we can put in a request for it again.  Here's hoping they don't decline a 2nd time.

By then though - Obamacare kicks in and we might be changing up our policies anyway.  She may choose to use Starbucks insurance...it's all a mystery right now....

Diabetes TrialNet- the importance of checking your other kids!

The test for Katie to see her A1c was over a $1000 USD.  So it's beneficial if you have other children to sign them up for the free test from TrialNet!

This is a study being done to see if siblings or other family members carry the autoantibodies for Type 1 Diabetes.  A sibling has a 10% increased risk for developing Type 1 Diabetes.  I saw a blog where the woman just posted that all three of her kids now have type 1 diabetes.  I had them give Mike the fasting glucose test.  But this test by TrialNet is one that will re-test him yearly for no charge to see if he develops the autoantibodies.  This is going to be important.  In return we will answer questions and he may be asked to participate in the study.  So if you have a child with Type 1 Diabetes- you or your child (cousin, nephew, grandparents, etc) may be eligible.  From their site:

Who is eligible?

Anyone between the ages of 1 and 45 years with a sibling, child or parent with type 1 diabetes.

Anyone between the ages of 1 and 20 with a sibling, child, parent, cousin, uncle, aunt, niece, nephew, grandparent or half-sibling with type 1 diabetes.

Hope this helps others who are trying to navigate their way through the quicksand that is Diabetes education!

Uncovering the mystery

Getting the call from the doctor, I can remember answering the phone and just knowing something was wrong.  And yet I was *still* shocked to hear the words- 'she has diabetes' coming out of her mouth.  I wrote down everything and promised to get her to the office in a few minutes for another blood test.  And then I went upstairs to talk to my husband.  He knew something was wrong just by looking at my face.  I said it as calmly as I could and I remember feeling like I was floating above my body and watching the scene.  I ended with "Well type 1 diabetes is the better one, right?" and my husband saying "No it's much worse".  I think when I look back..when I first mentioned diabetes to him- he KNEW it was going to be type 1 and was hoping it wasn't.

I was in la-la land because I was worrying more about cancers of the thyroid and things of that nature.  When I first heard diabetes I admit I was pretty cavalier about it..like it's not a big deal.  But it is.  It's scary as heck and explains a lot of things that had been going on with her.  From attitude (nasty mood swings) to lack of interest in school (a 5.0 gpa straight A student- not caring about her grades) to general sleepiness and just not feeling good.  It's astounding to me that she was still able to exercise.  Really????

Little did I know.  It's been two weeks since she was diagnosed and life as we know it has changed and will change drastically.

Date of Diagnosis - June 21, 2013