Dietician

We are doing our last meeting with the dietician today.  It's been *very* helpful for us to learn all the ins and outs of this disease.  We've learned about counting carbs and good meal choices but most importantly as a parent- it's enabled me to not have to be the HEAVY on everything.

Katie still eats sugar.  Please don't think she doesn't.  She gets cravings like any other kid out there. We just ask her to limit that sugar and to make choices about carbs by choosing good carbs.  She knows how she feels when she eats candy or has ice cream.  But I don't see her giving it up forever.  So now when she has a Blizzard from DQ it's a small one and only when her numbers are running lower.  She has to drink water to bring her sugars down.  Exercise also is excellent for it.

Which is excellent because I need to exercise anyway.  Fruits and veggies are better choices.  Fruits are a better choice for carbs than ice cream or sugar.  But she also needs to avoid the sugar-free options that are great for type 2 diabetics if that is their choice.  Katie has a mom and dad who are educated in science.  I have a BS in Biology and a minor in Chemistry.  I'm getting my masters in Environmental Biology.  Needless to say I have opinions on aspartame and other poisons out there.  But this is our personal choice.  Plus sugar-free foods we found out have a lot of fat and other additives in them added in to make them more palatable.

We try and live more on fresh foods and eat that way.  We aren't perfect- no one is.  But these classes have given us a way to learn about what we need to do to keep Katie's organs as healthy as possible.  And she's handling it like a pro.

She wants to be a doctor or a personal trainer and she's all about health.  I see her easily getting her degrees and then going on to help find a cure for Type 1 diabetes.  She's going to be passionate about it because she's living it.  Go get 'em honey- we are behind you 100% all the way!  So, so proud of our girl!

How low can you go?

Katie's Accu-Chek Nano Glucometer

55.  Yes that's how low.  That's lower than the low the endo office says to be worried about hypoglycemia at.  And it's the low we experienced the other day.  We had left the endo office after learning how to use the Dexcom CGM.  The problem was that when Katie inserted it..it hurt like the dickens (as my gram used to say) and she sobbed and held her breath.  Colleen (most awesome nurse practitioner and lifesaver) told her to BREATHE.  And kind of shook her.  I was getting into place to grab her.  It would have been SO much easier had her 55 low hit there.  But oh no..we had the joy of experiencing this low when she was in the car.

I had let her sit in the front of the jetta.  Kev was driving.  She was saying we should get her lunch on the way home..although now that I think back, I think *I* had said that.  So she was testing her blood in anticipation for eating.  We were looking for fast food that wasn't surrounded by construction because she was already a little late for work at Starbucks.

I *should* have known she was low when she growled at me about calling SB to let them know she'd be late.  When she tested her blood..she gasped and I said..what were the numbers?  She couldn't even TALK guys.  She was literally shaking by this point and showed me the meter and then it fell out of her fingers.  I saw 55 in a blur and started yelling to Kev to pull over ANYwhere that had food.

He is a man.  My love, my soulmate but he cannot change directions on a dime.  He just can't.  Some of it could be the hydrocephalus too...so he's in a fog trying to figure out WHERE and I'm like..there is a Dunkin' Donuts up ahead- pull in there...he's saying where...I'm getting annoyed...katie has dropped her whole bag now...there went the damn glucagon (I can assure you there is NO training on what to do when the glucagon is under your semi-conscious kid's seat in a moving vehicle).

I tell him to turn and it was the WRONG turn..I almost jumped out of the car to run to the DD which was right next door but not accessible but didn't.  I get him to get in the right spot as Katie starts moaning..and we park and I jump out.  I look back and he's joining me trying to lock the car and is like..Katie get out of the car.  I run back and I don't think I was very polite as I suggest he stay with her and find the damn stuff she dropped.

I can tell you two things...a) he stayed and gathered it all and b) that lady at the DD thinks I have QUITE the addiction to caffeine.  I got her an iced mocha something....a muffin, some munchkins and I don't know what all else.  I think I spent $20 trying to get enough carbs in my hands.  Who has time to read the nutrition when their kid is so low she could slip into that coma?  It was almost comical when I returned and Kev got the puppy dog eyes and looked at me and asked what I got HIM.

There are days I am not sure I am going to survive Katie's Type 1 Diabetes and Kev's hydrocephalus and that G-d must have *quite* the sense of humor over this.  Her blood sugar literally did not raise enough for her to work or drive herself.  So I dropped Kev off..got her fast food (horrid but fast).  And had to drive her to work.  I stayed for her to calibrate the Dexcom (once you do an insertion- it takes I think 12 hours for it to start working so it wouldn't have beeped if she was 55- thank GOODNESS we were testing before her noon meal and it was low then!)  My whole day was devoted to her diabetes again.  I'm not getting much accomplished at home other than clean up, make her meals and then go to appointments.  I'm so glad we are getting her stabilized (as much as we can) now because fall will be brutal- I'm in classes three days a week and she's in school 3-4 days.

I know I have a ton of gray hair from that experience.  We had glucose tablets, icing, snacks, etc.  But when it's dropped under a seat you are in a super scary predicament.  Usually (the lowest she's ever been is 59) you have time to get her carbs into her (15 g) and get her blood sugars up.  When it's at 55...not so much.  At any point she can go into a seizure and not be able to swallow..if she can't swallow it's glucagon time.

Glucagon injection kit- with us always!

I want a Diabetes boot camp for parents.  They can put me through scenarios so I can be prepared.  Ha.

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!

When it rains, It Pours....

So we get Kev's scan results back on Thurs..or maybe it was Wed...hard to remember now.  Just to update those not in the know- Kev is my husband of almost 19 years (together almost 20 years now).  He had a horrible accident in early May and the car hydroplaned and rolled off the highway in Michigan.  He had a horrible concussion and somehow managed to convince the paramedics to release him- or they just didn't offer to bring him to the ER.  When he came to in the car- they were there standing over him..strangely they didn't stabilize his neck or anything.  SO weird.  Anyway we picked him up at a Big Boy restaurant where the state trooper dropped him off (INJURED) and the poor waitress was beside herself keeping an eye on him and getting reamed out by her bosses for letting him stay.

Anyway- his CT scan was not clear....it took me arguing to convince him to see our doc and even more to get him to get a CT.  We were surprised when it came back that he had hydrocephalus - moderate to severe.  We were told we should see a neurosurgeon ASAP but we waited another month to re-do the CT scan.  After that scan it appears there has been no change so we go to see the neurosurgeon on the 29th of July.

Another binder will most likely be started to keep track of his bills, etc  :)

And we will keep you all posted.  Please keep us in your thoughts and prayers!

Everything and the kitchen sink

Katie is carrying SO many items with her these days.  The education we went to was awesome..they gave her a customized (glorified I guess) lunchbox.  So at least her needles are not visible, etc She carries in this little lunchbox:

-glucose monitor
-strips
-lancets
-lancing device
-carb counting book
-sharps container
-insulin pen
-needles for that pen
-glucose tablets
-snack
-logbook
-glucagon (sort of big container with her shot and glucagon for if she goes hypoglycemic)

and probably some other stuff I am forgetting.  She carries this everywhere with her.  To bed, to the store, to the car.  She can't leave it in the car because the insulin can denature in extreme heat or cold (it's a protein folks...and yes she knows the word denature..from me and her AP Bio class).

The goal is to do away with some of this stuff...the strips will still be there..the glucose monitor I believe becomes integrated with her pump but that means all new test strips..at all new $$$ and arguing with the insurance company.

Actually reading over her list I'm laughing b/c really the ONLY item she won't be carrying will be the insulin - I think..but then again- when she needs to bolus- then what?

This is a lot of stuff to figure out!

Hitting that wall

For my friends and family- seriously?  Did I not predict locusts soon?  So Katie had a car accident in October- with Mike in the car after the homecoming game.  Her fault but the car was totaled and they were lucky to get out alive.  Then after that in the spring our house flooded with the bad storms that flooded the Chicago area.  We pulled up all the carpet in the basement (after sucking up 2 inches of water), replaced the sump pump and carried on.  Then in May- Kev was driving back from MI and got in a major accident- car rolled, he's lucky to be alive.  Dishwasher dies next...and now the fridge is starting to go.  Plus we get word that Kev's CT scan was NOT clear like we had hoped.....so we have to go a neurologist now to see what is going on with his brain (I'm glad that the ct scan caught *it* - whatever it may be).  Katie got diabetes and I just keep saying- ok this is it right?  I mean how much more can we all deal with?

I'm calling 2012-2013- the year I'd like to forget.  Please.  :)  Every single event has corresponded to me being in the field doing my research for my thesis...can I just say that I am nervously looking at August field day?  I mean really.  I just don't want to hear the next worst thing.

October Crash- bye bye van!

Now we have it easy compared to others..I know this....and I am so grateful.  So for each of those things:

October- car totaled- but my kids survived...amazing!!!!!  Plus we got a replacement used car that was not that much money out of pocket.  (Ok 4 grand is a lot but it could have been worse right?)

Spring- it flooded but lots of people lost their whole homes.  I lost carpet and padding.  Yes the basement has some issues (We are pulling off baseboards this weekend to see if there is hidden mold- I'm deathly allergic) but otherwise we got off rather easy with it.  And a desktop computer might have bitten the dust since the tower sat on the carpet.  But overall- we have a house- it wasn't leveled with the tornado, etc and so on.

Flood of 2013

May- Kev is alive....and in an odd twist when I called the guy I got my red Jetta TDI from- he had just gotten one at auction that very day and it was the first Jetta he got his hands on since the last one- he sold us.  :)  So that's a good twist.  The insurance company covered all but a few hundred to replace that car (unlike the van that had collision only) and Kev is alive.  Major fluid on brain- but he is functional.
Oh and Kev's car?  Imagine the van times 20.  The whole top of the car was mangled as it rolled a few times...the car un-useable totally.
Dishwasher?  The new one is so quiet..we could have just done dishes by hand and I would have gladly- but am so grateful I don't have to!  I love, love, love the new dishwasher  :)

So maybe we are having a run of good luck to go along with our bad luck?  I have to keep on looking at the silver lining because if I don't I might not make it.  It's funny- a professor at my school suggested back when Katie got in the accident that I drop out of the program and yet I am still plugging away.  To heck with that.  We can make it through this.  I firmly believe G-d doesn't give us more than we can handle...and hoping that he opens that window soon if the door is closed..because beating my head against it seems counterproductive!

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....

Denial is a river in Egypt?

Yes we got the "dreaded" denial call. I don't get this.  We have an 8500 deductible.  So if you make us wait 6 mos (the reasoning was that she hasn't been on insulin shots long enough- but wouldn't her endo actually be the better one to make that call insurance company?) - we get the pump FREE...all supplies free, etc because by then we will most likely have maxed out our deductible (we already are 3300 into it!).  But if we get it now and they approve it....we pay $1666 out of pocket.  Well played insurance company- well played......

Is it a tragedy if she doesn't get it?  To Katie yes- so for that reason alone I want it.  But truly her numbers are all over still....we are worrying about that dreaded under 100 blood sugar.  She's now working full time and her numbers are just wildly swinging.  Today she was 70 at one point.  And she's not really thinking clearly then.  She's not wanting to take time to deal with it..because as she says she's FINE...well she's 18 and invincible- but yet she's fragile...super fragile.

Anyway- the next step after denial is a peer-to-peer- her doctor talks to the insurance doctor to explain why they want the pump and so fast.  I don't know what the recourse is after if she's still denied.  I don't  know if because the reasoning is it hasn't been 6 mos that they will just resubmit it again in 6 mos?

And then we found out that the Dexcom Continuous Glucose Monitor (CGM) wasn't approved for sure yet either....we thought that it was since we submitted a payment plan.  So now we wait for that also.  Fingers crossed this one goes through.  With her numbers so all over the place- this device will be crucial in seeing her trends and also for notifying her if she has high or low blood sugar- which means she will sleep better at night.

We are hoping to re-carpet the basement bedroom (where she sleeps- lost carpeting in basement in flood a few months back) to make her room better....but that won't be instantaneously.

I don't get why the insurance company is so obnoxious about things either- why deny us her test strips? I don't get it.  Esp when your discount means I pay $100 over $112 or something stupid.  Why does every step require four steps back?  What do they think we are doing with her test strips?  What do they think will be the problem with us getting a pump??

I'll keep you all posted on how things progress after the peer-to-peer.  Hoping our Dr. Kassar is as persuasive as he seems!

Getting organized

All I can say is- use a binder.  It helped so much.  The Diabetes education netted us the same handouts in some cases at the endo.  The JDRF sent us a supply pack- if you are newly diagnosed- go to their site and order one.  It's adorable for the kids.  A backback with a teddy bear and supplies and coupons!

I sorted the binder by sections- handouts, appts, paperwork from doctor, insulin section and then one for the dietician and then the pump.  I just hole punch stuff right into the binder and grab it with us for appts.

I do have a separate one for medical bills and insurance statements to reconcile.  And also her prescriptions.

The Real Deal

We were told that she could swing into low blood sugars.  They showed me the handout where the guy looks cranky.  I was told she could get belligerent.  I had no idea what the meant.  But we did have the episode and it's important for other parents wondering if it's normal.

First it's laughable that I could convince a fully grown woman-child to eat a snack.  HAHAHAHAHA...she's stronger than I am (I have the bruises to prove it) and I had no idea what would set her off.  It turns out it was me texting to see where she was after work.  For most other 18 year olds..the eye rolling is normal.  What is not is a 20 min meltdown of destruction and chair throwing, kicking, punching, etc.  Perhaps more frank language would have been helpful from the doctor's office.  Or maybe no one wants to talk about it?

I'm not posting this out there for all to embarrass myself or my daughter.  But it was scary as crap and I was so glad I was dead honest with my best friend.  Who told me it was ok.  She didn't judge because frankly- that was not Katie who I was dealing with.  I think it was a combination of the stress of the disease combined with low blood sugar that sent her over the edge.  She kept screaming she wasn't mad at the disease because that would be STUPID..she thought we were the idiots (juicier words inserted please) and she hated US.  Her solution was to stop her insulin and move out.  I didn't handle it well.  Kev didn't either.  We both were upset. 

She finally got herself a snack and was able to think clearly enough to realize that she overreacted.  This is the same type of outburst we were dealing with for over a year now..nice to know our sweetheart daughter didn't mean it all those times.  And if she really was mad at us...maybe we will just give her a pass  :)

The scary part is that for Katie- her low sugar right now is in the 100s.  Her body loves being in the 200s.  So as she adjusts to having insulin in her body again she will have a lower and lower threshold before she's experiencing hypoglycemia.

We are now waiting for the honeymoon period.  Some kids for reasons totally not known- experience a lack of symptoms and their diabetes seems to go away.  Some might not even need insulin.  It's like their bodies get enough insulin that any islet (eyelet) cells left kick into gear and try and do what they are supposed to.  But eventually they die off.  The longest period of time this could be is a year or so.

And is it wrong of me to hope this doesn't happen?  All the insulin has a shelf life of 30 days.  That would be money down the drain if she ends up NOT needing it.

Some kids don't Honeymoon at all.  And don't get me wrong..I say kids because I have a kid with it.  But you can be diagnosed with T1D as an adult too.  Rarer but not impossible!

Type 1 vs. Type 2 Diabetes and Mythbusters

One of the things I've found myself repeating over and over is that Type 1 and Type 2 diabetes are caused due to very different reasons.

Type 1 Diabetes- 

IDDM (Insulin-Dependent Diabetes Mellitus) or was known as Childhood or Juvenile diabetes

This is the diabetes you hear ALL the horror stories about- people dying in their sleep...not managing it well.  Insulin shots, etc.  In the "olden" days (think back to Steel Magnolias) it was not as well controlled as it is today.  There have been many strides made to help control this life-threatening disease.  The statistic of 1 in 20 kids will die from it before the age of 18, really makes you stop and think!

Type 1 Diabetics (aka Katie's type)- make little or no insulin.  Insulin is needed because it's the keys that open the lock that is the on the door to  your cells.  Once insulin comes along and opens this lock- glucose can be utilized by that cell.  Glucose (aka Sugar) is used or burned for energy.  When it sits in our blood vessels these nick the vessel walls and can cause damage to organs and other tissues.  So what makes insulin?  Your pancreas.  When the pancreas does NOT work properly- it cannot product insulin- which in turn regulates all the glucose (sugar) in your body.  So in Katie's case- her Islet (eyelet) cells cannot make insulin or do and are attack by her own body.  Type 1 diabetes is an autoimmune disorder.

Type 2 Diabetes-

NIDDM (Non-Insulin Dependent Mellitus)

Prevents your body from using the insulin.  Your body DOES make insulin but usually not enough.  Most people with diabetes (about 95%) have type 2!  This occurs in usually older, overweight people.  8 out of 10 people with type 2 diabetes are overweight.  So that's why this type is considered controllable with pills and diet/exercise.  

Katie cannot just change her diet/exercise and magically her pancreas will starting making insulin.  Katie also cannot just manage her diabetes by taking a pill.  (Yes I have gotten some messages from well meaning family/friends telling me she will be fine if she just changes her diet).  It's ok because two weeks earlier I may have been one of those types of people!  I had NO idea how serious type 1 Diabetes was - or I had blocked it out of my mind.  I've had plenty of experience with Type 2 diabetes. It's on both sides of my family and I've dealt with it with both parents.

Myth 1- Not cured with diet and exercise (for that matter neither is type 2- it can go into remission but usually will return later in life)

Myth 2- Type 2 diabetics can't become type 1.  This is simply not true..because a lot of times they WILL eventually need insulin to survive.  

Myth 3- Type 1 diabetics can just take a pill.  There is no effective way to give insulin in a pill.  The acidic nature of the stomach would break down the pill before it could be absorbed across the stomach wall.

Myth 4-  Diabetes is not contagious.  I feel bad for Katie because some of her friends didn't know how to handle it.  I explained that some friends just didn't know what to say to her when faced with their own mortality.  There were some people who acted like they could catch it.  

Symptoms of diabetes:

-Frequent urination

-Excessive hunger and thirst

-Weight loss

-Changes in behavior

Now all of this can be explained also by exercising, drinking more water, dieting, being 18 and moody, being a senior and so on and so on.  We caught it early.  We were lucky.  We just keep repeating that to  ourselves.  Over and over.

If you have any questions on Katie or Type 1 diabetes- we are more than willing to talk to others!

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!

Insurance

I don't know why I get surprised....I head to the CVS to get her prescription filled for test strips....not drugs we can re-sell on the street people and the insurance DECLINES her for this (out of all the other $$$$ crap we have to do or pay for).  Why?  Because she just got strips over two weeks ago and she should not be out yet.  Ok...right except that amazingly enough- she IS.  She's a newly diagnosed diabetic..whose sugars are wildly out of control...she's shaky and trying to do this for herself...

Imagine being an adult and then having to ask your Mommy or Daddy every time you need insulin or a stick for bgm (blood glucose monitoring).  Right....sure....

Anyway- she did waste about 20 between not being able to get blood out (Avoid One-Touch Delica....that is by far the worst system we've seen) or because the strip had an error right out of the gate.  Do you know that I want to punch a wall when I see my kid shaking and crying because she's wasted another strip that cost us a $1.  And now the insurance wants to deny her the damn strips?

Oh and let's not forget- we have a deductible - $8500 that is completely out of pocket at 100% before the insurance kicks in.  And her delica strips were a whopping $102 or something crazy for 100 strips..so what the heck are they complaining about???!  We basically got little to no discount for these strips and then insurance declines us.

At any rate- we realized we had supplies for another meter someone had given us...(Bayer Contour) and while she loves the fast-clik of the Accu-Chek Nano- she will use that lancing device with the Bayer Contour machine for now.  Why not fight it?  Because we just found out that when Katie goes on the OmniPod insulin pump those are DIFFERENT test strips.

Seriously people???  Y'all can't get your act together and make sure that the strips and the meter and the pump and the cgm are all the same?  Really?

I also got the call for the pump..it will be 1600 to get her started with a 30 day supply.  Then a 3 month supply of pods is almost 269 a month.  We are for sure going to max out that deductible soon.  One can only hope.  Because after the deductible is met the damn thing is FREE.  Lovely.  So we have to pay that and then another 1047 for the CGM and 300 a month in supplies for that.  Ugh - sticker shock...everywhere we go.

They do not kid when they say that this is one of the most $$$$ diseases to manage.  And yet I can't bear to see my kid stick herself endless times a day.

But hey - thanks to our insurance (which will be un-named but has human in the title!) they added stress to my day.  I felt like a junkie arguing for her next fix and begging for more test strips..because obviously my daughter ran out because she's doing them for fun.  Drive-up glucose testing for free at Katie's house.  Morons.

Getting by with a little help from my friends

This is important..you need to let those close to your heart in...in to see the ugliness this disease causes..the sobbing and temper tantrums (yours and your womanchild's) in order to get the best advice. I cannot stress this enough.  If it wasn't for my good friend - I would be lost.  She took what I saw as a hopeless situation and my back against the wall (and for the record - Katie's too) and made a valid suggestion.

She pointed out that my concern over Katie being in her bedroom in the basement didn't matter truly because if Katie went into hypoglycemia - she could be in MY room and my bed for all that it mattered and I wouldn't be able to save her.  Scary as all get out- but yet so true.  So dang true.

There will be more from me about this..but thank you love.  If it wasn't for saner and calmer heads prevailing- the fighting would STILL be going on.  Tonight is the first time in three nights we haven't had a screaming match about her safety and our comfort levels in letting her spread her wings.

The stakes are SO much higher in a seriously ill child.  And if you think a) she's not seriously ill or b) she's not a child - then you are so, so mistaken.

I'm going to need my friends in the months to come..because I stupidly thought things would be FINE now that we had a diagnosis but the reality is that we are just starting this climb and a climb it will be at times too.  But I will do anything to make sure that Katie is around to scream and cry and be safe as long as possible.

I owe you one Lynda!!  Hugs and love xoxo.

JDRF Walk for the Cure

Katie is not one to just sit around and accept anything.  She decided she wanted to raise money for the Juvenile Diabetes Research Foundation in order to help find a cure.

In a nutshell...the JDRF asks that your teammates all raise $100 each (it's a suggestion).  We are getting a big group together to walk- anyone is welcome to join us and if you can't walk- you can walk virtually.  Here is a link to Katie's Team page- Katie's Warriors!

Anyone who signs up to walk with our team - we are asking to please try and raise funds...there are forms you can print out to get donations in person (from workmates, to friends, etc) or you can direct people to our page to donate online!

Katie's goal is to raise $5,000.  If we get anyone reading this blog other than family and friends (or myself) I MAY do a giveaway if you post how much you've donated.  Just a comment with your name and the amount you donated would be fine.  We'd love the support to show Katie we care!

Appointment Number 2

After dealing with Dr. Kassar- we left with instructions to call on stuff and to come back on Friday for the more in depth appointment.  We also were told we would be going for diabetes education.  (Which our regular doc- Doc Opalka had already referred us out for).

I canNOT stress enough being organized when you go in for your appointments.  My first appointment I had put together a symptom timeline for them so they could see how we figured out it was diabetes before the doctors did.  I also included weights in that.  Then I took copies so they had a set and I had a set.  I also put together a list of questions (If anyone wants to know that list- just ask me- I'll email you a copy).  My questions though were quickly separated in my mind in the NEED TO KNOW and NEED TO KNOW NOW categories.

Dr. K really appreciated that we were so organized and that I had done all that.  In addition to that I had copied the test results that Dr. O gave me and Dr O also accessed the hospital database to get me any sugars or tests Katie had in the past year.  They were able to add all of that to the file.  When Dr. K came in, I mentioned it was in there but didn't focus on it. While it's interesting reading- we already KNEW she had diabetes...the why or how we got there wasn't important at THAT moment.

So we head to our appointment on friday and in the meantime C called us the next day and someone else checked in the day after.  This is truly a hands-on office.  On Friday we were told that Katie can really eat whatever she wants in moderation.  But in moderation.  Seriously- you can't just eat a ton of sugar- you can insulin fix (add in more to cover it) but they aren't sure what it does in the long run and it's just not super healthy.  Esp since right now she's running sugars when eating in the 500s.

Friday's appointment focused on carb counting.  OMG- talk about a lot of information.  And Colleen also went over ALL the sheets again- which I actually appreciated.  Carb counting was going ok because Katie had downloaded an app when she first found out she was diabetic before our first Dr. K appointment and went in with it already filled in!  She said that since we did that- Katie obviously was ready to talk pumps.  That it depended on our insurance but she could be in a CGM (Continuous Glucose Monitor) and an Insulin Pump.  They really didn't sway us on any one brand.  IP only have seven? brands on the market and only one is tubeless - the OmniPod by Insulet.  These are nifty devices- I'll post about them separately later this week.  But they are NOT cheap.

In the meantime we were told to make the appointment for education- 10 hours of it.  When she called to see how Katie's numbers were - and found out we already had an appointment she was surprised...I'm off school right now other than research and Katie starts junior college locally this fall.  (this was her grand plan because she's wanting to be a doctor and knows school is $$$) - we are so happy this was the decision as it gives her time to get acclimated to this illness and ability to manage it before leaving.

Meeting Dr. Kassar

We went in early to fill out paperwork.  It took 35-40 min to get there but we felt this was our only hope.  I was armed with questions up the wazoo.  So was Katie.  And then we get there and I realize..this is totally different.

She had just turned 18 in May.  It means she's legally an adult.  So in order for me to be there or do anything with or for her she has to fill out paperwork.  It also means when she swings high or low with mood swings or blood sugar- the first thing she always threatens to do is to remove my access.  Since we pay for her medical and also all her bills - this is an empty threat but it still terrifies me.  There is no way this adult-child is ready to handle this.  She's barely able to remember to brush her teeth or let the dog out.  Why 18 is considered being an adult is beyond me!

So she signs all the papers..Dr Kassar is a doll..funny and very adamant that if Katie only wants a doctor to review her sugars and sign a prescription pad she needs to not waste his time and leave now.  He tells her off the bat that she WILL be healthy and live a long life.  She WILL be able to have kids if she talks to him and sets it up with him and so on.

He's SURE it's type 1.  NO doubt in his mind- but we will do the autoantibody test to make sure (it was 100% positive for this).  He refers us to his nurse practitioner and asks if we can wait 30 min until she's free.  Yes of course..you squeeze us in and we will wait however long it takes.  He does seem impressed that we cleared our schedule and will make this our priority.

What follows is so much paperwork and information my head hurt.  Literally hurt.  I went home with a BAG full of sheets and information and I know she only gave me half the information.  I sat back and let Katie explain what she knew or didn't know.  Asked questions when I had some and just basically let Katie handle it.  She was going over insulin shots and Katie was just beside herself sobbing so C (nurse) finally said..ok that's it..we are doing the insulin shot first.  Katie thought *I* was going to give her the shot but I had to get tough (otherwise I'd be a blubbering mess!) and told her NO way..she's in college and an adult and while I would be her backup WHENever she needed - she needed to learn to test her blood and give herself insulin.  It's literally going to keep her alive.

So C gave her the first unit for her- she was freaked out as it was being prepared and then shot time..and wouldn't you know- Katie said...That's it?!  That was not so bad.

I said, without missing a beat- "Well C, we obviously need a bigger needle to match that reaction of sobbing Katie gave us".  She looked taken aback- but we always use humor to diffuse situations here.  They will get used to us.

We left with that mountain and a good attitude (that day).

The next steps....

Looking at her photo on the last post..man we should have noticed how pale and sick she looked.  In this society though, even her old doctor (a pediatrician) said her BMI looked awesome and she looked fine.  In reality she was TOO thin..had lost too much weight too quick, etc and so on.

So after the call..we took her in for a blood test that is called an A1c.  We were not even worrying about our deductible at this point (that would come in week 2).  To explain an A1c- this is a test that looks at a person's red blood cells for the last few months.  It basically looks at your glycated hemoglobin (who knew that the Animal Phys class and cell bio would come in so handy for me?) Glycated is a fancy name for coated in sugar and your blood cells have a better memory than most people.  So you can get a snapshot of what has been going on in the past.  They use this test for Type 1 and Type 2 diabetics.  The Mayo Clinic  offers a good overview on what this test was all about.  Suffice it to say that a normal A1c is usually around 6.5%.  Katie's came back at a whopping 12.1%.  This is not funny at all...but we both chuckled at our first appointment with the endocrinologist when the nurse was explaining her A1c was so high it was off the chart! (The red area is where she SHOULD be!)

I apologize for the wordiness- eventually we can be shorter in our posts...but it's hard to get it all down. This is ultimately going to be where I direct all family and friends so I can stop repeating myself 20 times a day too!

So after the A1c test our lovely doctor (the new one - who was mine for a few years now) Dr O. told us it was most likely type 1 Diabetes and we needed to see an endocrinologist immediately.  She only liked one endo in our whole area (outside Chicago).  So we left with a prescription for a glucose monitor and a referral to Dr. K.  We still hadn't gotten the A1C test results when we left her office though.

It's a bit like falling down the rabbit hole.  Literally.  I'm in the middle of doing my thesis research and this diagnosis came on the tail end of a grueling set of days- hours in the field in heat, labwork for 12 hour days and then straight into researching this disease!

So I call Dr. K only to find out the earlier they could see Katie was in AUGUST.  Oh heck no.  They just tell me her blood sugars fasting are 298- ---- 298 people.....it's supposed to be around 70 for her age and health!  Can you imagine the damage that would happen.  Dr. O was amazed we had tested for this disease b/c with most people they see them when they are wheeled into the ER in a coma.  Yes a coma.  So to be able to figure it out and quickly in their eyes was amazing.  So I explain to the office I can't wait until August and I would take ANY appt no matter what.  She found one for this coming week- July 9th.  I went back to Dr O and they came out to talk to me and reassure me.  They called with the A1c numbers a few days later and said it was super high and we could NOT wait until 7/9/13 for an appt.  So they called for me.  This was because the secretary there said sometimes they will squeeze them in if the general doctor calls up and requests.

Thank heavens for Dr. O's office.  They rocked with this.  So they got us in 6/26.  It was hysterical because when we met Dr. K- he kept saying how did we get in.  I said..well I called..and he's like NO..how did you get in THIS week....I'm leaving for Vienna on Friday for 10 days.  Talk about divine intervention!

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