Tuesday, April 24, 2012

APPROVAL!

I just got word that Seth's pump has been approved and shipped out this morning.  It will be here on Friday and we do pump training on Monday!  Woo Hoo.  I am so excited!  Seth is going to be thrilled.

Now Medtronic is submitting to see if insurance will approve a Continuous Glucose Monitoring System...Fingers crossed this next valuable piece of D weaponry will soon be on it's way to us.

Saturday, Seth spent the day with a friend and his dad.  They went bike riding, out to lunch and played at a park.  Easy peasy right?  This was the first time that Seth has gone on his own outside of our safety net since his diagnosis, and I was so proud of how he handled it.  The dad was a champ too.  He listened to all my concerns and my quick training and accepted the challenge.  I kept my cell phone close by and off they went, while hubby and I took the girls to lunch and a movie.  Seth called me once to tell me that they had gone to lunch, he chose deep fried seafood.  He and dad SWAGGED at 30 carbs, so he dosed 2 units.  Since he called me 90 minutes after lunch and was at 115, I'd say he did pretty good.

What I did learn though is...we will be buying another cell phone.  Our rule has always been, no cell phones until driving age (16)...but with this diagnosis I want another cell phone.  It will be called the family cell phone  to eliminate the fight between Seth and Leah, this way if they go ride their bike down the block, if Seth has a problem, Leah can call me...if they don't come home on time, I can call them, etc.  Also,  I can train Seth (and Leah) to call and check in.  I would like to have heard from Seth a little more, like when he was SWAGGING his lunch carbs, etc. so he and I could make the decision.  But overall, I am really proud of the way he handled himself and I am grateful for a parent who wasn't scared of taking my son was has D...even when I handed him a handout on hypoglycemia, and a bag of snacks and showed him how Seth tests himself and gave him a range of numbers with a list of what to do within each range.  He didn't blink, he told me to have a great day.  AWESOME!  And I am sure my son loved being as normal as possible that day...EVEN MORE AWESOME!!!

Wednesday, April 18, 2012

Really? Good grief.

So...I've been really quiet of late and totally not fulfilling my HAWMC duties.  I've felt icky which progressed to feeling pretty nasty...so much so that I finally got some tests done and preliminary results are in and it looks like I have kidney stones.

I'm going back to bed...I have another test in the morning.

Monday, April 16, 2012

HAWMC #16: Pinboard

Todays challenge is to create a pinterest board for your health focus...no problem.  I started a D board a while ago so I just added a few more things to it.

our D life

You can click on the link and it will take you to it, each picture has a description.  Enjoy!

Friday, April 13, 2012

HAWMC #13: Top 10 List


Today’s prompt is: 10 Things I Couldn’t Live Without.  Write a list of the 10 things you need (or love most).  Ooh, cue the band ala David Letterman:

  1. My Testimony of Jesus Christ.  I could not live without the knowledge that there is a way for me to return to live with my Heavenly Father.  That my sins can be forgiven, the price has been paid.  And the knowledge that my family, whom I love dearly, can be together for eternity.  This is powerful and I lean on this testimony heavily. 
  2. My family. I love them fiercely.
  3. Insulin for my son and all related diabetic supplies…which would include candy.
  4.  My Peanut.  Peanut is my yorkie dog.  I love her and the feeling is mutual.  I rescued her from the pound and she shows me gratitude for that on a daily basis.  My kids are growing up, my husband is gone a lot and Peanut is always there for me. She lives to sit in my lap and love me and snuggle me and make me feel good.  I LOVE my peanie poo.
  5. My car.  I know this sounds so materialistic.  But I spend a good portion of time in my car.  This is the first car that I got to pick out (within reason).  Everything I have had previous to this has been about the kids and the cheapest price possible…or was what the family needed to have.  But this…this is all mine.  I love my 2012 Kia Sorrento.  She is shiny black. I named her Echo and she has a Pink Princess crown on her antennae.
  6. My iPhone.  It connects me to my family and my friends.  Actually, I really love most of the modern technologies that we have in place.  I love them when they help us connect.  Facetime with my sister and her kids thousands of miles away is wonderful.  Technology does concern me when it causes us to disconnect from interpersonal relationships.  I see it all the time working at the high school level.
  7. Books…sigh.  I love to read, to escape my reality and go to a fantasy created for me by an author.  Little Women is my all-time favorite book.  I have read it once a year since I was in 3rd grade.
  8. My Camera.  I love to take pictures and document our life.  I recently got a Canon 7D and I love it.  I have also fallen in love with my iPhone camera, very unobtrusive and makes it so easy to snap those candid moments without the posed smile or the photo bomb. Seriously, does anyone else have a son who feels the need to do that in every.single.picture?
  9. Disney…Disney is my happy place and where I love to go on vacation.  2 of my 3 kids agree with me.  At Disney I get to be a kid again.

    10. The Beach…mmm, I love to listen to the waves and the birds at the beach.  It fills me with peace and serenity.  Our beach up here is cold, I would love to go to a warm beach.  I think I would really enjoy that.
     
    Really the first 3 are the things I could not live without…nothing else would matter.  There is a big difference between what I could live without and what I love. BUT since this is also a love list, I got to add 4-10, and to be honest I struggled with what to even put there.

Thursday, April 12, 2012

HAWMC #12: Stream of Thought

Today we are to do a stream of consciousness write. 

GREAT!  This morning I get to do a D vomit… I need it.
Last night Seth was running low, he was 70 a half hour before bed.  Going to bed we like to have him between 120-150…Peeps we have found raise his blood sugar superfast.  Is anyone surprised by this?  So we gave him 2 peeps (14 carbs) from his Easter Candy and then I had him eat ½ an apple and 1 packet of Almond Butter so he would have some fat to sustain the blood sugar.  We tested 30 minutes later and he was 178…oops.  But we have also increased his Lantus to 10 units, so I wasn’t overly concerned.  I figured if he was still high at 3 am, I could correct.  I sent Seth to bed and set my alarm for 3.
I had a difficult time falling asleep.  My mom is going through some health issues, I’m worried and I had a hard time shutting it off.  I remember looking at the clock for the last time at 1:00.  And then…my alarm goes off and I look at it and it is:  6:30
What the what?  My alarm was still set for 3:00 so I must have turned it off and gone right on sleeping.  Not cool.  I walk into Seth’s room to wake him up for his day and (my boy who HATES night time testing) opens one eye and says “aren’t you lucky I woke up this morning, I don’t remember seeing you in the middle of the night.”
I laughed and said I am very glad to see you this morning and I must have been extremely tired last night to sleep through something that important.
But on the inside?  I was filled with guilt and doubt.  I had messed up in a big way and I knew it.  I 100% believe in night testing. I do it 4-5 nights a week and Mark does it the other nights when he is off work (he works nights so is not home).  This week Mark had to work some extra shifts so was unable to relieve me and it took its toll.  I would like to say we are 100% at our middle of the night testing, but about once every 2 weeks, we miss a night due to exhaustion.  I don’t know how other parents do it as consistently as they do.  It is an area I need to work on.  Most nights I am unable to fall back to sleep after the 3 am check, so I average about 4 hours of sleep a night, it takes its toll and eventually sleep wins out.  I just pray that the night that sleep wins for me, is not the night that D wins the battle for my son…I could never live with myself.  I am hoping that the pump will help with this and I am fighting for a continuous glucose monitor that will alarm when he goes low to give me some more peace of mind.
D is exhausting and I don’t even live with it the way my son does.

Tuesday, April 10, 2012

HAWMC#10: Dear 16 Year Old Me

Todays HAWMC prompt is to write a letter to 16 year old me...oh the things I would love to say.  Things my parents didn't know how to say.

Dear 16 Year Old Me:
Do not take a year off from school (between finishing high school and starting college)…you think you will go back, and you will try, but life circumstances will prevent you from finishing.  So just do it while you are still in full time school mode.  I know you want to be a stay at home mom.  Remember, kids grow up.  I don’t care if you ever use your degree, it will always give you strength and courage to have it…because life doesn’t always work out the way we think it will and you never know when you might need it.
Choose your friends wisely.  It is better to have a few close friends than to have a lot of casual friends.
Look at yourself in the mirror.  You are a size 11 and you are NOT FAT.  Do not let society or other people’s opinions define you.  You are beautiful.  And while we are on this subject, don’t wear your clothes so tight that you have a muffin top…it’s all the rage now days and it’s not attractive…sit that style out.
Value yourself and do not waste time on those who do not value you in the same way.
You are a daughter of your Heavenly Father, carry that knowledge with you everywhere you go.  He loves you and wants the best for you.  Strive to live your life in a way that exemplifies his teachings and values the gift of the body he gave you.
Choose a spouse who cherishes you, respects you and sees you as a partner . A spouse that you can love and respect, and who will do the same for you.   A spouse who makes your heart race, when you answer the phone and discover he’s on the other end.  A spouse who hurries home at the end of the day because he can’t wait to see you and the family you have created.  A spouse who honor’s your role as wife and mother.  A spouse who tries every day to show you how much you mean to him…make sure to do the same for him.
Remember to laugh, life is funny, embrace laughter, it helps.  Sometimes breaking out into a good craugh is even better.  It’s just something that comes naturally to the women in our family, you’ll understand when it happens to you.  Life is filled with beautiful moments, don’t forget to see the beauty around you.  Life is not easy, but looking back, you will see that each experience has shaped and helped define the person you will become.  Don’t live a life of excuses and reasons why you never succeeded.  Live a life of overcoming and defying the odds…that life is so much more worthwhile.
~Future Me

Monday, April 9, 2012

HAWMC#9: Keep Calm


I have more than used my two get out of posting free cards.  My daughter had surgery and between caring for her and caring for my son on top of Easter weekend...I am exhausted, emotionally and phsyically. Seriously, I want to just crawl into a ball and disappear for a while.  Is there anyone out there?  Is anyone reading? I am truly curious, and it is hard to tell by the sheer lack of comments.  I LOVE feedback.  I try to leave it when I visit, won't you consider doing the same?

Todays prompt was to create a keep calm poster at this really neat site called:  Keep Calm-O-Matic.  I've seen these posters in a lot of places, esp. Pinterest.  And, since I am trying really hard not to dissolve into a ball of anti-social selfishness, I gave it a try.  WEGO asked us to create a poster that related to our condition.  Immediately these two things popped into my mind.  If I have these two things (and the means to dispense the insulin) in my posession, I have the means to keep my son alive.  Insulin to combat HIGH blood sugar and candy to combat LOW blood sugars.  I carry both of these things with me wherever I go.  Because I have learned, that D doesn't like to play fair and just when I think I have things figured out, it likes to completely change the game...and sometimes, D just likes to be completely irrational.  In all cases, I have to be calm so I can best figure out what to do for my son and we all know that panic is contagious and spreads like wildfire...so the best things I can do is:

Keep Calm
Carry Insulin
Carry Candy

And sometimes...SOMETIMES, I think Seth secretly likes to go low, so he can pop a couple packs of smarties in front of his sister...oh the sibling rivalry...and therefore my need to curl into a ball of anti-socialness.  Any ideas for combating THAT?

Saturday, April 7, 2012

HAWMC #7: Writers Choice


This is a fun site we have kids at school use to create a word cloud, it is called Wordle and you can use it a few different ways.  You can plug in your blog URL and it will pull random words and create a word cloud, or you can plug in your own words to create a word cloud.  That is what I chose to do.  I am a visual/graphic person, so it was kind of fun to puke out my D words and be able to see them represented in this manner.  Wordle=Cool.

~B

Friday, April 6, 2012

Insurance must love us

Our oldest daughter, Ashlyn, has been complaining of knee pain since last August.  We had an MRI done when she came home at Christmas, but our Ortho doctor was out of town and unable to see her before she had to return to Utah and then our life got crazy with Seth's diagnosis.  When Ashlyn met us in Florida for our trip, it was obvious that the knee was getting worse and that it needed to be addressed.  Since she is not attending school at this time, we advised her to come home a little earlier than she planned so we could get the knee looked at and decide what needed to be done.

Ashlyn got home last Sunday (yay):


She started her summer job on Monday.  They were able to start her a couple of weeks earlier than planned.  Tuesday we met with the doctor and learned that her kneecap does not slide easily between her thighbone and her calfbone.  It is a genetic thing that is very common in people who are tall and skinny.  She can work on strengthening her quad muscles to try and pull the knee cap more smoothly, but Ashlyn was weightlifting, running, swimming, playing volleyball and basketball when the knee was so painful that she could hardly walk.  The doctor further said that once she stopped strengthening the quad muscle the pain would immediately come back and increase, so we opted for the surgical procedure to release the ligament and allow the kneecap to move more smoothly.  Here's hoping this solves the issue for her.


Life became crazy this week getting ready for this and now caring for her.  We are ready for 2012 to cut us a little slack, medically speaking.  :)

On the pump front, we ordered Seth's pump on Thursday and are now waiting to see if insurance will approve it.  We are hopeful.

I hope everyone has a wonderful Easter weekend.  Our family is grateful for the sacrifice that was made on our behalf and for the gift that was given to us through Christ's Resurrection.  I love my savior and know that I would not be able to make this journey without him.

~B

Monday, April 2, 2012

HAWMC#3: Superpower Day



Today is day three and my writing prompt is:  Superpower Day.  What would it be and how would you use it?

I thought about this for a long time, I could have some fun with this.  But what kept coming back to me is...January 4, 2012 is the day I had to increase my Supermompowers.  January 4th is the day that we found out our sons body needed US to stand in for his pancreas.  It was that day that we were reminded what an incredible creation God has given us.  How perfect it is and how hard it is to recreate perfection.  I am "perfect pancreas" who struggles to achieve perfection.

What we have learned with D...is that we can do the same exact thing on two days and get two completely different results.  We have learned there is no rhyme or reason to what Seth's blood sugars do and it is hard for us to predict, though we keep on trying.  For example:

A couple of days ago Seth tested right before dinner and he was 347.  We gave him 4 units to correct 1 unit for every 50 he is over 150.  He was also going to have a 60 carb dinner.  Seth's carb ratio is 1:15, so we gave him 4 units for that.  A total of 8 units of insulin was administered.

2 hours later we tested and he was 187, he was coming down nicely, so I sent him to bed.  20 minutes later, Seth came down and said he felt low.  I suspected he was stalling on bed time, but he had rings under his eyes, one of his low signs, so I had him test.  He was 59...crap.  We gave him 15grams of carbs, which should have brought him up 50 points or so, and tested 30 minutes later...299...what the heck?!

We remind Seth to test 8-10 times a day.  We remind him to inject and figure out how much he needs to cover each time he eats.  We remind him to inject his long acting insulin before he goes to bed.  We carry a diabetes kit, as well as a back up kit with: meter, insulin and pen needle everywhere we go...cause sometimes the boy forgets his kit.  We go to the doctor once a month right now while Seth's needs fluctuate so much.  I carry my cell phone with me at all times so I can answer any questions the nurse may have or stand in  for the nurse if she is off for the day and principal from my sons school calls me to provide care for my son that day.  I get up at 3 am every day and check my sons blood to make sure he doesn't go to low in his sleep.  I have become the queen of diabetes out of necessity so that I can make my sons life as normal as possible.  It's a new normal, but we strive to make every day the most normal that we can.  That is my true superpower.  I think most mom's have it, they just don't realize it.

HAWMC#2: Inspirational Quote



Today's Health Activist's Writer's Month Challenge is to write about an inspirational quote.  I immediately hit Pinterest. If you click the picture above, you will see that I have a board of words that inspire me.  This is a quote that I recently found that inspires me.  When I googled the quote to find the author, I could find no attribution, just that it is an anonymous quote.

I used to have a really bad habit.  When things were crazy in my life or seemed out of control, as a way of getting through it, I would fixate on the next "good" event.  I would count it down and anxiously await it.  That would help me get through whatever moment of craziness I was experiencing.  And I had some pretty severe moments of craziness.  My health focus is Type 1 Diabetes.  But early in my marriage, I had undiagnosed Poly-Cystic Ovarian Disease and Bi-Polar and on top of that my husband worked out of town.  

He was only able to come home 1 weekend every other month during the winter months.  I had 3 children.  The oldest was 7 and Seth and Leah were babies, just 17 months apart.  The babies were actually born during this time after several years of infertility.  I was living day to day and it was not pretty at my house.  

Eventually I found an incredible doctor who listened to me and got me the help I needed.  I look back on that time now and realize that all of the moments that I fixated on to help get me through were good, but I don't have a great recollection of my babies and the significant moments in their lives.  They happened.  I was there and it was all documented (thank heavens for scrapbooks), but I was so focused on the other things to help me cope, that I don't have a lot of memories of them.

When I found this quote, it tugged at my heart.  This was my life, I was in the middle of a storm and I was just WAITING for it to pass.  Waiting and missing out on all the magical moments.  

Earlier this month, we took a long awaited and much planned trip to Walt Disney World.  I had dreamed of doing this since I was a little girl.  I could not wait to see Cinderella's Castle!  The morning arrived that we were to go to the Magic Kingdom and the girls and I got up and got ready, but when we opened the hotel room door we were met with ginormous raindrops.  The girls and I chose not to be discouraged.  We headed to the Magic Kingdom, viewed the castle through raindrops and bought Mickey ponchos.  I got to experience the pure joy of watching my girls skip through puddles and dance in the rain, it is a moment I will never forget.

We are choosing to dance in the rain and live our life.  Seth's diagnosis rocked our world, and there are days that are hard, but I wrote a blog post January 20th, about 2 weeks after his diagnosis that I think sums up our take on it:

I came across a diagnosis story today on a blog and this mom shared something that her daughters wise and kind nurse said to them their first evening in the hospital...after my pity post earlier, this quote really jumped out and empowered me:

"He told us that we were beginning a life long journey with diabetes and the sooner we made friends with it, the easier it would be because it is much easier to carry a friend than an enemy."

These words spoke to my heart.  I can't fight this, it's not going to change anything.  There is no cure.  There is only acceptance, after all, what is the alternative?  

So diabetes:  We didn't invite you into our family, but since you are here...we fully accept you in our lives so that we may live with you on OUR TERMS.  You will not hold us back or define us, you will just be another part of our story as we continue to live our extraordinary life. 

The Dustins
Living with T1D

I think my quote pretty much epitomizes that.  We are not waiting for the storm of T1D to pass, we are dancing in the rain!

Sunday, April 1, 2012

HAWMC #1: Diabetes Time Capsule


The year is 2111 and a 12 year old boy running through the woods, ahead of his parents, caught his foot on something and fell.  When he looked down to see what had caught his foot, he saw the corner of a metal box.  He waited for his parents to catch up and when they did, his father helped him dig the box out of the ground.  The family gathered around to read the engraving on the top of the box:  Time Capsule of a boy from 2012, do not open until 2112.  What was it, how did it get there, why was it there?  The family decided to take the box home and on New Years Day of 2112, they would open the box.

New Years Day 2112!  The day has arrived.  The family is excited to open the box.  That afternoon after the meal is cleared and the kitchen is cleaned, the family gathers around the box on the kitchen table and excitedly unscrews the lid.

On top is a picture of the boy who created the box:

And the same boy a few months later:


Seth, typed a letter to the finder of his time capsule:

My name is Seth, and I have Type 1 Diabetes. My favorite color is red.  My favorite dinner is caribou steak with mashed potatoes, gravy and corn.  My favorite desert is a hot fudge brownie desert.  I love to play with Lego's and my favorite video game is Skyrim.

About my Diabetes:  Type 1 Diabetes is an auto-immune disorder that allowed my body to attack my pancreas, so it no longer produces insulin.  Here is the story of how I was diagnosed.  (The diagnosis story would be enclosed, but here it is for anyone who is interested:  Diagnosis Part 1, Diagnosis Part 2)

This is a REPORT I did in 6th grade about Diabetes.

Next is a light blue t-shirt with a dark blue circle on the front.  Attached is a note that says, Everyone in my family wears a shirt like this on World Diabetes Day.  This day is November 14.  Do you still have a World Diabetes Day?  My mom wears blue shoes because she is part of the blue heel society.  The blue shoes attract attention and when people ask questions then she can educate people about Diabetes.  She does as much as she can because she doesn't like people thinking that my diabetes was caused by my diet or exercise.

The next item the family removes from the box is a Kevlar packet.  Inside is a One-Touch Blood Gucometer, a vial of test strips, a lancing device, a baggie of lancets, some alcohol pads, some glucose tablets and a packet of almond buter.  A note attached reads:  I never leave the house without this.  With this I prick my finger 8-10 times a day to test my blood and see what my blood sugar level is at.    If it is above 150, I have to give myself insulin to bring the level down, if I am below 80 I have to eat 3 glucose tablets and re-check my blood in 15-30 minutes.  If my number is coming back up then I eat the packet of almond butter to help stabilize my blood sugar.  My mom even checks me at 3:00 am every day, because sometimes  diabetics go too low in their sleep and they don't wake up, it is a syndrome called Dead In Bed Syndrome.

Also in the box are two pens of insulin.

When I first came home from the hospital this is what I used to treat my Type 1 Diabetes.  This is Humalog, it is a rapid acting insulin that I use whenever I eat:

I put a pen needle on the end and inject one unit of insulin into my stomach or thigh  for every 15 grams of carbohydrates I eat.  This is called my Bolus Insulin.

This is Lantus:

Lantus is my long acting Insulin, called my Basal Insulin.  I take it once a day, at night before I go to bed.  It burns when I inject it because it crystallizes under my skin so that it can release over the next 24 hours.  This creates a baseline of insulin that would keep my Blood Sugar steady if I did not eat anything during that 24 hour period.

There were logs of numbers for Seth's Blood Sugars, the family had no idea what that meant, but his numbers were sometimes low 50 and sometimes high 450 and all places in between.

Lastly, there was a toy made from plastic bricks:

These are Lego's my favorite toy.  I like to use my imagination and create things.  Are there still Lego's in 2112?

When the family got done looking at everything in the box, they talked about what a brave boy Seth was and they decided to research what diabetes looked like in 2112...what do YOU think they found?