Halloween

Halloween then and now

Six years ago, as we prepared for Halloween, Little Miss was 6 years old, and we had no idea of the war that raged inside her body. She dressed as a clown, went out, and had fun, without a care in the world.

Halloween marks the beginning of her diabetes “anniversary”, and this year marks the point of diabetes having been with her for half of her life. From now on, she will have lived longer with diabetes than without. This year, however, has been an eerie reminder of the season six years ago. Halloween fell on a Friday again for the first time in six years, her diagnosis date will fall on a Sunday again, and Thanksgiving marks the day she came home from the hospital, and we started a new chapter in her life.

Fast forward six years. This Halloween, we have to carry around a bunch of diabetes supplies, and we have to think about how active she will be, and how many carbs are in the candy she eats. Her favorite saying has become this: “Diabetes can’t and won’t stop me from doing the things I love.”

She still wants to dress like a clown though, and she still has fun on Halloween. Some times, a lot can change in six years. Some times, hardly anything changes at all.

Missing!

Today we lost a member of our family. This member joined us November 2008. He’s always been with us. Tagging along, everywhere. A little brother. An annoying little brother. One you wish would never had come along, that didn’t have to tag along. He was a vampire, a blood sucker. A glucose meter. He never had a name.

While we were hiking for 2.5 hours, he let go and wandered away. We looked after we realized he was missing. But alas, we couldn’t find him. We are thankful we had his younger sibling along to help once we realized he was missing.

 His twin, out in three open for all to see.

His twin, out in the open for all to see.

 His twin, in disguise.
His twin, in disguise.

Have you seen him laying around? We were grateful for the years he was with us. Through the highs and lows life threw our way.  He will be missed, greatly. Thanks for your time!

Farewell glucose meter!

 

DBlogWeek Day 7: My Favorite Things

As I thought about this topic today while we walked our second JDRF walk this year, I had Julie Andrews singing in my head about a few of her favorite things:

Raindrops on roses and whiskers on kittens

Cream colored ponies and crisp apple strudels

Snowflakes that stay on my nose and eyelashes

Silver white winters that melt into springs

These are a few of my favorite things

When I’m feeling sad
I simply remember my favorite things
And then I don’t feel so bad

Watching these little ones perform at the end of the JDRF walk today was priceless. They made the crowd smile.

Watching these little ones perform at the end of the JDRF walk today was priceless. They made the crowd smile.

As you can tell, a lot of music seems to pop into my head, a lot! Diabetes isn’t the worst thing that could ever happen, but it’s far from my favorite. This topic is supposed to be about looking back at the week of blogging, and what the favorite part of the week was.

One of my favorite memories of this past week is that I actually completed the full week of blogging! I tried for the first time last year, and I failed at doing it every day. It takes a lot of commitment to blog everyday about a predetermined topic. I am proud of myself for doing it this year! And I look forward to next year.

Another of my favorite things about this past week is having a new person comment not once but twice on a blog. My favorite being the comment on Day 4. I never really expected people other than family and friends to actually read the blog. So it is really cool that someone new has decided to read and comment. Thank you Kelley for stopping by and showing some love to a new blogger. You made me smile and you made my week!

 

DBlogWeek Day 6: Saturday Snapshots

Diabetes is a roller coaster ride, with an unwilling rider.

Diabetes is a roller coaster ride, with an unwilling rider.

 

Just one of the many times a day that I check my blood sugar. I check my blood sugar 10+ times a day.

Just one of the many times a day that I check my blood sugar. I check my blood sugar 10+ times a day.

 

 

If my pancreas worked properly, I wouldn't need help to know when my blood sugar is low.

If my pancreas worked properly, I wouldn’t need help to know when my blood sugar is low.

I don't always wear a knight's helmet when I fight my battles, but sometimes I feel that I should. I am always at battle with diabetes. Trying to control something that doesn't want to be controlled.

I don’t always wear a knights’ helmet when I fight my battles, but sometimes I feel I should. I am always at battle with diabetes. Trying to control something that doesn’t want to be controlled.

 

If only I could be like Dorothy and click my heels together and say "there's no place like home" and be free from diabetes.

If only I could be like Dorothy and click my heels together and say “there’s no place like home” and be free from diabetes.

 

DBlogWeek Day 5: Diabetes Life Hacks

Note:I am not a trained professional, this is not medical advice. If you are seeking medical advice please contact your endocrinologist.

When we left the hospital way back in 2008 on Thanksgiving Day, I tried to figure out the best way to remember the date that insulin bottles were opened on our two hour drive home. Once we got home, I went digging in the junk drawer and found my garage sale price stickers. They were pink, yellow and green circles. They fit perfectly on the bottom of an insulin vial. So the day I would start using a new insulin vial, I would write the date on the sticker and stick it on the bottom of the vial.

We started noticing that 14 days into a vial of insulin that Little Miss’s blood sugars would decide to jump sky high. Is she sick, is something wrong with the pump, is the site bad? So many questions! No matter what we did, those stubborn blood sugars wouldn’t come down. Pump cartridge changes, site changes, increased insulin (with syringe and through pump) we did it all. After 3 days of fighting highs and doing everything I could think of, I grabbed a new vial of insulin. Within 2 hours of new insulin in a new cartridge and a new pump site and the blood sugars were coming down. Another 14 days into this vial (which I made sure we were kept in the fridge, just in case that was the issue) and we ran into the same issue. I called up the CDE and we got started on using insulin pen vials. We haven’t run into this issue since. This is one of the best insulin management things we have ever done.

Little Miss learned at diabetes camp that 1 serving of chips is 1 adult handful or 2 child sized handfuls. She still uses that for measuring chips when we go to family functions and potlucks. It has been one of the best things for her to be able to figure out.

We have black sharpie marker lines on cups in our house that mark the 4 oz and the 8 oz measurements. These lines work better than measuring cups for kids. She is able to get herself drinks and know how much she is actually having.

Juice boxes, how did I ever live without so many juice boxes?!? We stock up on 2 difference sizes one has 15 grams carbs and the other has 24 grams carbs. They are used mostly for overnight lows. It’s amazing how I can put a juice box straw up to her lips and she will suck that thing down super fast sucking the box in on its self.

DBlogWeek Day 4: Mantras and More

A mantra is defined as:

  1. a sound, word, or phrase that is repeated by someone who is praying or meditating
  2. a word or phrase that is repeated often or that expresses someone’s basic beliefs

When my daughter was diagnosed with type 1 diabetes and long before I ever knew that the D.O.C. existed or that there were blogs about type 1 diabetes there were a few of these mantra’s that we would mention. After I found the D.O.C. a few years into this journey, I found that a few others have also used them as their mantra’s. However, right now, I can only think of the following one.

One of my favorites since starting this journey with Little Miss is, “It never gets easier, you just get better!” I’ve since found out that it is part of Stick With It Sugar’s name. Maybe even the catch phrase or mantra over there.

We also use catch phrases/mantras like:

  1. You’ve got this! / You can do it!
  2. Never give up!
  3. Diabetes won’t stop you!
  4. Give it all you’ve got!
  5. Hakuna Matata! A great mantra from Lion King! :)

Little Miss also likes the phrase “Peace, Love and Diabetes!” She learned that one at camp and has a t-shirt with that saying on it.

We tend to break into song quite often in our family. And sometimes we turn the song into something powerful like we did for our walk video to Katy Perry’s “Roar!” – we did a parody and called it Cure!. Sometimes it just something off the wall and silly like the hit song of “What does the fox say?” we have started singing “What does the Dex say?” and putting the beeps for the alerts (high, low, fall, rise, calibrate and out of range) into it.

Sometimes, it’s the silly stuff that helps get you through the hard times. Looking back at where we’ve been and how far we’ve come are always reminders of the strength you have when you feel like it’s you against the world. Finding something positive in what you are struggling with, doesn’t make things easier or better, but it does help you push forward.

DBlogWeek Day 3: What Brings Me Down

Starting this blog off singing the song we wrote for our walk video this past February.

It brings me down, but I get up! Yeah!!! It’s never gonna make me stop!

Dealing with a chronic disease every day and every night takes its toll on a person.

It’s not just the  blood sugar numbers, yeah that’s a big part  of diabetes but it’s not the only part.

There’s a lot of math involved as well:Counting, adding, subtracting, dividing  of carbohydrates, fiber, activity, adjustment of blood sugar all just to figure out how much insulin is needed!

Then let’s remember to figure in emotions and other external  stresses! They affect  everything way more than you would possibly know! Pet beta dies,  blood sugar hitches a ride on a spaceship with a destination of too HIGH! And it doesn’t want to come down anytime soon.

I never know if my daughter’s attitudes and behaviors ate from high or low blood sugars, or just her acting out.

Add all of this into the sleep equation and life takes on a new meaning! It’s like having a newborn baby, that never grows up!

I’m thankful that when I’m feeling the big d burnout, I’ve got a lot of great friends who are always willing to listen. The pwd’s, d-mamas & papas in this club are some of the most amazing and down to earth people I’ve ever  had a chance to meet. They’ve all been there, they all know what it feels like and they might even offer suggestions.  There are so many resources out there of you’re looking for them. Books, vlogs, blogs, podcasts just look around and you’ll find something!

JDRF has been an amazing resource for us as well. They are willing to help you find someone to talk with if you need it. One of the first diabetes connections I made was through their mentor program.

 

DBlogWeek Day 1: Change the World

It’s DBlogWeek. And the topic for day 1 is Change the World. Does anyone else hear Eric Clapton’s song “Change the World” playing in their head?

We do our part to ‘change the world’ by helping to dispel myths about all things T1D.

We hope that eventually people will understand that T1D isn’t caused from eating candy or drinking pop. It isn’t caused from too little or too much exercise. There is NO CURE for T1D.

Having a pump doesn’t mean that your diabetes is automatically in control. Having a pump doesn’t mean that you never have a low or high blood sugar. Having a pump means less shots of insulin.

Checking your blood sugar, giving insulin injections, putting in an insulin pump site or a CGM sensor aren’t fun, and they can hurt. You never get use to them, no matter how long you do it.

T1D isn’t a one size fits all disease. Just because it works for one person, doesn’t mean it will work for everyone else.

We will continue to work on dispelling myths about T1D, in hopes that someday people will not believe the myths.

This past year we participated in the Spare a Rose, Save a Life campaign around Valentine’s Day. We spared roses and helped supply life saving insulin for a child. Over $27K was collected and 454 children’s lives were saved for a full year! How amazing is that?!?!

Classroom Treats and Birthdays

Celebrating birthdays don’t just happen at home or out with family and friends but also at school. This past weekend we celebrated turning 12. We went bowling with family and friends. We had delicious cupcakes. We dealt with low blood sugars. But we had an amazing time celebrating.

When the weekend was coming to an end we had to figure out what to take for the classroom treat. Classroom treats have to be store bought and if possible individually wrapped. Not to hard or a choice, right? Most of the kids take cupcakes or brownies. Something full of sugar.

My daughter was concerned about a few of her classmates. She has one classmate with celiac – so she can’t have wheat and gluten. She also has a classmate that has a nut allergy.This makes things more difficult. Other kids bring things that are full of gluten and the one girl never gets to have the treat that is brought.

I think that having diabetes has made my daughter more compassionate to others around her. My daughter has had her share of being left out of snacks and classroom treats because of there being no nutritional information and not having someone around to help figure out how many carbohydrates and therefore how much insulin she needed. She didn’t like seeing her classmates and friends go through the same things.

So after questioning a few different people we know who have food allergies to find a good snack that she could take to school for her birthday treat, we decided on individual bags of baby carrots and mini boxes of raisins.

Healthy and all natural  treat.

Healthy and all natural treat.

They are naturally gluten free, nut free and healthy! She was worried that kids wouldn’t like the snack and that they would make fun of her choice for a treat. After school I asked how the treat went over and she told me that everyone loved her choice.

Showing birthday treats for the classroom.

Showing birthday treats for the classroom.

Healthy and natural treats are always good, no matter what the age or occasion. I wish more parents would send healthy treats to school.