Tag Archives: T1D

Memories

This month marks 8 years since diagnosis. It’s hard to remember life before diagnosis.

What isn’t hard to remember is her diagnosis story. That day and night are etched into my mind. The memories of the triage nurse trelling me that there was no reason for a urinalysis when I requested it, the doctor asking me if I knew what diabetes was and informing me that she had a lot of glucose spilling into her urine, ride in the ambulance for 1.5 hours, the paramedic who gave her a stuffed animal on the way to Children’s Hospital, the multiple times they tried to start an iv and failed, the lack of sleep I had that night because nurses were constantly in to check her, the education mandatory education classes for newly diagnosed patients and family, the pain & heartache of staying at the hospital with one very sick child and leaving the other two, and so much more.
Those are the memories I have from 8 years ago. I don’t remember much of life without needles, blood and carbs.

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 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 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?!?!

High with a Chance of Ketones

Tonight my dear daughter’s pump site became disconnected. Now I don’t know how it happened or even when it happened. But it did happen.

Her blood sugar was high when I put her to bed, I gave her a correction thinking that maybe I didn’t calculate carbohydrates correctly for dinner.

Then two hours later, I recheck her blood sugar again to make sure it is coming down. Instead, her glucose meter greeted me with HIGH GLUCOSE OVER 600! So I roll her sleeping body over to find her pump site no longer attached to her little body.

I don’t know how long she was without any insulin, but I do know that when the words HIGH pop up on the glucose meter that there is always a chance of ketones. So I got her pump ready to go, got a new pump site on her body and the pump going again with a massive correction. Then I checked her ketones. Yep, they are present. It will be a long night.

 

2014 JDRF Walk to Cure Diabetes Family Fundraising Letter

It’s hard to believe that February 22, 2014 will be our 6th year walking at the JDRF Walk to Cure Diabetes. It will be our 5th year of having our own family team.  On November 23rd, we celebrated my 5th year of living with Type 1 Diabetes.

Last year, at the walk, I was one of the “Thank You” Kids. I went up on the stage in front of thousands of people to help hold up letters that spell out THANK YOU when the total amount raised for the walk was announced. I was scared and excited to have the honor to participate.

THANK YOU FOR ALL OF YOUR SUPPORT!

THANK YOU FOR ALL OF YOUR SUPPORT!

Over the past year, I participated in many activities. I am a member of the 4H program in my county. For the past 3 county fairs I have done a project on Type 1 Diabetes. I hope that my projects will help educate others about this autoimmune disease that affects millions of people.

I played volleyball and softball through the community ed program at school. I participated in the Girl Scouts swim team for the second year.  I participated in two 5K runs this past summer and plan to participate in more. Every day I show the world that no matter what diabetes throws my way, I WON’T let it stop me from doing what I love.  I love to attend diabetes camp; it is my “home away from home for one week!”

I wear an insulin pump and a continuous glucose monitoring(CGM) system. Sometimes I feel like a robot or cyborg, with everything that is attached to my body. I poke my fingers to check my blood sugar approximately 10 times a day. My insulin pump site is changed every 2-3 days, and my CGM site is changed once a week. When I sleep my mom makes sure that I stay safe. She checks my blood sugar and gives me sugar when my blood sugar is too low, and gives me insulin if my blood sugar is too high.

I enjoy raising money for JDRF, to help find a cure for diabetes. JDRF is the largest charitable supporter of T1D research; JDRF is currently sponsoring $530 million in scientific research in 17 countries. In 2012, JDRF provided more than $110 million to T1D research. In 2012, Forbes magazine named JDRF one of its five All-Star charities, citing the organization’s efficiency and effectiveness.

JDRF was created, and is still led by people with a personal connection to T1D. Whether it’s providing funding for a late-stage clinical trial, advocating faster regulatory approval of new devices, or partnering with a company on research that might not otherwise receive funding, every decision JDRF makes is driven by their commitment to achieving a world without T1D. We are proud to be part of the JDRF team, where we are working with them to turn Type One into Type NONE!

I am also doing what I can to help find a cure, by participating in different research trials with T1D Exchange. I dream of saying, “I once had Type 1 Diabetes” and being able to say thanks to all the amazing people, like YOU, who helped in finding a cure! We have started our fundraising campaign for 2014, with a goal of raising $3000 as a family, and $6000 as a family team this year. If you would like to join my team, please go here to register as a member of my team. If you can’t be with me on walk day, you can register to be a virtual walker and walk where you live. I hope you will join my team and help me meet my fundraising goal this year.

Please help us reach our goal and help find a cure for Type 1 Diabetes.  Your donation is tax-deductible. You can support us online here or you can make a donation in person or by mail. We look forward to seeing your name on our list of friends helping to find a cure! Help make Type One into Type NONE! We can’t do it without YOU!

Dreaming of a Cure

Countdown to the JDRF Walk to Cure Diabetes 2014

82 days until our JDRF Walk to Cure Diabetes 2014!

We have a lot of fundraising to do over the next 82 days! Our family team is going to shoot for raising $6,000. A few fundraising ideas we have so far:               

 

Sneakers with messages of support  from classmates.

Sneakers with messages of support from classmates.

  • We will be selling scarves, boas, jewelry.
  • We will be putting out change buckets again.
  • We will be putting out JDRF sneakers again.
  • We are hoping that the school will allow us to do a fundraiser of sneakers through the whole school. As well as my daughter wants to do a change challenge like she did last year between her pod of classrooms.
  • We will be mailing out our family walk letter and asking our family and friends to help us in raising money to help in finding a cure.
  • We need to recruit more people to register for our walk team, the more people we have helping raise money means that each person has less to raise to meet the team goal that has been set.

We will be blogging about our countdown to the walk, and what we are doing. We will also be blogging about what the walk means to each of us. We hope to get a few guest bloggers as well. So if you are a family member or friend who has been with us for these walks, we might ask for you to write something up for us to post on here.

Diabetes Month Photo a Day – Day 30

Day 30: Future

Diabetes awareness month has come to an end today, but we will always help bring awareness so that others understand type 1 diabetes.

While we dream for and hope for a cure for type 1 diabetes in our future, we know that it is a long and windy road. Along the way we will stumble and fall many times, yet we will get back up and carry on. Every day we will do this. Until there is a cure.

The future for a person with diabetes is long and uncertain.

The future for a person with diabetes is long and uncertain.

Another dream for the future is the career my daughter wants to pursue. She wants to be a veterinarian or a veterinary tech. She loves animals and wants to work with them.

A future helping animals.

A future helping animals.