Wednesday, April 18, 2018

The Instagram Page That Is Showing The World What People With Type 1 Diabetes Are Really Made Of

If you’re involved in the Diabetes community, you’re probably aware of Beyond Type 1. But for those who aren’t, Beyond Type 1 is a non-profit organization raising funds, awareness, and education for Type 1 Diabetes.

What made them so well known? Well, it doesn’t hurt that Nick Jonas is one of the co-founders. But the real reason is their incredible Instagram. Every day we’re introduced to a new person with diabetes from all around the world, and they tell us how they are living beyond their diagnosis.

When I discovered their page, I was awe inspired. I went through almost every picture, reading about amazing things people are doing with Type 1 Diabetes. It is truly a wall of warriors, from toddlers to people who have lived with T1D for over 40 years.

There are many incredible things Beyond Type 1 does for the community, and this post is just touching the tip of the iceberg. But it was the first thing that introduced Beyond Type 1 to me, and it’s a great place to start and start to understand their message.

If you have Instagram, I highly recommend following them at @beyondtype1. If you don’t have Instagram, I highly recommend making an account, and checking them out. It is a beautiful community and a daily source of inspiration.

Below are some of my personal favorite pictures from their wall.

To submit your story and photo, click here!

Monday, April 9, 2018

A Lesson in T1D Lingo

Those of us with Type 1 Diabetes have kind of created our own language along the way. This language includes many words or expressions that people outside the community would raise their eyebrow at. This is a little dictionary of some things you might hear us say or see us write.  

Unicorn: When your blood sugar is 100 mg/dL (5.5 mmol/L). We call these unicorns because it’s a pretty magical level to be at. An all in all great number, and when we catch them, it’s exciting. 

Bolus: The insulin you give yourself prior to a meal, or as a correction if your blood sugar is too high. 
Basal: This is the dose that keeps your blood sugar at a good level between meals and while you’re sleeping, always working in the background. 

DOC: Stands for Diabetes Online Community. 

Pumper: Someone who receives their insulin by using an insulin pump. 

MDI: Multiple daily injections. This is what non-pumpers do. 

Diabestie: This is what you call one of your best friends who also has diabetes. I love my diabesties. 

Diaversary: This is the anniversary of the diagnosis date of a Type 1. Why would we celebrate the day we were diagnosed with a life-changing disease? Because we’re celebrating all the hard work we’ve put into keeping ourselves alive every day all year. 

Rage Bolus: Sometimes we do something that we regret later. And that thing is a rage bolus. Which is when you can’t wait the recommended time to let your insulin work, so you end up giving excessive amounts until you see your blood sugar coming down, in a rage. 

“Feeling high”: You’ll probably hear a Type 1 say that they feel high, or that they are high. You might even hear a parent of a Type 1 kid say that their kid is high. We want you to know, this does not mean what it sounds like. It means our blood sugar is high. Which is why someone coined the clever term “I shoot up to avoid getting high”. Giving ourselves insulin will bring it down. 

Honeymoon: At the beginning of a diabetes diagnosis, there is usually a period called a “honeymoon” phase. It’s when our pancreas’ are still working a tiny bit, so we don’t need as much insulin. 

Diabetic Hangover: How you feel after a long, sleepless night of trying to get high and low blood sugars under control. Exhausted, grumpy, and crappy. 

Pricker: This is what we call a lancing device. Because who has time to say ‘lancing device’?  That sounds too fancy. It’s the little tool we use to poke our fingers with to test our blood sugar. Synonyms include ‘poker’, ‘lancer’, etc.

BS: This isn’t the type of BS you’re thinking of. Although sometimes we feel like dealing with our BS is BS. BS in diabetes talk stands for blood sugar. Also known as BG, which stands for blood glucose and means the same thing. 

I hope this clears some things up for the people around us! Until then... we'll keep feeling high until we can get our BS down and hopefully we catch some unicorns.

Monday, April 2, 2018

April T1D Faces of The Month

Even though ambitious 7-year-old Hayden is only one year into his Type 1 diagnosis, him and his family are already making waves in the community.Right before his 6th birthday, mom Jenn took Hayden to the doctor because he was acting extremely irritable and angry, he was having to pee more than 10 times a night, and he was guzzling water like it was nobody’s business. When they got to the doctor, they had him do a urine test, and Jenn thought they were testing for a UTI. The doctor came back and did a finger prick and the meter read HI. He took Jenn into the hall and told her that Hayden had Type 1 Diabetes and needed urgent treatment. Only a year into Hayden’s diagnosis, Hayden’s family started a company called Greater Than.  They are a lifestyle apparel brand who donate a portion of their proceeds to T1D research. They’ve had booths at Type One Nation summits, ADA walks, Padre Foundation events, and JDRF fundraisers, raising money for each. A portion of their proceeds also goes to Type 1 research at Dr Faustman’s labs in Boston, Massachusettes. Hayden just started using an Omnipod, and he’s loving not having to be poked multiple times a day to give his insulin. Jenn also thinks it’s given them better control over his blood sugars.Hayden has a whole crew of loyal supporters! These include his mom, Jenn, and stepfather Steven, his biological father and his fiancĂ©e, and Jenn’s parents who they’re grateful live nearby. Also can’t forget a whole zoo of pets! Hayden says, “Type 1 Diabetes doesn’t stop me from doing anything that I want to do. I can still play my video games, swim, run 5ks and eat ice cream. I’m still Hayden.”

44-year-old Lynette, from Maine, was only 6 when she was diagnosed with Type 1. She was sick with bronchitis, and wasn’t getting any better. She was losing weight, wasn’t eating, and was drinking and urinating a lot. She was in kindergarten at the time, and her parents brought her to the pediatricians. Before she knew it she was in the ER having blood drawn and being loaded with insulin. Her blood sugar was almost at 700 mg/dl. Lynette just celebrated her 38th diaversary on February 14, 2018. In the past few years she has started doing the JDRF One Walk, and loves the sense of community and unity she gets when she’s there surrounded by other Type 1 families. She’s been using an insulin pump for 10 years, and just recently started using the Medtronic 670g pump and CGM closed loop system. When asked about her biggest supporters, she said, “Hands down my husband Rob.” She continued, “I can't even begin to count how many times in 18 years of marriage that man has been woken up in the night by a cgm alarm or me asking for juice to treat a low. He's the best!” Lynette says that T1D doesn’t stop her from living her best life now. She elaborates, “Yes, I'm a diabetic but that's just a part of what makes me, me. I'm also a wife, a mom, I have a close knit family, amazing friends, a great career. There are good days and bad days, and I have learned not to beat myself up about a bad day. Even after 38 years there's trial and error in this T1D life and if I've learned anything it's this; I can choose to be in control my diabetes or it can be in control of me. It's a balancing act but I will not let diabetes win.”

15-year-old Macey was diagnosed with Type 1 Diabetes at 13 months old. She’s really lived most of her life with it! She received the MMR vaccine, and two days later came the excessive thirst and peeing. At the time, her parents were in contact with her doctor who misdiagnosed her, saying it was a reaction to the vaccine. Well, a week later she was lethargic and close to a diabetic coma! She was in the ICU for 4 days as her parents were taught how to take care of her. They started Macey’s Believers as a walk team to raise money for JDRF, and have raised over $170,000.00! Now Macey’s Believers has grown into a non-profit, raising money for research, and to help families with who can’t afford to attend the Friends For Life Confetence by Children With Diabetes in Orlando every year. They’ve been attending the conference since 2005, and Macey says it’s the best! She is grateful for her friends and family who are always there for her. Macey says, “A positive that has come out of T1D is that I appreciate every day!”

22 year old Hunter, from Florida, was 6 when she was diagnosed with Type 1. She was a little gymnast, and her parents recognized the classic symptoms very quickly. Because she was a gymnast the time, she was burning off a lot of the glucose in her workouts so the symptoms weren’t very noticeable until her body couldn’t handle it anymore. Her parents took her to the pediatrician, and luckily he was familiar with Type 1 and knew to test her blood sugar, which was 400. She spent the next 4 days in the ICU. Hunter has been attending and volunteering at the Friends for Life by Children With Diabetes conference since 2003. She also does JDRF fundraisers, and did the Walk to Cure Diabetes Children’s Congress in 2009, where she and some other Type 1 kids got to meet former President Obama, Nick Jonas, and Mary Tyler Moore. She is supported by being on the Open APS Loop System with her pump and CGM, but is also supported by Abby and Sadie, who are both trained service dogs! Her biggest supporters are also her mom and her dad.  Hunter says, “A positive that has come out of T1D is the people it has introduced me to! Because of diabetes, I have these incredible people in my life  - an extended family - who are all there for me no matter what, and I can’t be anymore thankful for them.”

11-year-old Hannah was diagnosed with Type 1 Diabetes 4 years ago. She was sick for a few days, and her doctor did a blood test which revealed a high blood sugar. Now she uses an Omnipod insulin pump. Hannah led and organized a JDRF kids walk at her school, raising over 5000$! She is a youth ambassador for her JDRF chapter. But her favorite diabetes-related activity is the Friends for Life conference by Children With Diabetes that is organized every summer. Her biggest supporters are her family and friends, and her 3 pets; two dogs named Jasmine and Joe (aka “Joe Bear”), and a cat named Molly. Hannah says, “T1D doesn't stop me from doing the things I love. I love art and theater and noone can stop me from doing those things!”