I have really been slacking off in blogging. Unfortunately, diabetes doesn’t slack off. Ever.
I reached my four year diaversary in July without much fuss. I just didn’t have the energy to “celebrate” this year like I have in years past.
I think I’m dealing with a bit of diabetes burnout. My numbers are still okay, I’m just feeling more.. Blah about the whole process. I’m not nearly as excited to educate others here recently. That’s a weird realization and an uncomfortable thing to be saying [writing], considering that is my entire platform on this blog. But I think we all go through ups and downs and phases. I know I wasn’t always a super vocal advocate so I suppose it would be normal to go through a period of time where I tone down the advocacy a bit.
Not that I’m any less passionate about the subject. Just less vocal, for now.
We’ve been very busy on the photography side of the house this summer and it will continue well into the fall as well.
I’m not ready for summer to end. I’ve been involved in a lot of other activities this summer, including a dodgeball tournament for my work, playing LOTS of Pokemon Go (and even dressing the part), making new friends, hitting up the beach and getting some horrific tan lines, getting my hair colored for the first time in 8 years, and preparing to be part of a pilot program for telecommuting for my work.
So overall, I’m happier than I’ve been in a long time. I have some of the most amazing friends on the planet. I’m enjoying life and of course not letting diabetes ruin any experience for me, even the beach.
I’ve been mulling on this blog post since last Friday. Eight entire days, I’ve been debating writing what I’m really thinking, no holds barred. It’s been keeping me awake at night, niggling in the back of my mind, gnawing at my every thought. And I finally decided that I need to write this blog post for one reason: I started this blog to raise awareness, whether that be general type 1 awareness for strangers or helping people I know personally be more aware of their actions and judgments.
So here goes.
Diabetes is my best friend.
It is also my worst enemy.
This week has been a crazy one for the Diabetic Online Community. First we went through Crossfit’s attack on diabetics and the overwhelming response from the DOC that went largely ignored. Then we received good news in the form of the iLet dual-chamber Artificial Pancreas being announced at the Friends for Life 2015 conference. But today we took another devastating blow as Kycie Jai Terry passed away unexpectedly early this morning.
Kycie’s story started on a Monday in January with this precious five year old complaining of a tummy ache. Doctors said she had the flu and sent her home. By Friday, she was having seizures and being life-flighted with a correct diagnosis – Type 1 Diabetes.
Kycie suffered extensive brain damage but at every turn, she beat the odds and floored everyone’s expectations. Earlier this week, she was in the hospital but she was released earlier than expected due to the fact that she was recovering so well. It was an absolute shock this morning to see that she had passed away.
Through Kycie’s [mis]diagnosis, her parents via the Kisses for Kycie Facebook page were able to reach thousands of people with Kycie’s story and at last count, more than 20 children were correctly diagnosed with T1D directly from seeing posts from Kycie’s page.
I didn’t know Kycie personally, but seeing this brave warrior lose her fight hits close to home. As a victim of misdiagnosis myself that resulted in five months of physical, emotional, and psychological suffering, I feel connected to the Terry’s and their cause. All it takes is one finger poke. That $1 test can make all the difference.
This is why I advocate. This is why I won’t be silent about this disease and everything it entails. Kycie could have been correctly diagnosed with Type 1 Diabetes on Wednesday when her mom took her to the doctor, rather than between seizures on Friday in the ER. She could have been a lovely, thriving five year old with a sub-par pancreas. Instead, she’s an angel now.
Please, know the symptoms. Request a finger poke.
Fly high, sweet girl.
About two weeks ago, I had the lowest blood sugar reading I’ve ever had, in the middle of the night. It was scary of course, but my husband had it under control and we survived. I posted a photo of my meter showing the number on my twitter and expressing my thankfulness for being alive. I then received a tweet in reply to it from a guy named Tony who is an ambulance driver. Tony and I proceeded to get into a heated argument over several hours which got multiple others from the diabetic online community involved. It was nasty, it was ugly, it was awful.
It all stemmed from the fact that I said that one point lower was our “call the ambulance” number.
Take a moment and clear your mind. Forget EVERYTHING you know or think you know about diabetes. Ready? Let’s go.
Filed under FAQ, Real life
Today the Diabetic Online Community and the Food and Drug Administration came together and had open discussions about diabetes care, daily life, struggles, shortfalls, and hope.
Why is this a big deal worth blogging about?
Because this meeting is unprecedented. The FDA has always been viewed by many as a cumbersome, slow-moving, necessary evil of diabetic life. The fact that the FDA was so willing and open to meeting with key members of the diabetic community is incredible.