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12 Things I’ve Learned In My 12 Years With Diabetes.

Twelve years ago today, I was diagnosed with Type 1 diabetes. For me, as someone who was (and still is) afraid of needles and blood, it was my worst nightmare. But since then I’ve learned a lot and have grown in ways I couldn’t have imagined. And today I’m going to share with you the 12 biggest lessons I’ve learned since I was diagnosed. 

1. Always bring your own drinks.

One of the worst feelings is going to a party and there not being any diet soda. Not that drinking water is the end of the world, but there is something to be said when the host has bought 7 different types of soda for the guests, but not one is diet. So I’ve learned to just bring my own whenever I go somewhere.

2. Diabetes tech is always changing.

When I was diagnosed, having a pump that could calculate your meal bolused was a big deal (RIP Deltec Cosmo, you will never be forgotten), and CGMs were only in their infancy. Now we are in a world with closed-loop systems and apps for sharing sensors data. Who knows where we will be in another 10 years.

3. Your diabetes may vary.

Just because you and I may both have Type 1, doesn’t mean our treatment will be the same. For example, you may need far less insulin to maintain your target blood sugars, while I may need a lot more. Or Chinese food may make your blood sugars skyrocket, but barely affect me. Diabetes is a unique experience for every person who has it, 

4. You aren’t your numbers.

For the longest time, I was told that if I had a bad day with high blood sugars, it meant I was a bad diabetic and that I was doing something wrong. That mindset really messed with my mind and caused a lot of mental health issues. I’ve since learned that sometimes I will have a bad day, and sometimes I will make mistakes with my care, but that it doesn’t mean I’m a bad person or that I’m a bad diabetic. My numbers are not a reflection of who I am, and your numbers aren’t a reflection of who you are.

5. Complications are always on the table.

Despite what you may have been told, complications from diabetes aren’t directly linked to how close to target your numbers are. You could have perfect numbers your whole life and still need a kidney transplant, or you could have high blood sugars all the time and have no problems. There is no formula out there that will tell you if you’ll get complications or which ones you will get. If there were, I think diabetes would be less stressful.

6. Anything and everything affects diabetes.

You could eat the same thing at the same time in the same conditions for two days in a row and get wildly different blood sugars. The strangest things can affect how our body reacts and will change the way our numbers are. I’ve learned to never take anything for granted when my blood sugars are good, because all it will take is the wind blowing the right way and everything will change.

7. Doctors aren’t always right.

As much as we want to trust our Endocrinologists one hundred percent when it comes to our diabetes care, they aren’t the ones who are living with it. And even the Endos that have Type 1 have different reactions than we do (see number 3). Now I’m not saying that we need to ignore our doctors or that we automatically know more than them because we have diabetes and they might not, but if something doesn’t sound right or feel right in your care, you should speak up, because your doctor isn’t always going to get it all the way right all the time.

8. “Sugar-Free” doesn’t mean “Diabetes-friendly”.

I don’t know about any of you, but if I had a nickel for every time someone gave me Sugar-Free candy or cookies in place of regular in an attempt to be thoughtful, I’d have enough money to for all my supplies out of pocket. A lot of people just aren’t aware that in addition to having sugar alcohols, which can mess with your digestive system and cause severe stomach pains, often times, the products labeled “Sugar-Free” usually have more carbs than regular versions of the same product.  And the regular versions definitely taste better, too.

9. Spontaneity still requires forethought.

Gone are the days when I could just walk out the door and head to a friend’s house without so much of a thought as to when I needed to be home. Now I have to at minimum bring my meter and strips, but more often than not I end up bringing a bag filled with low snacks and extra pump supplies in addition to my testing kit. Just a small night out requires me to think about all the potential things that could go wrong with my diabetes, and make sure I’m prepared for them.

10. Ignorance about diabetes is a pandemic.

“Yes, I can eat that.” “No, it’s not ‘the bad kind’.” “No, I won’t grow out of it.” The mere fact that we have to say these things on a regular basis shows that there is way too much misinformation out there about diabetes. Our job is to be educators, and set the record straight to try to prevent those memes about diabetes from spreading. You know the ones; “Bob has 30 candy bars and eats 20, what does Bob have left? Diabetes.” Even if we manage to educate one person, we can potentially save lives and stop the spread of misinformation.

11. Advocacy is important.

As unfortunate as it is to say, it isn’t considered “cool” by society to advocate for diabetes (that attitude is changing, but we still have a ways to go). The NFL doesn’t wear blue during the month of November to bring awareness, and there aren’t t-shirts out there that say “Save the Pancreas”. It just shows that we need to keep pushing to raise awareness.

12. You are not alone.

Sometimes it may feel like you are the only person who knows what it feels like to have diabetes, but that is not the case at all. The Diabetes Online Community is always available to talk to when you have a question or need to vent your frustrations. I’ve met some lifelong friends because of the online community. Social Media platforms like Beyond Type 1 and forums like Children with Diabetes are great places to start if you want to meet people who are going through the same things as you are.

Overall, I know that while I still have learned a lot over the last 12 years, I still have a lot more to learn. We are discovering more about diabetes every day, and who knows where we will be in another 12 years?

What about you guys? What have you learned so far? Let me know in the comments section below!

Community Spotlight

Community Spotlight: Truckstop Honey

Today I am excited to announce a new segment on my blog: Community Spotlight. Each month I will bring you an interview with someone in the diabetes community. Each will share their story and how diabetes affects their life.

Our first interview is with Amanda Jo and Billy Lee, who together form the country group Truckstop Honey. They have their first album coming out this Friday, October 6th, 2017, and honestly, I am so excited for it. Their first single, Polaroid, was released this summer and is one of my new favorite songs. Check it out below:

I met Amanda and Billy at Friends for Life this past July and knew I wanted to interview them. Let’s see what they had to say.

What connection do you have with diabetes?
Amanda Jo: I was diagnosed with Type 1 Diabetes in April 2000.
Billy Lee: I was first introduced to Type 1 Diabetes when I met Amanda in
November of 2012. I’ve learned so much about diabetes since then. Now I am a
proud Type 3!

What made you decide to work together?
Amanda Jo: Billy was the first person I met when I first moved to Nashville. He
was hosting a songwriter’s night at The Nashville Palace and I was new and
trying to meet other songwriters in town. We became friends pretty quickly and
started writing songs together. We played our first show together when Billy’s duo
partner at the time suddenly moved back to Texas. We spent three years touring
together as two separate artists before we decided to join forces and become
Truckstop Honey.
Billy Lee: Working together was a natural thing. Even though we were different in
the music we made, our approach was the same. It was all about real music
made in a passionate way.

How does diabetes affect your life in show business?
Amanda Jo: Diabetes definitely has its own set of unique challenges. It can be a
struggle to keep blood sugars stable while dealing with adrenaline from shows,
long travel hours and unplanned meals. Thankfully my Tandem t:slim X2 insulin
pump and my Dexcom G5 CGM makes a HUGE difference in managing diabetes
both on and off the stage. I’m grateful for their technologies that make managing
diabetes on the go a lot easier.
Billy Lee: I just have to remember that sometimes she may be low or high and
sometimes she needs to take a few minutes to take care of her diabetes. Her
Tandem pump and Dexcom sure makes a big difference.

Have you ever had diabetes interfere with your work?
Amanda Jo: I’ve dealt with some low blood sugars during a show. It doesn’t
happen often, but it is something I have to deal with on occasion. I remember a
show I had in Indiana where I could not get my blood sugar to come up. I drank 4
cans of regular Coca-Cola and it wouldn’t budge! In a low blood sugar induced
brain fog, I forgot a few of the lyrics. I’m not sure it was the best show I’ve ever
played, but I made it through! The secret is to be prepared. I always make sure I
have sugar on stage with me so I can treat any low blood sugars as quickly as I
can without disrupting the show. While diabetes affects every part of my life,
including music, I am determined to not let it stop me from following my dreams. In fact, my diabetes has never been better controlled since diving into the music
business full time.
Billy Lee: I don’t think it interferes at all.  We both pay attention to it and through
good monitoring it doesn’t create issues.

Your album is coming out soon. Tell me about the process and what
inspired you.
Amanda Jo: We are so proud of this new album! It is called Polaroid and it
releases October 6 th . The album has 14 songs on it that were all written or co-
written by Billy and myself. It is a 14 song snapshot of our lives over the past few
years — which is why we called in Polaroid. We were lucky to have written with
some of our favorite songwriters in Nashville. Every song was written from a
personal place. The album was inspired by love, by loss, by taking chances, by
being yourself and by never giving up.
Billy Lee: The process would take five pages to explain, but it’s been rewarding
for sure. We are proud of this album. The list of inspirational things would be very
long as well. Amanda inspires me. My daughter inspires me. My mom and dad
inspire me. My songwriting community and songwriters inspire me. Selfless acts
inspire me. Great guitars inspire me. Making music that matters inspires me
most.

How did you get involved with Children with Diabetes and Friends for Life?
Amanda Jo: Children With Diabetes was one of the first and most important
resources my family and I had to learn about life with Type 1 Diabetes when I
was first diagnosed. I remember spending hours on their website, reading stories
from other kids with Type 1 and learning how to deal with both the physical and
emotional highs and lows of diabetes. I would look at the pictures of the Friends
For Life conference and dream of attending. 16 years later in July 2016, I was
invited by Jeff Hitchcock to share my story with the kids at Friends For Life. It has
become my absolute favorite event. I love getting to perform for the CWD kids
and spend the week sharing on how diabetes has not stopped me from following
my dreams of music.. The magic of Friends For Life cannot be fully explained in
words. Every year I leave more inspired by the stories, the friendship, and the
love from each person there.
Billy Lee: Amanda asked me to go with her two years ago. It was life changing. What a positive environment and community. They instantly made us feel like family. We look forward to attending and playing shows there every year.

If you want to learn more about Amanda and Billy, or more about their music, check them out on Facebook, Instagram, Twitter, or at their website www.truckstophoney.com.

And don’t forget to get their album on October 6th, 2017 wherever you get your music!

Want to be in the community spotlight, or know someone who would be great in the community spotlight? Send me an email at danniphantdiabetes@gmail.com!

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Finding my Tribe: My experience at Friends for Life Orlando 2017

In 2014, I was in the middle of my college experience and feeling burnt out. I didn’t know any other diabetics my age, and the few I had met online felt like figments of my imagination, not real people. I felt alone, hopeless, and like no one understood what I was going through.

Enter Friends For Life.

Now I couldn’t tell you where and when I first learned about this conference. What I can tell you is that the idea of thousands of people who are all connected to the diabetes community gathering in one place intrigued me. So I looked into how I could attend the 2015 conference that next summer. I was extremely lucky and was able to get a scholarship through the Diabetes Scholars Foundation, so in the July of 2015, I packed my bags, boarded a plane, and flew to Orlando, unsure of what I was about to walk into.

As soon as I walked into the conference center, I felt like I was at home.

Friends for Life is a place where everywhere y

iiioou look, you are surrounded by people who just get it. Every single person at this conference either has diabetes or someone they love has diabetes. You look around and see a wave of green (diabetes) , orange (family of person with diabetes) , and yellow (celiac) bracelets, and know that when you say you have a low blood sugar, you will have a bunch of people ready to share their low supplies with you. It is a safe place, where if you forget something, you can relax and know that at least one other person there uses the same supplies and can lend you a lancet or an infusion set if you need it.

I mean, who wouldn’t want to be in a place where when a Dexcom alarm goes off, twenty people look at their smart watches or their receivers to make sure it isn’t them?

It’s a place that is filled with so many good vibes that people will wear their wristbands until they fall off because they don’t want to forget the good times they had.

 

I left my first conference with a new lease on life. The people that before were just names on a computer screen now had become real to me. I went back the next year, meeting even more new friends (called FFLs) and left knowing I had to give back to this wonderful organization that had changed my life.

So this year, I decided to join staff and work with the tweens (aged 9-12). I felt a connection to this age group since I was diagnosed with diabetes when I was 12 years old, so I felt like I had an instant bond that went further than the diabetes connection with these kids.

I wasn’t prepared for the lessons they would teach me.

I guess because I was diagnosed as a tween, and all the people I had met who had had it since they were infants or small children were adults like I was, I never really understood what it was like to only know diabetes. Some of these kids didn’t know anything else but diabetes, and others were like me who had only recently been diagnosed. But the biggest shock was the realization that I had had diabetes longer than most of these kids had been alive.

It was a sobering thought.

But with the sad realizations came some adorable experiences as well. I found a tween named Victoria who shared a diaversary with me, and a tween named Jordan who shared a birthday with me. I was in a group with this awesome kid named Logan (check him out on FB at The Elbow Bump Kid), who almost singlehandedly made sure that the conference would be able to enjoy Mickey Bars (which to those who don’t know are these delicious ice cream bars shaped like Mickey that somehow taste better at the Friends for Life Conference). I was also renamed Not-Chelsea by another tween named Maddie, and she called me that for the entirety of the conference. But one of the cutest things I saw was this girl named Sara. Her little brother has diabetes, and she said she didn’t want him to feel alone, so she got this little stuffed bear (named Veggy, in case anyone was wondering) and decided that the bear had diabetes as well. So she tested his blood sugars, treated his lows and highs, and tracked all of it in a log in her notebook. I thought it was so sweet.

And any mood can be brightened with the exhibit hall at the conference. They don’t lie when they tell you to leave room in your suitcase when you come to the conference. You will walk away with so much free stuff that you will always be able to show off your FFL memories in some way. This year there were a few new vendors like Myabetic (who have some of the cutest bags made for diabetics), Genteel (pain-free lancing device (which is no. 1 on my wish list right now), and this cool device called MedAngel, which tracks the temperature of your insulin (look for my review on that coming soon!). There were also a lot of repeat vendors, like Novo Nordisk, DRI, Lilly, Tandem, Dexcom, Insulet, and Animas. It is a great feeling to see all these organizations and businesses who want to make life with diabetes better gathering in one place (and the free stuff doesn’t hurt either!)

The memories I made this year will stay with me forever, partially because I will keep them in my heart, but also because I have a wonderful keepsake to remind me of all the people I met.

All of my FFLs (minus a few that I didn’t manage to track down before they had to leave (aka Morgan, who will have to sign twice next year)) signed this pillowcase for me so I can remember the little things, like how one liked wearing a sparkly silver bow in her hair, or how another was always cold like I was. I was especially excited that two of my best FFLs, Samantha and Eleanor, were able to sign as well, since I was on staff and didn’t get to see them as much this year.

I’ll admit I was not as good at taking pictures as I could of been. I played the model this last week more than the photographer, but I hope I was able to paint a vivid enough picture of what my experience was like to convince you that you should consider coming to join us next year. If you want more information, you can go to here and learn more about this amazing experience!

I’m exhausted, and I picked up a cold somewhere during the conference, but I can’t wait to go back and be surrounded by my Friends for Life.

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A New Beginning

For the past couple years I have always told people that I wanted to create something that people could look at and know about what life with diabetes was like. I started a blog, and then quickly ran out of steam. Then I started a YouTube channel, which became very hard to keep up with (mostly because if I don’t have to change out of my pajamas, I won’t, and filming made me do that), so I burned out within a week.

But I still felt like I was supposed to be creating something wonderful, something people would see and feel inspired by, and that feeling was eating me up inside.

And then I got sick, like “stay on bedrest for a few weeks” kind of sick.

It sucked.

But while I was stuck on bedrest, I found this vlog on YouTube that was an everyday vlog. Some days the videos were half an hour long, and sometimes they were only a few minutes. It made me realize that I was going about it all wrong. I was trying too hard to plan what I was doing that I was missing all the day to day things that were really driving my point home.

So I made a new game plan. Just blog. Don’t worry about what I am going to say and write what happens whether it’s good or it’s bad.

So just as my family has finished our Spring Cleaning, starting with a clean slate, I am starting with a clean slate as well.