Monday, July 16, 2018

Friends For Life Orlando 2018

A few of my friends for life.

Every year I find myself lost at where to even begin to describe my time at this conference by Children With Diabetes. This is going to be a messy post because my brain is all jumbled due to happiness. I’m going to repeat something I said on Instagram. If I had to describe FFL in 3 words, they would be “comfort”, “love”, and “freedom”. There is no place in the world where a Type 1 Diabetes family can feel more comfortable. You’re surrounded by hundreds of families just like yours, and you know that if something goes wrong everyone around you will want to help. Insulin vial went bad? Someone will find you with an extra one they happened to have. Have a sick kid? Everyone will get together to make sure they’re taken care of. The support, the camaraderie, and the caring for one another at Friends for Life is incomparable to anything I’ve ever experienced. 

Let me re-explain what the Friends for Life conference is. Started by one of the most amazing women, Laura Billetdeaux, she imagined a place where Type 1 families can come together. Little did she know what her little idea would grow into. Friends for Life is for all Type 1s and people who love them. If you’re Type 1, you get an green bracelet. If you love someone with Type 1, you get an orange bracelet. And if you have Celiac, well, you get a yellow bracelet and must stay away from the gluten. But no worries, they have their very own buffet! Sessions go on all week, many at a time, and you can look at the schedule and choose which ones you want to attend. There are informational sessions, emotional sessions, sessions with research updates, and interactive sessions. 

Awesome photo by @karley.renay on Instagram.
I’m going to start with my first day. Tuesday is registration day, so the most exciting part is running into all your old friends in the hallways! Usually reuniting with the biggest hugs. At night the staff and faculty hung out at Splitsville, an awesome bowling alley in Disney Springs. It was so much fun and such a great way to get pumped up for the upcoming days. 

The hallways are happy here :)
Wednesday is the first day of sessions. I went to “Diabetes Connections: The Game Show”, hosted by Stacey Simms. The audience got to watch some T1D trivia take place, and it was great because Stacey is just hilarious. My favorite part was a game where she talked about TV shows that have inaccurately portrayed T1D and the panel had to finish the sentence. Law and Order, Blacklist, and The Flash were mentioned. Stacey actually recorded her session for her podcast, so you’ll be able to hear how that went down when she gets that up. 

The wonderful Stacey Simms doing her thing.
In the afternoon, I volunteered at the sticker table where everyone decorates their name badges! This is just as equally for the adults as for the kids. I love volunteering because, one, who doesn’t love stickers? And two, because I get to meet everyone while they have fun decorating their badge! 

When we closed, I spent time with my friend who was working at the Retinal Screening that is offered for free to participants. We chatted and she convinced me that this doctor is he best, and that I have to have a retinal screening done by him. So I went for it, and apparently my eyes are as healthy as can be! I was told you can’t even tell I have Type 1 by looking at the images! That’s always nice to hear. They have very advanced technology that will show the earliest signs of Diabetes affecting the eyes, so it’s worth getting it done if you go so that you can be proactive. 

At night was the Grand Opening Ceremony. At 6 o’clock sharp, the ribbon in front of the Exhibition Hall gets cut and everyone swarms in. It’s like Black Friday - Friends For Life edition. All sorts of companies who make diabetes supplies, non-profits, and small businesses have booths. Many are giving away free swag, and there are activities everywhere for the kiddos to do. The big hit with them this year seemed to be the slime at the Lilly booth. I can never explain how huge this place is. You have to see it with your own eyes. 

Exhibition Hall Opening.
This was also our first meal! Like I’ve said before, every food out on the table has carb counts next to it. The team, including a nutritionist, work so hard to put together great meals and figure out the measurements of every single thing. 

Photo stolen from my wonderful friend, Janice Gaskins.
Thursday morning was the opening Keynote. This year we had Will Cross talk about his expeditions climbing Mount Everest, and wow, was it a good example of the things you can do with Diabetes. 

This year I was lucky enough to join the faculty, joining with friends Kerri Sparling and Scott Johnson to talk about social media, and where to find your place online. It was my first time speaking, so as you can imagine, I was nervous. But stepping out of my comfort zone definitely paid off. The session was fun, and when Scott asked me how I liked it when we were finished, I couldn’t wipe the smile off my face. It was so nice to be able to speak about social media, which I’m pretty passionate about when it comes to finding support and making connections. 

Thursday night was the Family & Friends Banquet kindly sponsored by Novo Nordisk. Every year this banquet has a theme, and this year it came with lots of island vibes. We were told to think “Moana” and “Lilo & Stitch”. I came equipped with a flower crown, and was surrounded by people wearing leis. Raelynn, a country artist, who happens to be one of my favorites, performed for her third year in a row. She was incredible as kids swarmed the stage. My friend Gretchen and I acted like little fangirls and got up close. It’s always so surreal, but so amazing.

The calm before the storm. Photo by Children With Diabetes.

Gretchen, Stitch, and I!

The beautiful Raelynn up close :)
I had a fun sleepover with Morgan, one of my “diabesties”, and she was prepared to help me wake up early the following morning. We each woke each other up with a low blood sugar overnight. Let me tell you, diabetes sleepovers are the best. 

After fulfilling her promise and helping me wake up in the morning, we attended Korey Hood’s session, “Avoiding and Overcoming Diabetes Burnout”. We discussed what leads to burnout, and numbers came up. Mostly how they’re unpredictable. About how we can do the exact same thing that we did the day before and end up with different results, and how frustrating that is. Right away I thought back to my blog post about A1C, and not basing your worth on it. Like Korey pointed out, we’re human and we can’t be perfect all the time... especially with such an unpredictable disease. During the session the mom of a newly diagnosed 9 year old spoke up. She was feeling the burnout. Because burnout doesn’t only affect the one with Type 1. It can affect the whole family. But even more so, the caretaker. Being thrown into the Type 1 world upon diagnosis is kind of like being handed a parachute on a plane and telling you that you have to jump. You’re terrified, you have no idea what you’re doing, yet all of the sudden you’re doing it. I tracked down that mom after and reminded her that the parents of Type 1 kids are the heroes behind the scenes. After letting some emotions out, we hugged and thanked each other. 

Saturday was the quiet day at the conference, and my friends and I went to Magic Kingdom, which was magical, as always. My friend Ashlyn and her mom made us these amazing tanks that said "I like my carbs Mickey shaped", which is the truth! 

Girls with pumps and CGMs!
Every year there is an amazing young adults dinner, and an adults party. I was talking about being in such a safe space if things happen to go wrong, like they can on vacations. Exhibit A: Morgan, whose BG happens to stay in a low range, felt a bit funny, only to see her blood sugar was 491 mg/dL (27.2 mmol/L). She took her infusion set off only to see that the catheter was completely bent, and she hadn't been getting insulin for the past 3 hours. Anyone with T1D knows how quickly a situation like this can turn extremely dangerous. I ran around to find her a syringe so that she can manually give herself some fast acting insulin, and it only took me about 2 minutes before I was being offered syringes and she was being offered insulin pens. She was covered. Her and my mom even went to speak to Dr. Stephen Ponder who was attending "Desserts with the Faculty", and she was reassured that she's doing everything right. Because we were in such a safe place, surrounded by people who knew how to help and wanted to help, she recovered quickly!

White party fun.

Let me get back to the topic of support at this conference. Like I said, Friends for Life is the most comfortable place you can be as a Type 1 Diabetic. Friendly faces everywhere. Everyone is keeping their eyes peeled for those green and orange bracelets, and when we see each other on the hotel grounds, we always say hi regardless of if we've met yet or not. Automatic family. Warm smiles everywhere.

A favorite part of mine is seeing all the little kiddos with green bracelets. Omnipods that look giant on their tiny arms. Running around with other green bracelet wearing kids having the time of their life. 

Two of my best littles.
One question I've seen asked by some is "My child was just diagnosed. Is it too soon to bring them to the conference?" The answer is NO. It is never too soon! Bring them. Let them be in a place full of people just like them. Give them the opportunity to make friends that understand them in a whole different way. Allow yourself to come to a place where there are parents all around who will take you in, and they will understand where you are and where you've been.

Then came yesterday morning. The Farewell Breakfast. Fun picture opportunities with characters and Mickey waffles, but also hugs goodbye everywhere leading to tears. Like I said, there is no place for a Type 1 like Friends for Life. It’s the one place where it’s not unusual to be the one with diabetes. As a matter of fact, I think a lot of the orange bracelets were kind of wishing they had it too during the days of the conference. The one time having Diabetes really makes you feel special! But Children with Diabetes makes sure to have an amazing program for the siblings, making it such a fun experience for them too. All of this makes it so hard to leave. Where else can you feel so understood? And that's where the tears come. Knowing how much we'll miss everyone all year. Leaving this place of love and community. 

Saying goodbye to my little friends :(
FFL always seems to inspire me and give me purpose. I get reminded of why I do what I do. Seeing the bravery in these kids. Seeing the strength in their parents who deal with so much worry all year round, yet get a chance to breath during this one week. Seeing grandparents come to attend the grandparent sessions, showing so much love for their family.  Seeing people with tears in their eyes in the hallways, not because they're sad. But because they feel a huge relief.
Friends for Life personally changed my own life. It showed me that there is a place for everybody in this world. Friends for life is mine.

A special thanks to Children with Diabetes, Jeff Hitchcock, and Laura Billetdeaux for making this possible.

Saturday, July 7, 2018

The Reality of Wheelchair Usage In The Chronic Illness Community

When I was given my first wheelchair prescription a year ago, it was an exciting time. It meant freedom. It meant I would be able to do so much more of the mall when my legs didn’t want to. It meant I didn’t have to feel like I was going to pass out when I was done shopping. When a wheelchair is prescribed as a tool, it feels like a victory in a way. Life is going to be easier now. Your fellow chronic illness friends tell you not to be embarrassed, and that this is a tool you deserve. That’s what it was like when my first custom wheelchair was prescribed. 

But what about when you’re sentenced to your chair? What if you don’t have a choice? What if you can’t say “Meh, I don’t feel like using it today”? That feeling of gratitude for your chair can quickly change into resentment. 

Recently I began having full body spasms that have caused me to fall over multiple times and hit my head. It was determined it was no longer safe for me to be ambulatory for the time being. And I was prescribed an electric wheelchair. 

Only this time it didn’t feel like any sort of tool or thing to be grateful to have. I felt angry at the thought of it. And then life was different. For the moment, I am a wheelchair user. And unlike before, I feel a bit of a sting in the belly when I say that. 

I’m going to be real. I’ve looked at wheelchair users and admired their courage. But I never really thought about the other type of wheelchair user. The type who doesn’t have a choice. The people who are stuck to their chair. And I didn’t realize that in that situation, you need a period of time to grieve. To grieve your previous life, and to slowly accept your new one. And I’m not saying that life in a wheelchair can’t be just as amazing as life standing up! But going from standing to being forced to sit all the time; it’s a huge change. 

Things hit you in the face when they happen for the first time. Trying to try clothes in the fitting room of a store on while you’re stuck to your chair when you’re shopping. When you’re in a bathroom for the first time and realize that there’s no wheelchair button, that there’s no way for you to open the door, and that you’re the only one in there and you’re stuck. Yes, this happened. A kind lady who worked at the market I was at saw me looking for a wheelchair button on my way into the women’s room. She graciously held the door open for me. But little did I know she was locking me in there unintentionally! (At least now I can laugh about it.) I went to the washroom, washed my hands, and went to leave, only to find out there was no button to automatically open the door. The design of this bathroom had me trying to open the door, while sitting in my chair, and trying to turn a tight corner. So though I didn’t stop trying, I ended up having to wait to be saved by the next person who had to use the washroom. Thank you to the kind lady who accidentally stumbled upon my rescue.  A humbling experience if anything. 

So right now I’m in between the stages of mourning and acceptance. And I’m hoping with everything I have that soon I will no longer be a high risk for falls and my health improves. But for now, this is life. 

And so here’s a note to myself: You didn’t ever expect to be here in this situation. Things will be a little different from here on out. So take your time to grieve the health that you’ve lost. Take time to be angry at where life has taken you. But also acknowledge the new opportunities this chair can give you. Know that your life can change for the better now. Know that this doesn’t mean the end. It doesn’t mean you’re giving up on anything. It means you’re moving forward despite what life has handed you. Look at the stories you post on Chronic Love Club by people who are not only living, but THRIVING, in their wheelchair. This is going to be an adjustment, but it in no way the end.