Diabetes By The Numbers: Asha Brown

Asha Brown is a unique individual. Diagnosed with Type 1 diabetes at the age of five. She later developed diabulimia, a dangerous condition. Fortunately, she was able to overcome diabulimia, and she has been in recovery for seven years now.

The really cool thing about Asha is that she co-founded We Are Diabetes, which works with families patients, and health professionals across the USA to help and support those living with diabetes and eating disorders.

Today, we talk about diabulimia, how We Are Diabetes serves and supports, and the challenges faced by patients post-treatment. This was a conversation I’ve wanted to have for a long time, and I came away with a lot of knowledge that I didn’t have when we began.

Reference Material – Click below for more information on this topic

Asha Brown is Founder and Executive Director of We Are Diabetes, which provides information, hope, and support to people living with diabetes and eating disorders:

It’s about the people.

Like I mentioned before, last week was a very busy week. Part of that week meant being busy in a very pleasant place. Mixing work with pleasure? Okay, I’ll do that.

I spent last Wednesday, Thursday, and Friday working at the DPAC booth at the annual Children With Diabetes Friends for Life event. This is the mother of all diabetes gatherings, with thousands of People With Diabetes and their families descending upon Orlando for nearly an entire week. This was my first experience being there for more than just a day, and admittedly, my experience was not the typical conference-goer experience, but here are some things I experienced and noticed during my time there.
I arrived on Wednesday morning, about an hour or so after MasterLab began. MasterLab is a one day advocacy workshop presented by Diabetes Hands Foundation. There were a number of presentations, and I hope all of the attendees got a lot out of them, or at least were able to grab a nugget or two that they can use in their advocacy efforts in the future.

What I experienced: I saw many advocates from many countries who were very much into the focus of the day, which was to advocate for everyone living with diabetes. It’s sad to know that diabetes advocacy is needed elsewhere in the world, but good to know that there are stellar advocates living in Columbia, Mexico, Puerto Rico, the UK, and other countries.

What I noticed: Much of the talk was USA-specific, which risks alienating those attending from other countries, but I’m hoping this is a temporary “we’re learning how to do this” kind of thing.
Diabetes Patient Advocacy Coalition is a remarkable resource for people living with and affected by diabetes. We were able to garner many signatures for the Dexcom G5 labeling petition to the U.S. Food and Drug Administration, which will be holding a hearing on July 21 to discuss the issue. Our goal was to get 5,000 signatures on the petition. As of right now, we’re nearing 6,000. Yay Diabetes Community! The diabetes community was able to rally to this so quickly thanks to the fact that DPAC makes it so easy for someone to add their name and voice to the issues that mean the most to us. I urge you… take a hand in your own diabetes advocacy by going to diabetespac.org and signing a petition or sending an e-mail. We do best when we speak for ourselves. Tell your story. Tell it from the heart.

What I experienced: Despite being “on stage” (to use a Disney term) most of my time there, the exhibit hall was punctuated by bursts of activity before and in between conference sessions, then amazingly slow lulls once the sessions were, um, in session. I’m not sure how I did for DPAC, but I hope I did well, and I was happy and honored to do what I could.

What I noticed: There is still an overwhelming desire for knowledge among the diabetes community, especially its newest members. During my time manning the booth, I met a pair of first-time attendees, grandparents of a young person diagnosed not too long ago. As we discussed our diabetes lives (like you do), and they expressed some of their concerns, they must have seen the “everyone’s been through this phase” look on my face. One of them looked at me and said, “You’ve been living with this for 25 years… we want to know… tell us!“, as only a grandparent can express it. These two wanted to know everything about insulin, devices, burnout, you name it. They were in the right place that week to learn about all those things. And that’s not the only conversation I had like that while I was there. This is one of the many reasons why we need DPAC.
Finally… the one-on-one, human interactions with people are what make these gatherings special. I’ve said that many times after events like this, but it is an undeniable fact. The Diabetes Online Community has been vital in bringing together people from everywhere who have felt alone living with diabetes. Especially people like me. But the internet can only do so much. While my social media connections helped me crawl out of a depressive shell many years ago, the interpersonal connections have helped me stand tall, and build constructive and meaningful relationships that will hopefully last a lifetime. It’s that much more.
What I experienced: The feeling that no matter how big my diabetes circle of friends is, there’s always room for more. It was great seeing existing friends like Karen and Bea and Scott and Mike, but it was also wonderful to finally meet Cara, and meet Tina, and meet Nia (who lives in my city!), and meet Becky, and Trip too. And almost instantly I want to hang out with these people, and advocate for them, and protect them. That feeling comes from actually meeting people and getting to know them at a level that few are capable of, because the one thing you have in common is the one thing that bonds you tightest to each other.

What I noticed: I was not the only one who noticed the absence of Medtronic at FFL. Every other pump manufacturer was there. Dexcom was there too. There are probably reasons for this which I’m not privy to, but many people noticed, and their speculation of why Medtronic was absent covered a broad spectrum of opinions. I’m not sure it matters why Med-T didn’t make it, and maybe it was okay that they weren’t there this year. But to use the word again, the absence of Medtronic allowed others to form their own opinions about products and corporate behavior, whether those opinions were accurate or not.
Because I spent most of my time working in the exhibit hall, I can’t say that I had a typical conference attendee experience. But because of these moments and others, I did have a typical, wonderful personal experience during my three-plus days in Orlando. Thanks to DHF for my invitation to MasterLab, and a special thank you to Diabetes Patient Advocacy Coalition, Christel Marchand Aprigliano and Bennet Dunlap, for the opportunity to put my mouth where my motivation is. Or something like that.

All of this reinforces the notion that it’s not about the disease, it’s about the people living with the disease. The idea that if you fall into a hole, someone will jump in to help you. Because they’ve been there before, and they know the way out. Our lives don’t get easier with our diabetes diagnosis. But knowing that others are walking the same stretch of road, right alongside us, makes us closer.

I’m back!

That’s right… I’m back. Back from Florida (more about that soon), and back as an athlete.
Sunday marked the yearly occurrence of my local neighborhood 5k run. The 2014 5k was the last athletic event I participated in before my knee was injured and repaired last year.

It was a difficult process, getting my body down to a workable weight, and getting my stamina up to the point where I could cover 3.2 miles without passing out. Even three weeks ago, I couldn’t cover two miles without wheezing and gasping for half an hour after. Could I make it all the way?
Well, the last three weeks have made all the difference. I’ve concentrated on feeling comfortable running, and not pushing myself to the brink like I’m used to. Did I walk part of the way? Yes. I walked about 3 or 4 tenths of a mile during this run. But again, the number one goal in every event I participate in is finish. Everything else is secondary. And in the end, I didn’t finish too badly:
My goal (beyond finishing) was to finish in 40 minutes or less. From the photo above, you can see that I finished in just under 34 minutes, which is faster than I’ve run all year.

My diabetes played well all day. Just a little high (170 mg/dL) at the beginning of the run. I ran a 30 percent temporary basal for an hour, beginning just before the race began. The end of the race saw a 148 mg/DL. Well played, Stephen.

There are many factors that went into this successful effort. But there’s no denying: I’m back. And it feels so good to be back. Now I know I can do it. Don’t ask me what my next event will be. But now I know there will be another event. That makes me very happy.

A very busy week.

Wow, I am right in the middle of a very busy week. Sometimes, things just happen all at the same time. This is one of those times.

On Friday afternoon, I began a week long vacation, which, if you think about it, is really a nine day vacaton. At least for me it is. So… do you think I would rest up, take it easy, get a little extra sleep? Yeah, right.

On Friday afternoon, I came home from work and climbed into a rental truck. We moved our dining room furniture from Maryland to Ohio. So we drove part of the way Friday night before finding a hotel to crash in before driving the rest of the way on Saturday morning.

Saturday, we wound up on Maureen’s sister’s farm outside of Cincinnati, unloaded the furniture, and spent part of a wonderful day. We slept overnight, had breakfast on Sunday morning before dropping off the rental truck, and then headed back east. We drove all the way back Sunday, which means we covered nearly 1200 miles in a little more than 48 hours.

Wait… I’m not finished.

Monday was the 4th of July, America’s Independence Day, which is a national holiday, unless, of course, you have work tasks that no one else can do for you, so you spend part of said holiday actually working. On your vacation. Greeeaaaatttt….

Tuesday went by quickly. Oh, I should mention: bad, bad low in the middle of the night Monday night. Everything turned out okay in the end, but I got very little sleep again. This vacation thing is not working like it should. Anyway, on Tuesday morning, I ran my last training run before my upcoming 5K. More on that in a minute. I also had laundry to do, and I needed to pack. I made a super flatbread pizza for dinner. Too much information?

Wednesday begins the best part of the week. I’m headed to Orlando, where the annual Children With Diabetes Friends for Life event is taking place. I’ll be sitting in on part of MasterLab Wednesday. MasterLab is a place for diabetes advocates to come together in a one-day workshop to learn about how to amp up our efforts for better access, better drugs, and better costs for everyone living with our disease. Disclosure: Diabetes Hands Foundation has invited me to attend MasterLab. They are picking up the tab on my registration. All opinions are my own.

After MasterLab, it will be my honor to head to the exhibit hall, where I’ll be working the booth for Diabetes Patient Advocacy Coalition. If you’re in Florida, please come by and use the DPAC easy button to add your signature, send your e-mails, and up your diabetes advocacy in no time at all. If you’re not in Florida this week, it’s okay. Just go to diabetespac.org, and you can advance the cause right from your own home. Thanks!

I’ll be in Florida Wednesday, Thursday, Friday, and Saturday morning before heading back to Baltimore. But wait… that’s not all!

Sunday will be my 5K, the event I’ve wanted to get under my belt for two years. My comeback event, and even though I’ll be slow, I’m really looking forward to it. I may be tired, but I’m doing it.

Monday morning, I’ll be back at work again for the forseeable future.

Here’s how I look at it: I’m in the middle of a very busy week, and I’m not going to get much rest during my vacation. But I’m crossing a lot of things off of my list, so the next time I get some time off, hopefully, I can spend some time resting and relaxing.

And don’t feel sorry for me. I chose to do all of this, at this time. I could have said no to any or all of it. But I didn’t. Because I didn’t want to. My life is full of a lot more fun and adventure today than it was back when a week off meant a week at home sleeping late and watching TV until the wee hours of the morning. I’m happy to serve the community through DPAC, and I wouldn’t trade my life right now for anything. Except maybe a fully functioning pancreas.

I’ll catch up with you next week! In the meantime, you can follow the goings on in Orlando by following the hashtag #CWDFFL16.

Like these links.

Even though I’ve really wanted to, I’ve been way too busy lately to write my own stuff. Instead, I’m going to direct you to some really great blog posts from writers I am proud to say are part of my tribe. Check them out…
Laddie Lindahl at Test Guess and Go has a superb write-up of why she often uses her Dexcom G5 CGM to make dosing decisions, and why, with knowledge and experience, she thinks you can too:
Subtracting the Adjunct from Dexcom G5

Katy Killilea of Bigfoot Child Have Diabetes talks about that sad moment when you have to say goodbye for the last time to your favorite endocrinologist. I thought the people in that photo looked familiar!
Goodbye, Dr. Pepper

Scully, AKA Canadian D-gal, and her husband Ryan are amazing athletes. Recently, they were amazing athletes who set off on a three day camping trip… on their bikes. Read all about it, including how they traveled around with everything on two bikes, as only Scully can tell it:
Bike touring/camping. Not for the faint-hearted.

Finally, Liz over at Get Ready, Get Set… Oh no! I’m Low has one of those stories (actually, two of those stories) about meeting others living with diabetes, just out in our everyday lives. I’m including it here because she tells it well, and because I just thought these two encounters might make you smile:
One of Us
Well, I have my own stories to tell, but I need to find some time to sit and write them down. Hopefully, that will be soon. What have you been reading about lately?