Shining A Light on Diabetes + Eating Disorders

This week is National Eating Disorder Awareness Week. While I know many of us feel like we have an unusual relationship with food, there is a legitimate eating disorder related to diabetes: diabulimia. Diabulimia is the term frequently used for people who omit insulin in order to lose weight. Omitting insulin allows the body to burn fat for energy, but it also creates toxic ketones and causes many complications.

Asha Brown, a fellow type 1 PWD in the Twin Cities, has recovered from her eating disorder and experience with diabulimia. Asha has launched an organization, We Are Diabetes, to help spread awareness about eating disorders and bring hope to those who are suffering with it. You are not alone.

A Guest Post by Asha Brown

asha2Living with type 1 diabetes means that you have a different relationship with food than other people. You live your life in between the demanding rituals that happen multiple times a day: before and after a meal or any type of snack. When I look down at my plate I don’t just see the food itself. I see numbers. After living with Type 1 Diabetes for 23 years, I have calculated the nutritional components of thousands of meals while also considering time of day, activity level, stress and many other necessary factors before deciding how much insulin I need to inject. Although I am now at peace with this routine, there were ten years of my life where I lived in a fog. I grew tired of the unyielding routines that Type 1 diabetes demands on a daily basis. I was afraid that others would see me as broken and fragile if I had a low blood sugar at an inconvenient time (and let’s face it, it’s always an inconvenient time to be low).

What started out as an attempt to just keep my blood sugars a little higher than normal to avoid any possibility of a hypoglycemic attack during a performance or out on a date, quickly manifested into a dangerous eating disorder. I became lost inside a cycle of coping behaviors that soon became my entire life. Diabetes felt like an unfair burden to me and to my life’s goals and I rebelled forcefully against it. I didn’t know how to ask for help and for years I didn’t know if I even wanted help; I had forgotten how to take care of myself and my eating disorder became my world.

My life changed in many ways the day I finally shared my secrets to my family and to my husband. I was lucky enough to receive treatment at one of the most qualified eating disorder treatment facilities in the country, the Melrose Center at Park Nicollet in Minnesota. It has a fully developed treatment track for diabetics with eating disorders. Recovering from any eating disorder is extremely difficult; it challenges a person both physically and emotionally. The process of learning how to cope with life and its unexpected challenges without the protection and safety of an all-consuming obsession leaves you raw and exposed to all of the emotional and physical feelings humans are capable of experiencing.

As I started a new chapter of my life in recovery, I soon discovered that I wasn’t the only T1D who had struggled with this dangerous eating disorder. In fact recent studies suggest that over 30% of Type 1 diabetic women may omit or restrict insulin for weight loss purposes at some point in their lives (Goebel-Fabbri et al, Diabetes Care, 2011). With a third of the T1D population silently struggling with this battle, I realized there was a great need for more awareness, education and supportive resources. After two full years of solid recovery, knowing that I would never return to the addiction that had once consumed my life, I began to reach out to others who needed help.

In January 2012, I founded the organization We Are Diabetes along with my friend Erin Williams. WAD primarily focuses on supporting T1Ds who are struggling with an eating disorder and advocates for living well and living strong with Type 1 Diabetes.

The daily challenges of living with this disease, as well as the emotional and financial toll it takes, can oftentimes result in a sense of defeat or isolation. WAD strives to breach the gap between the visit to the doctor’s office where you hear the “lectures” while nodding your head in compliance and when you are sitting at home alone feeling overwhelmed and frustrated. I spent so many years staying silent about how angry I was that I have to live with this demanding disease and instead of sharing my feelings, I developed an eating disorder to cope with the loss of control that I felt. If only I had known when I was struggling that I was not the only one who lived with such shame, guilt and anger about my disease. I want WAD to be a resource for any T1D who needs to know that they are not alone.

There are still days I curse this disease. I will never be one of those people who are “fine” about living with T1D (do those people even exist?) but I know that ignoring my chronic illness doesn’t make it go away! When I feel discouraged or sad about my diabetes, I talk about it. I have been blessed with an amazing online community of diabetic friends and a supportive husband who encourages me to share my feelings. I also find that having some creative outlets have really helped me stay grounded when I feel overwhelmed. I have gravitated to different types of creative outlets through my life and value each of them for the freedom they provide me. It’s important for people living with T1D to engage in activities and hobbies that serve as a reminder that there is more to life beyond the constant testing, doctors visits and carb counting. We are more than our diabetes diagnosis!

Helping other Type 1 diabetics who struggle with an eating disorder has helped me stay strong in my personal recovery. Becoming part of the DOC ( Diabetes Online Community) has also helped me find acceptance and strength in my life with T1D. There is a noticeable difference in my outlook on living with this disease now that I have a community of support that I can turn to! Connecting with others who “get it” is the most important factor in staying positive when living with any chronic disease. If you are a T1D and you feel lost, lonely or frustrated, don’t be afraid to reach out and ask for help from the DOC!

If you or someone you know is struggling with living with Type 1 Diabetes while also battling an eating disorder or is even just exhibiting some of the signs and symptoms of diabulimia, please visit the We Are Diabetes website for more information.

 

Miss(ed) Opportunity

I like performing my diabetes tasks in public. You know why? Because I’m always hoping that someone watching will have diabetes or know someone with diabetes and they will smile and think to themselves, There’s someone out there just like me.

Miss Manners doesn’t think this. Miss Manners thinks that performing such medical tasks like testing blood sugar or taking an injection is impolite. It might offend or disgust someone. They might be afraid of needles or get queasy at the sight of blood. Well, I sympathize, because I don’t like either of those things myself! But some people in this world do what they need to do. I’m not a huge fan of crying babies or children who kick the back of your seat, but you don’t see me petitioning the airline to create no-baby planes, do you? Do you know why?

Because it would be completely ridiculous.

Miss Manners thinks that we should hide ourselves away from the poor, unsuspecting eyes of people who don’t want to see what we’re doing. But what about the people who do want to see what we’re doing? What about the people who are going to go home feeling a little less alone because they spotted someone pricking their finger at the food court or bolusing from their insulin pump? I literally get giddy when I see another PWD “in the wild.”

On a recent flight, I realized that my recent insulin pod change might have not gone very well. I woke up from a nap with cotton balls stuffed in my mouth. So I brought out my glucose meter and did a quick check. I’m not sure if my neighbor even saw the tiniest drop of blood on my pinky, but she did see the meter and she recognized what I was doing. Because her friend’s daughter has type 1 diabetes.

This led us into a lovely conversation about growing up with diabetes, what it’s like to be on an insulin pump, and an upcoming JDRF research conference in her area that she texted her friend about as soon as we landed. If I hadn’t tested my blood sugar in public, I would have missed a wonderful opportunity to spread some diabetes advocacy and education.

I would rather ignore Miss Manners than miss an opportunity to connect, educate, and inspire.

Omnipod & Freestyle Users: Test Strips Recall!

1-recall-boxAttention fellow podders!! Abbott has issued a recall for its Freestyle test strips that are used with the Omnipod PDM. According to Abbott, the strips may be reading erroneously low blood sugars. You should contact Abbott to receive a new supply of 400 test strips.

But that’s not all: there is also a recall on the strips for the Freestyle Flash and Freestyle Blood Glucose meters. So, you know, that’s awesome. The only blood sugar meter from Abbott that works is the Freestyle Freedom glucose meter. So if you have that, you’re golden. If you’re like me, you’re SOL.

I called Abbott this afternoon before going to the pharmacy to pick up my new order of test strips, so I’m glad I heard about this before plopping down a bunch of money on test strips, what with it being the beginning of the year and my deductible not being met. I should be receiving the replacement strips in 3-5 days. I don’t have another Freestyle meter, so I’m going to go ahead and use the strips because from what I can tell, it has not been negatively affecting me.

My biggest beef with this recall is how the information was disseminated. This press release came out yesterday and I found out about it today. On top of that, do you know how I found out about it? Through an email from my fellow podder, Stacey, who emailed dozens of people on the system. Not a word from Insulet or Abbott yet. So what gives? This is a massive recall for people who use the Omnipod system, and yet Insulet is completely mum on the issue. Several people in the Omnipod Facebook forum report finding out about the recall through social media.

Social media is an excellent avenue for dispersing various bits of information and to stay in touch with the pulse of the community. But when it comes to a recall that affects the health of thousands of individuals, get your collective act together, Insulet and Abbott, and send out a proper email or make a phone call. You should know better.

 

How To Participate In A Clinical Trial

When I asked you, my lovely readers, to send me feedback, one comment I received requested a post on clinical trials. Well, your wish is my command! I’d like to introduce you to Molly McElwee Malloy, a Clinical Trial Coordinator and Certified Diabetes Educator at the Center for Diabetes Technology at the University Of Virginia. Not only does she work for a clinical trial, but she is a 15-year veteran of type 1 diabetes and has participated in the artificial pancreas clinical trial.

 

A Guest Post by Molly McElwee Malloy

Molly-McElwee-MalloyHave you ever wondered what it’s like to be in a clinical trial?  Maybe you’ve read an article recently and thought about volunteering?  Let’s talk about it.  First, where do you go to find out what clinical trials are actively recruiting subjects?  Subjects, by the way, are what you are called when you volunteer for a trial.  Here’s some websites that will help you find out what’s going on.

– ClinicalTrials.gov

– JDRF’s Clinical Trial portal

– NIH’s NIDDK Clinical Trials portal

Now, let’s talk about contacting the research coordinator to find out more about the trial.  The clinical research coordinator or CRC is your liaison to the study.  They will make sure you are fully informed about the study to ensure you want to do it.  After you have mutually agreed on your participation, you will go through a consenting process that can take some time.  This is the part where if ANYTHING is remotely unclear you ask it.  There are no dumb questions!!!  You are volunteering your time and your body – it’s your right to understand each and every detail that will go on!  If you ever feel like this process doesn’t happen to your satisfaction, there is a phone number required to be on each consent form where you can report this.  Often it will be an Institutional Review Board or IRB phone number.  It is your right as a research subject to be fully informed and feel secure in the knowledge that you know what is about to be asked of you.

All clinical trials have inclusion and exclusion criteria that must be met.  There are good reasons for these conditions to protect both you and the research.  When you volunteer for a trial, you are giving your time and body for the project.  We want to roll out the red carpet and accommodate you.  Here’s the reality – clinical trials are typically funded by grants and they don’t often offer to expense your travel arrangements. Clinical trial coordinators often are juggling the schedule of the facility, the physicians, nurses and other team members that need to be present.  Lots of times all of these things bend to fit when and where subjects are available.  However, all of these things must have a compatible schedule.  I am often astounded when all these aspects align and am eternally grateful to everyone who makes it happen.  We can’t do research without you!

Once you begin there will be certain things required of you.  Just as it is imperative that the research coordinator be thorough with you and your questions, it’s equally important that you do your best to give accurate information and follow the directions given to you.  It’s truly a missed opportunity if you don’t.  Your data matters and we don’t ask for things we don’t need. Do your best to fulfill your end of the research.

In my job, I coordinate artificial pancreas clinical trials.  Before coming to work at the Center for Diabetes Technology I participated in some very early clinical trials of a closed loop artificial pancreas system.  At the time, blood draws were done IV and the system was run by a laptop computer.  My BG numbers were amazing. I remember eating a bagel and not being high afterwards (can you do that?).  It took a lot of blood draws, eating prescribed foods at prescribed times, but the results were worth it.  I got to forget about my diabetes for 24 hours.  After that I realized how much time I spent thinking about my diabetes and how much we needed a better system.  It was one of the reasons I went back to school to get my RN (and later my CDE) and started working at the Center. I want a system that gives everyone with diabetes the freedom to manage their diabetes without losing their minds.  You know what I’m talking about – managing type 1 diabetes is the equivalent of trying to hit a moving target.  You’ll get it right sometimes and other times you’ll be way off mark.  We need a better treatment option and so I’m very excited to be working on this project!

I encourage everyone who wants better treatment options for diabetes to get involved in some way to support research.  Maybe for you it’s joining a walk or volunteering time with ADA or JDRF.  One of my favorite things about the diabetes community is that we stick together and work hard for a better tomorrow.  We know diabetes stinks; we want to have the best treatment options available to make diabetes easier.  We all benefit when we work together.

 

If you’re interested in finding out more about the artificial pancreas clinical trial at UVA, for more info.

Advocacy Doesn’t Have To Be Flashy

Last week, Scott Johnson asked me if I thought on DSMA Live if it was important for people to contribute their voice in the vast sea of voices in the Diabetes Online Community. Over the weekend, Sarah from Sugabetic tweeted, “I don’t know what my place is or if my voice is even needed anymore. My goal has always been to make a difference, but I don’t think I am.”

Cue the heart breaking.

I’ve heard this before. In fact, I’ve heard this come out of my own mouth. With so many people now involved in the diabetes community, and with so many amazing diabetes advocates doing really big, bold things to raise awareness, it’s easy to discount our own contributions. That what we say and share about our own experiences don’t really matter in the grand scheme of things because look at everybody else. It’s easy to start doubting your own worth in a community when some people are chosen over others to travel and speak, or write a book or an article. You start wondering, is anybody listening? Does what I do have value? Or if you haven’t started anything, you might wonder, should I even try? What can I do?

And to these people, I want to wrap you up in my arms and give you a great big hug. And then I want to step back, take you by the shoulders and give you a big shake while yelling, “Knock it off!”

Sorry. I can be a little aggressive when I’m passionate about something.

One voice does matter. While we all share the experience of having to prick our finger, or count carbs, or deal with nosy friends and family, we all come up with our own idiosyncratic “life hacks” for managing diabetes. Sharing these hacks are what makes the diabetes community so powerful and why it’s so important to be connected to others. These diabetes life hacks are not something that your endocrinologist or diabetes educator can tell you (unless you are blessed with one who has diabetes). But even then, they won’t know everything there is to know about coping with diabetes in daily life. Why is your voice important? Because it’s your voice.

An example of this is a recent conversation on a Facebook group for females with diabetes, where the topic of dealing with diabetes on your wedding day came up. Before I even had a chance to join in, there were nearly a dozen comments and nearly every comment said something a little different. That’s why each voice is important. Because even though we are all experiencing the same obstacle, we all have our own tricks and tips for overcoming them.

I think there is a preconceived notion about what diabetes advocacy actually is. We see the “movers and shakers” around the diabetes community putting in so much time and effort into their projects that we start wondering how they find time to sleep. These are amazing advocates — many of them are personal friends — but at the same time, it’s easy to think that what we do doesn’t really matter because look at them, look at what they do! Those are the real advocates, right?

Wrong!

Being a diabetes advocate means making a difference in the life of someone with diabetes. There’s no qualifier on that. It doesn’t have to gain media attention. It doesn’t have to require traveling to another country. Heck, it doesn’t even have to involve talking to people outside your own family and friends. Anything that helps spread knowledge about diabetes makes you a diabetes advocate and it matters. It matters because without you, that person would have continued living in ignorance, or isolation, or despair. If you make a difference to even one person, that matters.

Diabetes advocacy doesn’t have to be flashy. All it needs is you and some investment into helping another person know a little bit more about diabetes. If you do that, you’re a diabetes advocate.

Welcome to the club.