I’m 18 months into my doctoral program, and so far so good. It still feels like an eternity until I’ll be done… hoping for 2015, but more likely, I’m guessing 2016. Either way, I’m trying to not focus too much on when I’ll be done with the program, and looking more short-term at completing each assignment and project as they’re due. The big project I will tackle beginning in the fall is my dissertation, but before that, I have to complete a smaller research project, a pilot study, which will be the foundation for my dissertation.

When I decided to return to school, I knew I wanted to study diabetes and art therapy, but was unclear about what direction to go until last spring when I committed to researching diabetes and eating disorders. As someone who is recovered, I have years of experience attesting to lack of knowledge, awareness and sensitivity, insufficient treatment options, and what I have often perceived as an utter disregard among too many healthcare providers for just how easy it is to get all screwed up over food and body image when you have diabetes. I now feel a moral, ethical, personal, and professional obligation to address those problems I experienced as a patient, problems that too many other people with diabetes have also experienced, problems that are preventing many people from overcoming the food and body issues that plague them.

That brings me to my pilot research project: VIAL Project.

VIAL is an acronym for Voice ~ Insulin ~ Art ~ Life, and VIAL Project combines some of the building blocks of my diabetes advocacy work – social media, creative self-expression, and food and body issues – into a social networking website for people with type 1 diabetes, and food and body issues to share original, arts-based work (art, photography, creative writing, video, etc.), and connect with each other online. Because this is a research project, I will be collecting and analyzing user-submitted content, including all creative expression, posts and comments, to identify themes that emerge. My objective is to increase understanding of website users’ experience: having type 1 diabetes and food and body issues; creating and sharing arts-based work on the website; and using a social media platform to connect with others who have type 1 diabetes and food and body issues.

For the sake of this project, food and body issues cover a range of behaviors and experiences, including: overeating; stress eating; eating to avoid hypoglycemia; insulin omission or manipulation; restricting food; feelings of dissatisfaction, anxiety, anger or depression about one’s body; anxiety about food; binging; purging; use of medications such as diuretics, laxatives or weight loss supplements (not approved by a healthcare provider). Food and body issues can be mild to severe, including: behaviors and feelings connected to food and body image, causing mild to moderate psychological distress, with minimal interference with one’s daily functioning, possibly affecting diabetes management; disordered eating that is more significant, causing some disruption to daily functioning, affecting diabetes management, and posing some health risks; clinical eating disorders, diagnosed by a mental health professional.

If the results of this pilot research are promising, it is my goal to develop my dissertation research based on the results, and continue using the website as a platform for conducting research. The research on diabetes and eating disorders has grown over the years, but there is so much room for new understanding, and a great need for investigation into how to help people.

It is also imperative that more is learned about how to reach and engage people with type 1 and food and body issues because the shame and distress they experience can lead them to isolate themselves, avoid healthcare providers, and be secretive about unhealthy food and diabetes management practices. This is actually one of the primary reasons I wanted to create a website for my research, as opposed to doing more traditional clinical research with participants in person. I hope those people who might be reluctant to participate in research in person, might be more willing to participate online. I hope my research will offer new insight into these areas of need, in addition to shedding light on the qualitative experience of individuals with type 1 who struggle to make peace with their body and food.

Since my data will consist of user-submitted content, without content, I have no data. Without data, I have no research, and without research, I will have to shift the direction of my doctoral work. I am very passionate and invested in studying this topic, and I believe there is great potential for this research to not only help people in the long term through development of interventions, but more immediately, I think a dynamic community that encourages and promotes the use of creativity to cope with the difficulties of having type 1 diabetes and food and body issues could potentially benefit users of the VIAL Project website.

The success of this project depends on people registering and participating on the website, so I’m looking for the DOC’s support and help with their wildly effective viral power. First, if you have type 1, you are at least 13 years old, and you have any food and body issues, as described above, I hope you will register as a user, and participate on the website. If this doesn’t describe you, but you know someone who might be qualified, I hope you will share the project information with them. Lastly, regardless of whether or not you feel like the site might be helpful for you, I hope you will share the information because maybe one of your FB friends, twitter followers, blog readers, or other DOC connections are struggling to some degree, and this is a resource they can use. In addition to the actual project website, VIAL Project also has a presence on Facebook and twitter, which isn’t much to see yet, but in time, I hope they’ll be a reflection of the activity on the website.

I have until late spring to collect my data, which isn’t a generous time frame to build a social network, so I’m reaching out to anyone and everyone I know to put this on the fast track. The more people that register and use the site by late spring, the more data I will have to support my more in-depth dissertation research. The getting-started, getting-people-interacting, and getting-people-making-and-posting-creative-work parts of this project are going to take a big push, but I hope that if you join me in promoting this research, the website will come to life, my research will come to life, and in time, each person who is struggling with type 1 and food and body issues can create the healthful life they deserve.

VIAL Project: Voice Insulin Art Life

Informed Consent

Like all research, the protection of participants is my priority. If you are interested in joining the site and participating in the project, you are strongly encouraged to carefully review the Terms of Service on the website, which include Informed Consent. By joining the site, you are agreeing to the Terms of Service and providing Informed Consent. By agreeing to the Terms of Service, participants understand that:

• I am volunteering to register and participate on a social media website with a focus on creative expression for people with type 1 diabetes who have disordered eating behavior.

• I will be submitting original, creative works that reflects my experience with diabetes and/or food and body-related issues.

• I am responsible for protecting my identity when submitting public content on the website, including, but not limited to profile photo and username, to the extent that I want to remain anonymous.

• User-submitted content, including posts, comments, profile information, visual artwork, creative writing, audiovisual materials will be used anonymously for purposes of supervision, presentation and/or publication.

• Participating on the website may bring up feelings, thoughts, memories, and physical sensations, either comforting or uncomfortable. I can participate on the website to whatever degree I am comfortable. If I experience significant emotional distress, I know that I can refrain from using the website. If my emotional distress is severe and I feel I am in danger, I have been advised to contact local emergency services in my community.

• This study may or may not benefit me. I may experience increased self-knowledge and personal insight that I may be able to use in my daily life. The results of the study may also help to increase public and professional awareness of the needs and experiences of people with type 1 diabetes who have disordered eating.

• All confidential information collected at registration that is not public will be kept on a password protected computer in the researcher’s possession for possible future use. However, this information will not be used in any future study without communication from the researcher and my electronically submitted consent.

• The researcher/therapist is ethically bound to report, to the appropriate party, any criminal intent or potential harm to self.

• I may choose to withdraw from the study at any time with no negative consequences.

It’s the 3rd annual Diabetes Art Day! When I started Diabetes Art Day, I didn’t expect people to be as receptive as they have been. I figured it would be a one-time event, and crossed my fingers that a few people would participate. Here we are two years later, and it’s an annual event, with participation beyond anything I could have imagined… and I’m a very imaginative person. The first year, there were about 80 participants, last year there were 172 images submitted to the Diabetes Art Day 2011 Gallery, and this year, it looks like a lot of new people are joining.

Diabetes Art Day would be nothing without the DOC, so thank you to all who participate – those who’ve participated in the past, and helped make it what it has become, those who are new to participating, and those who have helped spread the word to get more people involved. With all my heart, I believe that art has the power to heal and connect us, and for the third year in a row, I’m excited to see the healing and connection in action. It brings me great joy, so thank you!

Last year, I started an altered book project for Diabetes Art Day, recycling an old diabetic cookbook, with plans to transform it into something more useful because I think diabetic cookbooks are lame. I didn’t get to work on it as much as I hoped, but here is one page of my book that I did recently. I took the copy from an ad for One Touch strips that kind of annoyed me, and I edited it to reflect my experience with diabetes.

Below that is a painting I finished a couple of days ago. Actually, it might not be finished, but for now, I like it. I’ll look at it for a few days, and maybe I’ll tinker with it some more. I didn’t plan to share a painting for Diabetes Art Day, but after I worked on it on Friday, I decided I would post it because there was something about it that just seemed right.

To see more Diabetes Art Day artwork, please visit the Diabetes Art Day 2012 Gallery.

"I Am", collage in altered diabetic cookbook

"Vasculature", acrylic on canvas

For a long time, the diabetes world has been challenged to agree on a color/symbol. Are we represented by a blue ribbon or a blue circle? Are we represented by a gray or silver ribbon with a red dot or a red drop of blood? Are we represented by red because it’s the color of blood and the ADA? Only a couple of years back, I saw an online poll soliciting suggestions and votes for a color to represent diabetes. There were votes for yellow, some for teal, some for lime green, a few for the rainbow. I shook my head wondering how we were ever going to accomplish what pink has been for breast cancer because, while it has its faults – pink KFC buckets are always a great example of how pink has gone a step too far – the diabetes awareness effort needs to aspire to that level of recognition.

Raising awareness is very much about public relations, and marketing a busted pancreas in November after everyone has been smothered in boobies and drenched in pink during October is not exactly an ideal position to be in. That’s a challenge for us, but it doesn’t change the fact that diabetes needs more love and recognition than it’s historically received, especially because it affects and kills a lot more people.

In an effort to be more widely recognized, over the last year, the DOC has adopted the blue circle, as evidenced by the support of initiatives like Blue Fridays and the Blue Heel Society, but only a year ago, there were still lingering doubts about how the DOC could symbolically represent itself in an easily identifiable way that would raise awareness for diabetes. Last year at the Roche Diabetes Summit, we broke into small groups to discuss issues and strategies relevant to the larger diabetes community, and one of the issues we addressed was how to resolve the color/symbol issue.

I advocated for the blue circle. I’ve been a fan of it since I started participating in World Diabetes Day a few years ago. It’s simple, and it’s different from a ribbon which sets it apart. I like that it represents unity and the community of people affected by diabetes around the world. I like that it has global power because it originates from the International Diabetes Federation. That was only a small part of the Diabetes Summit, but I believed the color/symbol problem was one we could do something about, and I appreciated that Roche structured the time so we could have small group discussions, in person, about this and other issues relevant to the DOC and the larger diabetes community.

The summit ended. I came home. The details of the color/symbol discussion faded, but the overarching idea that we needed to use the blue circle and advocate for its use by the broader community stayed with me. Incubating. Stewing. Percolating. Summer passed. Fall was upon us. Diabetes Awareness Month and World Diabetes Day were fast approaching. I wanted to do something meaningful with the blue circle that allowed for wide participation. Then the idea came to me, the World Diabetes Day Postcard Exchange, an idea that emerged from that opportunity to gather around a table with other diabetes advocates to flesh out the color/symbol problem and how to address it in a way that benefited the entire community.

Except for the first year when I was spazzy excited just to meet so many people from the diabetes social media realm, and frankly, shocked that I was even invited, I think this is the first time I’ve mentioned something substantial here about my participation in the Roche Diabetes Summits. There were a lot of hurt feelings in the DOC that first year, and ever since, there seems to be negative energy about these kinds of events in the online space because of the inclusion of a few and exclusion of many. I get that. I feel fortunate to get invited to some things, but I don’t get invited to everything. Logically, I understand that companies and organizations have valid reasons for inviting some, but not others. I also know being excluded doesn’t feel good, especially when you believe you have something unique and valuable to contribute, and ultimately, I think we all have something to contribute because no one’s experience with diabetes is any more or less valid than another person’s. Understanding that people’s feelings get hurt has made me reluctant to share much about the events I attend, so for the most part, I’ve chosen not to blog about it.

Another reason I haven’t blogged about Roche – or Medtronic – is because nearly everyone else who attends writes a synopsis, and anything I could add would be redundant. I don’t want to be redundant, which has a lot to do with why I only blog on occasion. I figure one of the reasons I don’t get invited to some events is because I don’t blog very often, but most days, I don’t have anything to say that is worth clogging your Google Reader. I don’t just want to be a part of the conversation; I want to add something valuable to the conversation. In the spirit of conversing, I certainly like when people read and offer comments, but that’s more of a bonus than the end goal for me.

Despite my sporadic blogging and practically defunct Twitter account (sorry, I got bored and it’s too much effort to keep up), I was invited to Roche again this year. Like the last three years, you likely won’t get a recap from me because I know my peers will do it better justice than I would. Just because I don’t post a report or blog much at all, doesn’t mean I’m a seat warmer with a familiar face, invited simply because I’ve been invited every year. Thankfully, blogging and tweeting aren’t the only ways to measure activism, success, dedication, and investment in diabetes social media. Blogging gave me a good running start, but I needed to stop just talking about what I wanted to do, and actually do it, so I’ve worked to find ways to combine art and diabetes to help people, build community, and raise awareness, including Diabetes Art Day, the World Diabetes Day Postcard Exchange, as well as multiple offline endeavors like the Diabetes Art Studio I’ll be facilitating at the Children With Diabetes Friends For Life Conference in a couple of weeks.

More and more, I don’t think the “blogger” label applies to me because that’s not my focus. It doesn’t capture what I contribute or describe my role in diabetes advocacy. I enjoy crafting something with language that people want to read, but art is my first love. Art is the universal language, and I think art and other forms of non-verbal creative expression are a grossly untapped resource for the global diabetes community. I’m going to do everything I can to facilitate harnessing the power of art to make a better world for people with diabetes, and attending the Roche Summits helps me do that. When we talk about who brings what to the proverbial table, that is what I bring.

Maybe you’ve been to the Roche Summit, maybe you haven’t, but regardless, if you participated in Diabetes Art Day or the Postcard Exchange, or even if you’ve visited the website or Facebook page of either to see what people have created, you have benefited from the Roche Diabetes Summit because Diabetes Art Day and the Postcard Exchange emerged from it. My hope is that attending the Roche Summit will again lead to collaborative creativity that expresses something about diabetes that can’t be written or said. I have big ideas for my next diabetes art initiative, ideas that require resources I don’t have, ideas that are meant to benefit all of us, and my promise to you is that I’ll use my participation at the Roche Diabetes Summit to promote and develop art initiatives that aren’t just for the short list of attendees, but for everyone.

Last October, I created the World Diabetes Day Postcard Exchange hoping for maybe 100 or 150 participants. There wasn’t anything too fancy about it. People found out thanks to the magic of social media, and emailed their name, address, and details they wanted taken into account when I matched them to a postcard buddy. I entered each participant’s information on a spreadsheet, and manually matched them based on age, type of diabetes, gender, number of years living with diabetes, and relationship to diabetes (self, parent, sibling, spouse, child, friend, aunt, etc.). I flagged emails in my received box so I knew who was entered on the spreadsheet, if I needed to send a follow-up email, if I had emailed their match to them. I’m not very good at planning and organizing, so it was a very dynamic process of refining what I was doing as I went along. As the number of participants increased, I developed a system for responding, sending confirmation emails, sending postcard buddy names and addresses, and following up. In the end, an astonishing 529 people signed up, far beyond my expectations, so it was an absolute miracle that I pulled it off.

Since it was the first year, and far more people joined than I anticipated, it was not without glitches. Not surprisingly, some postcards got lost in the mail, but the bigger problem was people not sending postcards at all. I did my best to rematch people who didn’t receive cards with people who volunteered to make extra cards, but in the weeks after World Diabetes Day when this was proving to be an issue, Jason and I had a long anticipated vacation, I was trying to finish my school work before the semester ended, and we had just gotten a new puppy, so I was completely overwhelmed trying to multitask. I was literally sick to my stomach and losing sleep trying to respond to people who were emailing me to say they still hadn’t received postcards, contact those people who seemingly hadn’t sent postcards, and reach out to anyone who was willing to send extras. There was also understandable disappointment from people who received store-bought postcards in a handmade postcard exchange to which all I could do was apologize because I felt like I should have been clearer that postcards were to be homemade. I wanted everyone to have fun and enjoy it, so I felt personally responsible when that didn’t happen.

I still feel terrible that not everyone was satisfied with their experience, so I’ve been working to make improvements. I hope this will eliminate or at least minimize the things that went wrong last year. There is a dedicated website now, www.wddpe.com, so all the information about joining is in one central, easily navigable location. Instead of having to manually enter everyone’s information onto a spreadsheet from emails, there is an online registration form that automatically puts everything onto a spreadsheet for me. There is an online gallery on the website with public image uploading so everyone who makes or receives a card can post a picture and browse images of others’ postcards.

There are some other improvements I hope to make, but they are contingent on receiving a Seed Grant from Diabetes Hands Foundation. This grant money will go towards stipends for two people to help me communicate with participants. While the manual work of entering data on the spreadsheet is now automated, each person who registers still has to be emailed a registration confirmation, and once everyone is matched to a postcard buddy, the name and address of that person needs to be sent to them. I expect there will be a need to follow up with some people too. I desperately need help with this part of the project, and I would like to be able to compensate the people who help me.

If I receive the grant money, I also plan to promote this project. I’m excited that as of today, 99 people have already registered, as many as I had hoped would join last year, and it’s only June 15th… but we can do better! For as much work as it is on my end, I believe this project has great value to those who join. There is value in the self-expression that goes into making the postcard. There is value in connecting with people. We connect with people in the DOC, but there are so many more people out there, and I want to find a way to reach some of them. Sending mail is old-fashioned, but I think those who received a postcard in the Postcard Exchange in 2011 can attest to the magic of receiving a piece of snail mail, made and mailed by another person in the world who “gets it”. Should I receive the grant money, I will spend some on Facebook advertising. I am already ordering promotional postcards to take the the Children with Diabetes Friends for Life Conference in Orlando in July, and if I receive the grant money, part of it will compensate me for the cost of the postcards.

To win the grant, I need your help though. Please watch the Vimeo video about the project. Please click “Like” (you need a Vimeo account to “Like”, but it’s easy to make an account). Please click “Share” and share the video to Facebook, Twitter, Google+, and Pinterest (you don’t need a Vimeo account to “Share”). Each “Like” and “Share” count as a vote, and if the World Diabetes Day Postcard Exchange video receives enough votes, I will receive the grant money and be better able to grow and improve the project, connecting more people with diabetes with each other, and making it a better overall experience for participants.

Today is the LAST DAY to vote, so please don’t hesitate! “Like” and “Share” today!

The first time I signed up for a blogging event, one that stipulated I blog every day for a month, I succeeded. Since then though, every time I sign up for any sort of blog-everyday-for-however-long event, things unravel quickly. Most recently, and most lamely, I signed up for WEGO Health Activist Writer’s Month Challenge in April, and completed a total of zero posts. I knew going into it that I wouldn’t be able to blog every day, but I had thought I could at least do a few days. Not impressive, I know, unless you’re impressed by complete hang-my-head-in-shame failure.

Blogging everyday for a month is clearly not for me, but blogging every day for a week is something I think I can manage, and potentially accomplish, so I signed up for the 3rd annual D-Blog Week, which starts today. D-Blog Week is organized by my dear DOC friend, Karen at Bitter-Sweet Diabetes. I love to support my DOC buddies (especially Karen!), and I love how D-Blog Week is a great opportunity to connect and share above and beyond the usual DOC activity.

Today’s prompt is as follows:

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today!

Needless to say, one of the reasons I haven’t been completing blogging events is that I don’t blog much anymore. I’ve transitioned the focus of my online diabetes advocacy work to Diabetes Art Day and the World Diabetes Day Postcard Exchange, partly because I don’t have much to say anymore that I haven’t already said, and partly because I think those are more unique ways I can contribute to the DOC. I like having this space to write an occasional post when I feel inspired though, as I did yesterday, but I can’t do this regularly anymore, and won’t even pretend otherwise. I’m really grateful that some people still like to pop by and read when I do post though because even though I don’t say much here, it’s nice that people are still willing to listen.

Unfortunately, my D-blog reading has become almost as disappointing as my D-blog writing. In my experience, twitter is the best way to discover new blogs, but my tweet action is sporadic. I join #dsma chats when I’m able, but it’s very infrequent that I pop on just to tweet it up. What can I say? Twitter is a lot of work, and when I used it effectively, if you want to call it that, it was a massive time sink. I simply can’t do that anymore which means I’m not “meeting” new DOC’ers like I once did, and I’m not discovering new D-blogs.

I’m not even good at staying on top of the blogs I used to read regularly. My system for blog-reading these days generally relies on people posting links on Facebook. If there’s a link to a blog post in my newsfeed that catches my eye, I’ll go read it. I know it means I miss a lot of great blogs, so it’s far from perfect, but my “Facebook system” works for me better than driving myself nuts trying to read every single diabetes blog. As you can imagine though, my system is not especially conducive to finding new blogs.

So it comes down to this. I don’t have a diabetes blog friend to share with you, at least not one you don’t already know. Maybe I’ll discover some this year as a result of D-Blog Week that I’ll be able to share with you next year. For now, I’m going to go a little rogue, and share some fun art-making blogs with you. I know that’s not the assignment, but perhaps you’ll find some inspiration there, inspiration that you can use to help you with your Diabetes Art Day project or your World Diabetes Day Postcard Exchange postcard (it’s never too early to start!). If you ever have the opportunity to do creative projects with kids, maybe you’ll find some ideas to have a fun art-a-palooza. Maybe you’ll get inspired to do something creative just for the sake of your own personal creative growth. Maybe you’ll have a diabetes-themed spark of creativity that you’ll share with me so I don’t feel quite so terrible about taking liberties with the D-Blog Week prompt today.

PaintCutPaste and PaintCutPaste on Facebook:
A super neat website by an art therapist and mom who shares art projects that are fun for kids and adults. From her site:

“my initial goal for this site is to share with parents, caregivers, and teachers various ideas for creative activities to do with kids. as this blog grows, it expands to include ideas to nurture the creative drive that lives within each of us, as well… our kids help us to remember how much fun playing with art can be, and sometimes it’s fun to take your turn with the paintbrush or sewing needles! i hope this site brings you and yours inspiration and plenty of beautiful paint cut paste messes!”

Art Journaling as a Creative Process and Art Journaling as a Creative Process on Facebook:
This site hasn’t been updated in about 6 months, but the posts conveying the benefits and describing techniques of art journaling are timeless. Have a look through the archive, and discover the true magic of this art form. I love this site, and offer it as a resource to the students in my Intro to Art Therapy course, so now I suggest it to you too. As a bonus, most of the techniques are very adaptable to postcard-making… just sayin’…