Keep it to yourself: A Diabetes Blog Week Day 2 Post by Kelly Griffin
I put out the word on episode 15 of my podcast... If anyone in the diabetes online community didn't have their own blog and wanted to participate in Diabetes Blog Week, I'd host their blog post here on Arden's Day. Almost immediately, Kelly Griffin emailed me to say that she wanted to contribute a post. Initially Kelly considered writing anonymously but late yesterday she decided to not just attribute her name, but also her face to her writing. Kelly may not have been completely "out of the shadows" when she wrote this blog post... but she certainly is now! Please help me welcome Kelly into the light... - Scott
Keep it to yourself...
Thank you, Scott Benner and Karen Graffeo, for giving me the opportunity to write about a topic that seems to define my life with type 1 diabetes. To give a brief history, I was diagnosed with type 1 diabetes about 13 years ago. It was a puzzle to my doctor at the time, who assumed because I was in my mid 20's, I must have type 2. It was actually the CDE (Certified Diabetes Educator) who determined that I was mostly likely a type 1 in a “honeymoon” phase. She turned out to be correct, and I quickly found an endocrinologist who helped me move to MDI.
That was a time of significant transition in my life. I had been a professional student since undergrad, and was about to move to New York City to pursue a performance based career. When I shared my diagnosis with some people in the industry, I was quickly told to keep it to myself. They cared about me, and worried I might be looked at differently, or miss opportunities because I would be perceived as ill or somehow incapable. I didn't question it. Be it right or wrong, that was the way it was, and I adhered to that. I worked very hard to make sure that no one knew about my type 1.
I spent my whole life studying and preparing for this career, and I couldn't let my diagnosis become an issue now.
Since diagnosis, I have been in pretty tight control of my diabetes, but at one visit I expressed frustration to my doctor about the amount of injections that I was giving each day, and that it was becoming harder to explain my trips to the restroom before every meal. For years, my endocrinologists have wanted me to be on a pump, but I refused because I couldn't image how in the world that would work in a quick costume change backstage. I could have several people helping me in and out of complicated clothing. Where would the pump go? How could I do this so that they wouldn't know?
Now that I think back on it, that was my first glimpse into the DOC (Diabetes Online Community). I found forums of people talking about this “tubeless” pump. I started looking into it, and thought that might just work. I could easily hide it under a camisole while in a stage production, and no one would ever know. So, I started pumping with the OmniPod about 8 years ago, and have been using it ever since.
Secrecy has its burdens.
Kelly Griffin
The longer I live with T1D, the more I feel the need to talk about it with someone. I need community. When you are diagnosed as an adult, you never have the experience of anyone else taking care of you. I know this is naïve, but I sometimes envy hearing about people diagnosed as children. I wish that my family knew what I deal with on a daily basis, and how hard it can be to stay in control. I have been the only one in my world who knows what I am going through.
It was 13 years before I met another person with type 1. I actually saw an article about this woman in a local publication, and semi-stalked her on Facebook until we were able to meet for coffee. It was the most amazing experience to sit down with someone who pulled out a pump that was “alarming” during our meeting. I am not the only one? So, I'm not the only one who sits with one arm digging into my abdomen for 3 hours in a live theater performance trying to muffle the sound of my pod beeping away? I'm not the only one who tries to discreetly light up my Dexcom screen in a movie theater to check my numbers? I'm not the only one who sits in fear of my Dexcom vibrating during church every Sunday?
That meeting was so incredibly freeing, and it left me wanting more connection. I quickly delved into the DOC at that point. I found Scott Benner, Diabetic Danica, Kerri Sparling, and Cherise Shockley, to name just a few. Most of these people have no idea who I am, but I feel like I have community through their efforts, and I cannot express my gratitude enough. I am amazed at the strength I see in the DOC. The women, men, and children, who proudly display their pumps with or without tubing, check their blood sugars in public places, and post online without reservation or worry about what their professional colleagues might think. Those of you living boldly and out loud, inspire me.
I am choosing to walk out of the secrecy a little bit at a time. I'm not completely out of the shadows yet, but I'm working my way there. I see that I have to be bold if we're ever going to find a cure. I have to find a way of being comfortable speaking up. This is my first step, and I thank you for the opportunity.
-Kelly Griffin
What a wonderfully honest and brave post from Kelly - bravo!
Remember, anyone that wants to write for blog week and doesn't have an outlet for their words only needs to email me - I am happy to give your writing a home. - Scott
Diabetes Blog Week Day 1: I Can...
I can...
Diabetes Blog Week begins on Monday, May 11 and runs until May 17. The day one writing prompt is, "I can...".
I realized last week while talking to the creator of Diabetes Blog Week, Karen Graffeo for the Juicebox Podcast that I can help people in the diabetes community that want to share their thoughts during blog week... but don't have a blog.
With that in mind - If you are a person who lives with diabetes, or you love someone that does and you don't have a blog... I'm excited to offer Arden's Day as a way for your words to find their way into the community.
If you are interested in publishing your diabetes blog week writing on Arden's Day contact me by email and we'll make arrangements for your post to be featured during blog week.
I can help the diabetes community to grow...
My conversation with Karen Graffeo is available now on the podcast. You can listen to the Juicebox Podcast here, on iTunes or with your favorite podcast app. Karen's episode started out as a conversation about Diabetes Blog Week but quickly grew into a discussion about what it was like to be a child with type 1 diabetes over thirty years ago. I think you'll love hearing Karen talk about growing up with type 1 diabetes, how she imagined blog week and much more.
Share your life with diabetes today. Your transparency will help others in ways that you can not imagine. You can find out more about blog week and add your name to the participant list here.
JDRF Announces $1.8 Million Two-year Partnership with Lilly to Provide Support for Newly-diagnosed Families with Diabetes
from PR Newswire
NEW YORK, May 6, 2015 /PRNewswire-USNewswire/ -- JDRF, the leading global organization funding type 1 diabetes (T1D) research, and Eli Lilly and Company, a global leader in diabetes care announced a two-year partnership that will provide $1.8 Million in support of JDRF's mission to improving the lives of people with T1D. This agreement provides a variety of programs and resources that can help people overcome the daily challenges of managing diabetes. Lilly Diabetes has been a generous JDRF corporate partner since 1997 when they began supporting their local Indiana State Chapter. They have been a national sponsor of JDRF for the past four years.
Dealing with a Severe Adhesive Allergy
That’s Not Just Contact Dermatitis
This is a guest post from a D-mom named Rachel Morgan who was a recent guest on my podcast. At one point we spoke about her son Henry's severe adhesive allergy and I asked her if she would be interested in contributing a blog post on the subject. I think you'll agree that Henry's situation was dire and that his mother's insistence on finding an answer that would allow him to continue to use his diabetes technology, is nothing short of impressive.
Henry's back. Click to enlarge
Living with diabetes means you get gut punched several times a week, whether it’s a bad low, an out of control birthday party complete with grocery store cup cakes, chips, soda, and pizza, or simply watching your sleeping child hold out his finger for a 2 am BG check. Our three year old son, Henry, was diagnosed in March of 2014 and by late May he was on an Animas pump and Dexcom. With these tools in place, we felt some of the control diabetes had devoured starting to return. We could see what a long car ride did to Henry’s blood sugar, so we increased his basal by 30% and had perfect numbers on a 15 hour car ride. Double arrows down caught a scary low of 48 on a hot August day at the zoo. Then all the sudden, we were double and triple gut punched in October of 2014 when this happened.
Within 48 hours the reaction became systemic. Click to enlarge
Henry developed a tape and adhesive allergy and within 48 hours the reaction became systemic.
Click to enlarge
Type 1 is an autoimmune disease, and Henry also developed a severe tape and adhesive allergy. His primary care physician and Endo were worried about anaphylactic shock; he was given oral steroids (hello, high blood sugars!) and a horse load of Benadryl, and we were told to stop using devices with adhesive and go back to multiple daily injections (MDI). We took the Dexcom off but we wanted Henry to stay on the pump for the benefit of his long term health. I became that mom. I scoured the internet and made an insanely detailed power point, which I sent to every medical professional who would listen. I researched colostomy care because I felt we were really dealing with skin breakdowns and wound care.
I found a CDE through Children with Diabetes who lectures on tape and adhesive allergies, and she called me back that night, and a few days later some of her personal T1D supplies showed up in our mailbox, and with a few more phone calls, research, and a little trial and error, here’s what we do to prepare a pump site.
Click to enlarge
- Wash area with warm water and antibacterial soap— Do not use alcohol
- Completely dry the area
- Apply one puff of Flonase (sweet-talking or demanding this prescription from Endo or PCP is necessary)
- Apply thin layer of Cavilon barrier cream (Amazon)
- Apply a 6cm X 7cm layer or Tegaderm HP 9534HP (NOT Tegaderm!!) Check with your pump supplier— some insurances cover this and it’s shipped with pump supplies. You can also purchase Tegaderm HP from Amazon.
- Place inset through Tegaderm HP
- We place another layer of Tegaderm on top to secure the pump site and provide an extra layer or barrier for the adhesive of the detach inset
- When wet, blow dry site with hair-dyer on a cool setting
- Apply prescription Hydrocortisone after removing the Tegaderm HP and old site
- Remove any extra adhesive from the old site at bath time with calendula oil
A rashless, T1D strong Henry today!
The wounds eventually healed after six months. I’ve heard some people describe these wounds as burns, and the skin damage is extensive. Henry’s skin is finally healed, and we’re about to try Dexcom again, using the above preparation method, but with a hydrocolloid barrier, like Johnson & Johnson Tough Pads, sandwiched between the layers of Tegaderm HP. I’ve read about people successfully using Duoderm and blue tape, a kind of baby tape used in NICU’s, as a barrier and adhesive method, but we have yet to try these products.
Being a T1D parent is really difficult, so I’ve learned to find joy in the small victories, like staying on a pump. We’re taking it one number at a time and moving forward.
You can listen to my conversation with Rachel right here in this post, on iTunes, Stitcher, at JuiceboxPodcast.com or with your favorite podcast app.
The insulin bottles pictured in the header of this blog post are from the first eight months of Henry's life with type 1. Rachel knitted a heart for each... If you have questions about the process Rachel described in this post, you can contact her here.
Sometimes Your Blog Makes Me Feel Like a Failure
A long time ago on a blog far far away lived the father of a little girl who has type 1 diabetes...
Many years ago during a conversation with a fellow diabetes parent named Michelle I learned something about my blog that I was painfully unaware of... "Sometimes", Michelle told me, "Sometimes your blog makes me feel like a failure". This was of course, not my goal.
I was crushed because it wasn't Michelle who failed, it was me
Michelle and Mason
Michelle went on to share with me that while she enjoyed Arden's Day and found it to be refreshing and honest, it felt like my writing focused more on what went right with diabetes and in fact that the lack of relatable 'diabetes fail' conversations left her feeling as if everyone was 'succeeding' but her and that she was failing her son Mason.
I took her words to heart
I spent the next few days rereading my own blog and I could see what Michelle was talking about. I wasn't purposely just talking about the 'good stuff' but my attempt to be positive for the community was definitely coming off slanted in that direction. So I changed how I share online with Michelle's brave words as my guide. The adjustment was difficult in many ways but also incredibly rewarding. Anyway, that was a long time ago and today I pride myself on how honest and completely transparent this blog is - Not only is Arden's Day now a complete reflection of my life with type 1 diabetes but I've seen the power of sharing the good and the bad and how it has helped to buoy other families in their times of trouble.
I owe all of that, to Michelle Golladay and she is this weeks guest on the Juicebox podcast.
As you listen to Michelle and I talk about parenting and diabetes she'll spend a few moments telling me about a Parent Advisor Program that she has helped to set up at the Akron Children's Hospital - bringing the DOC IRL! I've included links here and in the show notes of the podcast, local Ohio residents and those interested in learning more should check them out.
You can listen to our conversation right here with the embedded player, on iTunes, Stitcher or your favorite podcast application.