Guest Post: Kickstarter for Pumpstash, Shorts for Pumpers!

shorts photo

By Corrine Logan

When I was 6 years old I first started on the insulin pump. It made my life (and my parents’) so much easier. I could eat whenever and whatever I wanted and didn’t require as big of a bag wherever I want. One thing that quickly became a problem, however, was keeping the insulin pump in place. It was just too heavy for my little 6 year old body and was always falling off and ripping sites off.

Flash forward 14 years, and I am now 20 years old and the pump still makes my life so much easier. It makes diabetes so much more manageable, but it still gets in the way. While working out and wearing dresses, figuring out where to put my pump becomes an endless dance of sticking it one place, having it fall out, sticking it somewhere else, again and again.

2014-11-14 13.11.52I’ve realized I am not the only one with this problem, which is where Pumpstash comes in. Pumpstash shorts  and spandex shorts designed to hold an insulin pump (and CGM, and phones etc) with the option of a front or back pocket to keep them safe and out of the way.

This is fix to a minor solution in diabetes, but I also want to help support finding solutions for the biggest problems, so 10% of all proceeds are going directly to the Juvenile Diabetes Research Foundation in their pursuit of finding a cure.

Pumpstash is currently running a Kickstarter campaign to raise money for manufacturing. We need to raise $5000 by June 18th, and have already raised over $3000. Please check out our campaign to help us reach that goal. Find out more information about Pumpstash at www.pumpstash.com.

Getting a Handle On Food, Fitness & Type 2 Diabetes

The American Diabetes Association is famous for the Tour de Cure bike series, and now they have launched a new series just for women! The first ride is this Saturday, September 13 in Southern California, and the next one will be on Sunday, October 26 in Northern California. Their goal is to get more women on bikes while also supporting the ADA’s movement to Stop Diabetes. 

Sharon Steele is the Chair of the 2014 Northern California event. Her mother and several members of her mother’s family have type 2 diabetes, and with her increased risk, Sharon set out to reduce her weight and achieve an active lifestyle in hopes of preventing type 2 diabetes. Sharon has already lost 93 lbs and is just 20 pounds shy of her goal weight. Wow! 

 

A Guest Post by Sharon Steele  

Sharon Womens Series 2013My mother was diagnosed with type 2 diabetes in the mid-90s. Both of her parents had type 2 along with several of her siblings. I have watched her struggle with complications of the disease, including hypertension, neuropathy and vision loss.

I realized that being obese increased my own risk for developing type 2, so I set out to reduce my weight and achieve an active lifestyle. I know I am not necessarily doomed to develop diabetes simply because it is prevalent in my family.

I am now 93 pounds lighter and within 20 pounds of my goal. How did I get there? It’s been a long, up-and-down road for me—almost 20 years.

It started with a food addiction

Like many people, I struggle with an addiction to sugary foods. I often joke that it’s my “drug of choice,” usually in the form of cookies. During stressful times, I would secretly binge on cookies, donuts, pies and so on.

My first major weight gain was when I was pregnant with my daughter in 1994, at age 26. This was the first time my weight surpassed the 200-pound mark. I went from 160 to 210 pounds, despite my vegan lifestyle. Though I lost a good amount of the weight after her birth, a stressful period in 1997 sent me on a lemon meringue pie binge. All-natural pies from Whole Foods still pack on the pounds! I could eat an entire 9-inch pie in one sitting! In no time I was back in the 200+ pound club.

Tired of carrying the extra weight, in 1999 I began taking cardio-kickboxing classes. Within six months I dropped below my pre-pregnancy weight, into the mid-150s. I maintained this weight through healthy eating and an active lifestyle for a couple of years.

I got married in 2001 and soon became pregnant with my son. I gained a whopping 60 pounds during that pregnancy due to an insatiable craving for steak. (Yes, I went from being vegan with my first pregnancy to a ravenous carnivore in my second.) I otherwise ate healthfully, but steak has a lot of calories and fat. My son was a big baby –10 lb. 3 oz.–so I instantly dropped from 220 to 185 when he was born. However, I gained 20 pounds back while I was nursing him. I learned firsthand about the often-overlooked calories in juices and other sugary beverages. I was drinking juice like water, racking up calories AND pounds.

I managed to get things under control and was working my weight back down—but then 2003 happened, bringing two life-changing events. First, I lost my job as an independent contract technology trainer and consultant, and I was ineligible for unemployment. A few months later, my husband told me he no longer wanted to be married. BOOM! Two days later, I learned I was pregnant; however, that ended in miscarriage in the ninth week. BOOM again!

After the miscarriage, I worked feverishly to lose the excess weight. I was at the gym at 5:30 a.m. five days a week, hoping to regain my husband’s attention. Within just a few months I was back to the mid-150s. However, despite all my efforts to save my marriage, I finally realized divorce was imminent.

My divorce was filed in the summer of 2004, kicking off a binge that sent my weight soaring to heights I had never known. I stopped weighing myself once the scale read 262 pounds. Though I appeared to hold it all together, inside I felt ugly, unlovable and ashamed of what I had allowed my body to become. But God, by His mercy and grace, had a purpose for me.

Embracing my dream of a career in fitness…

But get this: I’m now a fitness instructor! I first taught a fitness class in 1986, when I was 19 years old, but I really did not know what I was doing. I quickly withdrew, figuring I was no good at it.

Fast-forward 20 years. In June 2010 I weighed 195 pounds, having just completed the P90X program. More importantly, that is when I became licensed to teach Zumba® Fitness. My first classes launched the Saturday after Thanksgiving with my local parks and recreation department.

In the months between getting licensed and starting my classes I managed to get back up to 232 pounds (this time, I blamed Starbucks). I wanted to add more classes to my schedule but, as you might imagine, it can be a challenge for an overweight/obese fitness instructor to be taken seriously by club managers. After being turned down a couple times, I got my first break. I did a 30-minute demo and nailed it. The students loved it and I was offered my first club job.

It was a great experience, but eventually I decided to take my classes directly to the community as an independent instructor. That’s just what feels right to me. The growth of my classes and the people I have met over these last two years have been true blessings.

How did I FINALLY get the weight off?

I have learned that physical activity is vitally important to overall health, for weight loss and so much more. I had the exercise piece locked down.

It was more a matter of getting a handle on what (and how much) I was putting in my mouth. What worked for me was completely abstaining from refined sugar and flour and embracing fresh, whole foods, including lean proteins, healthy fats, vegetables, fruit and whole grains. (Except wheat; I learned I have sensitivity to it and my body responded very positively when I removed it from my diet.)

I won’t pretend that I don’t get sucked into the feasting of the holiday season, like a lot of people. I’ll pick up a few pounds, but I know how to get back on a healthy eating regimen to lose it and maintain a healthy weight going forward.

My message

With my story I hope to encourage others who may have similar struggles. Start where you are. It does not matter what you weigh now; what matters is knowing your goals and taking that first step. Some struggles will always be there; you need to learn to manage and navigate them. I know that I cannot be handed an entire box of cookies and expected to eat only one. Just give me one cookie and hide the box (in another building!).

Why I ride 

 I am passionate about raising awareness about diabetes and its complications. Thanks to the American Diabetes Association’s Tour de Cure®, I have developed a love for cycling. I am even in the process of becoming a certified cycling instructor and cycling coach! Now there’s the Tour de Cure Women’s Series, which gives women a chance to ride in sisterhood to celebrate all those who live with diabetes.

In 2013 I rode the Tour de Cure Napa Valley (50 miles) and the inaugural Tour de Cure Women’s Series in Santa Barbara (67 miles). This year, I am taking on my first full century ride in the Tour de Cure Napa Valley and serving as the volunteer chair for the Tour de Cure Women’s Series in Northern California.

I’m taking the ride of my life! I count every moment, every tear, every struggle and every triumph as a blessing. If you live in California, I hope to see you out there for the Women’s Series!

Celebrating Diabetes? A Look At The Diaversary

I’m a big fan of diaversaries. I’ve celebrated each one of mine for the past 20 years and have even gone so far as to create a line of greeting cards dedicated to them. But not everyone has the same thoughts and feelings towards the day our lives all changed. Nebraskan-turned-Oklahoman Kristin, who was also diagnosed at age 8, offered to write her thoughts about her 24th diaversary, which is happening this month. Take it away, Kristin!

A Guest Post by Kristin Ewing

aTNeOmwSCelebrations!

Is it just me or does our society go crazy for any sort of celebration? Granted, the degree of intensity of celebrations varies but there is always a segment of the general population celebrating something. The majority celebrate things such as birthdays, anniversaries, graduations, etc.

In one of my circles of friends, there is a significant milestone a large majority of us celebrate – the dia-versary – the anniversary of our diagnosis of diabetes. Myself? I’ve celebrated it a few times – maybe twice? I feel conflicted on celebrating. Let me explain.

First, start with the name this milestone of our lives has been given. Say it out loud. Dia-vers-ary. That first syllable, dia, it throws me. It just makes the entire phrase sound sad. If we’re celebrating, shouldn’t it be something with a more joyful sound. Something that elicits a squeal of excitement when you hear someone talking about how the day is fast approaching?

I’m also conflicted on celebrating because, honestly, I’m not very thrilled to have diabetes. I’d much rather not have it than have it. I’m confident in saying all diabetics share that thought. Now, the eternal optimist within me has absolutely no hesitations and looks forward to celebrating how many years I’ve been diabetes free once that cure is found.

What conflicts me the most is by celebrating my dia-versary is it forces me to remember the struggles as a small town kid being diagnosed with an uncommon disease in that area. Remembering those days, my struggles, the loss of my school friends, my rebellious streaks and so much more makes me cringe. Thinking about that time period as I write this blog post makes me cringe and has me wanting to run home to curl up with my puppy. So, yes, I’d really not celebrate something with so many negative memories.

But then I think about how far I’ve come. Seriously. Leaps and bounds galore. Instead of “I don’t give a damn” attitude towards my diabetes, I am slowly forming a “I don’t give a damn” attitude towards what others think of my diabetes. I’ve gone from crazy, scary, out of control to shockingly great control (although not perfect yet) with the help of a pump.

At the end of March, it will be 24 years since I was diagnosed with diabetes. I’m not sure if I will celebrate my dia-versary or not. Since I can’t even remember the exact date I was diagnosed – I just remember getting out of the hospital on April Fool’s Day – I’m just not sure. As I think about this, perhaps it makes more sense to celebrate my “pump-ersary” because has been the key in my positive changes.

However, if I do celebrate, I’m celebrating with style – I’ll be making s’mores on my outdoor fire pit. In the meantime, it doesn’t matter if I do or don’t celebrate it, what matters is a) dia-versary really needs a more positive name and b) it isn’t all glitter, sunshine and unicorns to have diabetes but I can certainly celebrate that I’m successfully conquering it by staying alive.

 

Question: Do you celebrate your diaversary? Why or why not?

JDRF Government Day

A couple of years ago, I was lucky enough to be invited to attend JDRF’s Government Day in Washington D.C. as a panelist for their session on social media. Not only did I get to speak to dozens of committed JDRF volunteers about the power of social media, but I also attended meetings with Members of Congress on the Hill. It was the first time participating in political advocacy since I was a JDRF Children’s Congress delegate and it was awesome! 

JDRF recently hosted their annual Government Day and blogger Meghann Tinker offered to write about her experience as a first-timer there representing her homestate of Ohio. Meghann, a fellow 20something, has had type 1 diabetes for almost 25 years, but this was her first time interacting with politicians, which can be very nerve-wracking! Let’s see how things went on the Hill…

A Guest Post by Meghann Tinker 

Back in January of this year, I received an invitation to attend the JDRF Government Day event. My best friend (and type 1 diabetic) friend, Jenna, had nominated me to attend the event with her, through our local chapter. Jenna helped me with hotel and flight reservations. I don’t travel often, and I wasn’t sure which direction I needed to go in to make sure that my reservations were secure.

While waiting for the first weekend of March, I’ll have to admit to you—I wasn’t completely understanding the vast importance of the event. I mean, I knew that the “newbies” would be briefed on how to conduct a meeting, and what exactly the Special Diabetes Program (SDP) entailed, but I really had no idea.

Saturday, March 8 had finally arrived.meghann3

I had packed my suitcase a few days before, so the morning before our flight departed from Columbus (CMH), I ran to the bank, and Target to pick up a few miscellaneous items (including Level Foods protein bars). My little brother took me to the airport. Our flight was delayed, and I was early, so I checked my suitcase, and picked a spot at the cafe, to sit down and Google.

I learned that the SDP was a program, designed to advance T1D research at the National Institutes of Health (NIH). The SDP also funds treatment, education, and prevention programs (for specific populations of T2D). Jenna arrived, and checked her suitcase. The next part that we had to endure terrified me: the TSA.

The pat down, was in short, a breeze. I’m not even sure what I was so terrified about. The agents were professional, and asked Jenna and I sincere, curious questions about T1D and our devices.

We stopped at the airport Starbucks and charged our phones, while we waited for our airliner to arrive. The flight was about an hour and ten minutes long. Once we arrived, I was in awe of being in a different city. My eyes were wide with excitement.

The JDRF Government Day dinner began at 6:30 PM, and we arrived at our hotel to check in around 6:45 PM. Jenna’s room was on the 6th floor; Mine was on the 10th. We decided to keep my luggage in her room to save time. Shoes, shirts, and pants were changed, and we raced up to the 16th floor to join the other advocates (roughly 160 people). Our Midwest table was at occupancy, so we chose to sit with some great advocates from the Chicago, IL area (including Lisa Callaway)!

Everyone had to stand up and introduce themselves and explain their connection to type 1 diabetes. Some of the stories were unreal. One woman had 2 out of her 3 children diagnosed with T1D, and the third child had the antibodies and potential to develop T1D. Grandchildren, children, friends, colleagues—T1D is more prevalent than you think. These stories brought tears to my eyes; they were so moving.

By the time the microphone got to me, I was shaking. I stood up, and told my story. My voice ended up breaking. Lisa Callaway rubbed my arm and told me everything would be OK. I appreciated having that comfort from a complete stranger-turned friend.

meghann2It was after the dinner, I finally got to meet Karen Bittersweet (Graffeo)! It was surreal to embrace someone you had met and become friends with over the internet!

Sunday morning came fast, and with the time change, we were all yawning over breakfast. We had a presentation on a progress report of the SDP, which was fascinating. I learned so much during this session (you can view my live tweets on Twitter). After lunch, we had small group sessions, which included a social media presentation (a “How To” with advocacy, if you will). The session I learned the most at, was “What To Expect When You’re Expecting…To Meet With Your Legislator!” which was officiated by Niels Knutson. I walked out of there after the 45 minutes feeling better about the meetings. I was terrified of what I didn’t know! Later that evening, we went out to the Hamilton DC downtown for dinner with our district attendees.

Monday morning came fast. I woke up before my alarm, ready to take on the day. Jenna and I took the hotel shuttle to Capital Hill, with about 20 other advocates. Our first meeting was with the staff of Bill Johnson (OH-6). I was so nervous. I had no idea what to expect, being that I was officially in the real-time situation. Our meeting with David Rardin was sweet and brief. I walked out of the office, alongside Jenna, all smiles.

We stopped and had some lunch in the Senate Cafe with our Midwest D-Mom’s, and then headed into our meeting with the staff of Senator Rob Portman. All five of us were so nervous, because we had to convince this member to support the SDP.

After the meeting, Jenna and I had to rush to meet with the staff of Joyce Beatty (OH-3), and then with the staff of Pat Tiberi (OH-12). All of our meetings for the day were complete. We stopped at the National Air & Space Museum, and headed back to the hotel shortly after.

My feet were killing me. I had worn a pair of black ballet flats, that I had wrongly assumed would be fine to be in for the day. Ouch. I’m pretty sure the skin of my pinky toes was torn clean off! Thank goodness for the D-Mom’s—Brandy Kohut gave me bandages to place over the horrendous blisters that my Target shoes inflicted.

meghann1Our JDRF CEO dinner began at 6:30 that evening. I couldn’t believe that I would have an opportunity to meet the leader of our foundation! Mr. Brewer and his VP of research and advocacy, Dr. David Wheadon, provided an excellent presentation in regard to making Type 1 become Type “None.” Dr. Wheadon actually pulled out a preliminary model of an islet sheet! I got to hold it and take a picture with it! The islet sheet smelled like fresh tape.. So new and innovative!

Tuesday morning was awake at 6:30 AM to greet me with sunshine through my hotel window. I took my time to get ready, and pack my suitcase. Our first meeting on the hill wasn’t until 1:30 PM that day (with Senator Sherrod Brown’s staff). Jenna and I did some sightseeing, and stopped at the National Museum of American History.

We met with Senator Brown’s staff member, Val Molaison right on time, to discuss the renewal of the SDP. After our meeting, we rushed to meet with the staff of Steve Stivers (OH-15). Taryn was great! Jenna and I enjoyed meeting with her very much. We had some extra time to do some more sightseeing and eat a late lunch before we picked up our luggage at the Capital Hotel to get to the metro. We ate at this pizza joint called We, The Pizza. Jenna and I pondered over how many carbohydrates was in a New York-sized slice of pizza (25 grams, probably).

After we picked up our luggage, we walked a couple of blocks to get to the metro (my first time using it). Once at the airport, we checked our luggage and sat at our gate to charge our phones and scarf some dinner. Our flight was delayed, again (surprise), but we finally landed back home in Columbus, Ohio after 9:30 PM.

Overall, I was honored to have been a part of JDRF Government Day. I would be thrilled to accept a nominated invitation next year!

 

We’re so happy to have you advocating on our behalf, Meghann!

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.

 

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.

On Being Diagnosed With “Juvenile” Diabetes As An Adult

I was diagnosed with type 1 diabetes twenty years ago this month, so my frame of reference for this disease is entirely different from someone who was diagnosed as an adult. For me, strange questions come from strangers, not from my own family. Because I know my experience with diabetes is limited, I’m inviting more young adults to share snippets of their stories. Today, Rachel Kerstetter shares her experience of being diagnosed with type 1 diabetes as an adult, but not having her own diabetes story accepted for what it is.

A Guest Post by Rachel Kerstetter

ProbablyRachelI’m excited to share some of my story with you today and grateful to Allison for the opportunity! When I volunteered to write a post about being diagnosed with type 1 diabetes as an adult, I wasn’t quite sure what I wanted to say but as I thought about it more, the one thing that stood out is the way that other people perceive my diabetes.

For the first 22 years of my life I was a “normal,” healthy girl. I had a reasonably regular childhood and transition into adulthood. Then the busiest summer of my life hit me, I graduated from college in the beginning of May, married my husband at the end of May, really started my career in July… then in August I found myself in the doctor’s office, unsure of how I had dragged myself in there and waiting on the results of a pregnancy test.

My doctor had already called in a prescription for nausea medication to my pharmacy while we waited for results. She came back into the room and sat down beside me on the exam table and calmly said, “Your tests showed a large amount of glucose in your urine and you’re producing ketones. You have diabetes, it’s a pretty serious situation and we need to send you to the hospital. Do you have anyone with you?”

The arranged my admission to the hospital and for my mother-in-law to drive me there. I called my husband to tell him what was happening and I told him not to come, that I would keep him updated. He worked at a medical communications company at the time and when he discussed the situation with them and looked up the numbers from my test results, they told him to go be with me.

It wasn’t until hours after I was admitted that I finally spoke with a doctor and I asked the question, “What type of diabetes do I have?” Everyone just said “diabetes.” No one bothered to explain to me the types and what had happened. The doctor looked at me with surprise in his face and said, “You are a typical type 1.” But it didn’t take me long to realize that I was anything but typical.

The nurses didn’t realize that I was newly diagnosed and had no idea how to give myself a shot until I told them. I realized later that the dietitian they sent to talk to me thought I had diabulimia. The RN who taught me how to test my blood sugar only had a kit for children and nothing for an adult.

When learning about my diabetes, I’ve had people use words like “juvenile” and “brittle” to describe it. I’ve been asked if I’ll outgrow it, I’ve been told that it’s my fault that I have it and my insurance company refuses to call my type 1 anything other than “childhood-onset diabetes.”

I’m often thankful that I wasn’t diagnosed as a child because I know what it would have done to my family. Because diabetes wasn’t a part of my childhood and my family’s environment though, I know that my family doesn’t understand a lot of aspects of it. Like carbohydrate counting. In the beginning it was tough because people tried to feed me sugar-free stuff but without a carbohydrate count. They didn’t understand that I needed to take Lantus at the same time every day and now that I’m on a pump, they don’t quite get that my OmniPods can’t just be stuck back on if they get ripped off.

For friends and family members who don’t see me on a regular basis, I find that they often forget that I have diabetes because they remember the old Rachel. One of the best places for me to start my advocacy was with those closest to me, but it’s been really important for me to remember that the realities of diabetes will never be fully understood by people who haven’t lived with/around it every day. When I call my mom with my latest test results and A1c, I still have to answer the question, “So, is that good?”

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If you would like to share your own story of being a young adult with diabetes (either type) please contact me at . P.S. You don’t have to currently be a young adult with diabetes.