A good friend of mine, who has type-1 diabetes, recently posted this picture on her facebook wall. Of course I just sort of shook my head in response that someone would then post the below comment to it on facebook. The people who are educated about diabetes can’t believe the level of people’s ignorance. People who haven’t been “properly” educated about the disease do ask these types of questions and/or make ignorant comments to people living with type-1 and type-2 diabetes. I can only speak from personal experience in the arena of type-1.
Most people who read my blog are pretty familiar that there is a difference between type-1 and type-2, but if people aren’t I would like to share the quick differences. I took the quoted information straight from the American Diabetes Association’s website diabetes.org.
“Diabetes mellitus (MEL-ih-tus), or simply, diabetes, is a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin.
Type – 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. In type 1 diabetes, the body does not produce insulin. Insulin is a hormone that is needed to convert sugar, starches and other food into energy needed for daily life. Only 5% of people with diabetes have this form of the disease.
Type- 2 diabetes is the most common form of diabetes. Millions of Americans have been diagnosed with type 2 diabetes, and many more are unaware they are at high risk. Some groups have a higher risk for developing type 2 diabetes than others. Type 2 diabetes is more common in African Americans, Latinos,Native Americans, and Asian Americans, Native Hawaiians and other Pacific Islanders, as well as the aged population.
In type 2 diabetes, either the body does not produce enough insulin or the cells ignore the insulin. Insulin is necessary for the body to be able to use glucose for energy. When you eat food, the body breaks down all of the sugars and starches into glucose, which is the basic fuel for the cells in the body. Insulin takes the sugar from the blood into the cells. When glucose builds up in the blood instead of going into cells, it can lead to diabetes complications.”
Just because I’m well versed in diabetes knowledge, I do not believe that I have that same knowledge for other conditions (far from it!). My cousin has down syndrome, and because I know of people putting stereotypes on diabetes that have hurt me in the past, I ask questions if I’m not sure instead of make statements to my aunt, uncle, or cousins. To me the learning lesson in all of this is showing compassion to people. The truth is, for the most part, we don’t know what someone else has had to walk through. And let’s be clear, I’m no angel. I have had several days in my life were someone has said something very rude and ignorant to me and without even thinking I give a snarky response back. In my clear mind I know that instead of getting worked up, I need to channel that energy in helping educate that person about the truths of diabetes. Will you join me in telling, writing, whatever creative avenue that you have….to tell YOUR DIABETES STORY!?! This is what will help change the perception of this disease.
This day is like a second version of Christmas to me…diabetes style! The American Diabetes Association (ADA) puts on a lot of
incredible fundraising events across the country every year. The STOP Diabetes Gala for the MN ADA holds theres at Treasure Island, just south of St. Paul, MN. Like I told my friends…it’s our version of an adult prom!
We started our day with pampering for the gals in the “girls only” designated room…mud masks and all! The guys were locked in the other room watching the Kentucky Derby. We had a wonderful group who all chipped in and bought a table together. It was fun getting to
see so many people who I consider a 2nd family to me. I’ve sort of grown up with the association by starting out as a volunteer at the age of 10 so the gala is a wonderful reunion.
The dinner was wonderful (the dessert was my favorite…red velvet cake)…my best friend Kate and I even did a cheers with our forks! The night was inspiring by all accounts. The ADA did a wonderful job in showing everyone the ADA’s mission as well as giving out awards to very deserving people and organizations who have dedicated themselves to helping in the fight. An unexpected moment happened when my good friend Emily Stunek got up to speak. I knew she was speaking about her involvement with the association…but that was about it. She shared her story of being a junior high kid and a high school kid coming into the junior high and speaking about her ADA volunteer experience and how that forever changed her life. And that high school student happened to be me. Sometimes I can get very
frustrated with myself thinking I haven’t worked hard enough or raised enough money for diabetes….but Emily’s speech brought me back to why I devoted my life to this cause…by wanting to help other young women see that there is life after diabetes….and a wonderful, fulfilled life at that. Thank you Emily for that sweet reminder.
All in all the event raised over $150,000! If you didn’t have an opportunity to support Camp Needlepoint and Camp Daypoint during the financial appeal at the gala you can still do so by making a donation at http://main.diabetes.org/site/Calendar?id=34701&view=Detail All donations to support Camp Needlepoint and Camp Daypoint are 100% tax deductable.
Special thanks to Kate & Matt Penz, Shannon & Katelyn Reabe, Rob Andree, Charlie Young, Liz Neaton & Joel, Emily & Jake Stunek, & Jeanette Sterner for such a wonderful night!
I don’t have a blog so that I can say what my political affiliation is and/or make a stand on a certain issue. What my purpose of writing a weekly entry is to write from my personal experience of living with diabetes.
Being a person with a pre-existing medical condition (type-1 diabetes), it’s currently impossible to go out and buy my own health insurance through an insurer. Those companies can currently discriminate who they bring on as policyholders.
As so many of you know I decided to leave my corporate job over a year and a half ago to pursue my dream of doing diabetes advocacy work full time. I’ve been able to have health insurance through my former employer through COBRA. Just the premium costs me almost $600/month. It’s very expensive but I’ve been blessed to still be covered by good insurance. Well that all comes to an end after April (todays my last day). I’ve been looking at my different options and it seems that I only have two (unless you can think of some other ones for me)…
1. Find a man that has a steady job & great health insurance and convince him to marry me ASAP! (though my Mom informed me this is fraudulent activity!)
As a person living with type-1 diabetes its an incredibly expensive disease because of constantly needing to pay for your daily supplies. I absolutely could not afford the money out of pocket if I didn’t have insurance…and I’m just talking about the basic, life support supplies. Insulin is NOT a cure for diabetes….it’s simply my life support. Without it, I can’t live.
It’s hard for me to think that we live in 2013 in the USA and it’s this difficult to even get a basic plan. To me this is a catastrophic issue that I’m glad our government has been having a conversation about it. Until a national issue hits you so personally, we sometimes feel disconnected from political decisions. I just hope that a solution can come sooner…rather then later.
Wish me luck in my search for basic health insurance. Let me know what your experiences have been with health insurance and having a chronic condition.
Last month I was chosen to represent Minnesota at the 2013 American Diabetes Association (ADA) Call to Congress event. Advocacy is something that is near and dear to my heart. I first attended this event when I was 16 years old and had just been chosen as National Youth Advocate for the ADA. Over 200 diabetes advocates flew in to Washington, DC from around the country to be trained on what issues are imperative on Capitol Hill for people living with diabetes. On the 2nd day of the conference we stormed the hill and met with our US Senators & Congressmen. Our Members of Congress want to hear from their constituents about issues that are important to them (we do vote if they’re in or out). My goal is to try to put a face and a name with the cause. The statistics can get overwhelming for anyone. I want them to know how diabetes has personally affected my life and my brothers.
It was a successful 3-day conference! It was fun to see fellow friends and past National Youth Advocates that I’ve served with…it was
kind of like Homecoming!
Jim McGowan put together a wonderful video where he wrote and performed the songs on it about stopping diabetes. Check it out…song and montage of advocate visits to Capitol Hill and their inspirations to STOP DIABETES…
ACTION STEP: Become an advocate! It’s quick & easy. Click here to be brought to the American Diabetes Association’s page on where you can sign up to be an advocate (you will see a red sign-up box on the right hand side of the page). They will email you when there is an important diabetes piece of legislation that is going to be voted on. They make it quick and easy for you to send a form letter to your Member of Congress. I promise you it takes 3 minutes to do and you only get 1 e-mail from them every other month (you will not be spammed). Will you join with me in helping STOP DIABETES!?!
I’m like a little girl on Christmas morning when I receive a package in the mail that contains new diabetes technology (I’m a diabetes dork, I know). This last week I was sent a Dexcom’s BRIGHT PINK BRAND NEW G4 Platinum Continuous Glucose Monitor. I was encouraged to give it a try by another woman with type-1 diabetes who’s a user. A medical professional can make any recommendation they would like for me to use a certain product, but I rarely take their advice, instead I always ask other people with diabetes. They’re the ones who live with diabetes every minute of every day. Has this been your experience?
I have to say so far I’ve been incredibly impressed by it. The sensor is quite accurate. Even better, the inserter is easy to use and once it’s in under your skin you cannot feel it at all (I’ve gotten discomfort from other companies products in the past). The other thing I like about it is that you can wear the sensor for 7 days. Two problems that I’ve had with it…
1. The adhesive for the sensor is not that sticky. I went to hot yoga on my 1st day of wearing it and it all came right off! I now have used a skin adhesive as well as putting two sheets of tagaderm over it.
2. The other negative is having to carry around a second device. It hasn’t been as bad as I’ve thought because I’m used to carrying my iPhone and Medtronic insulin pump…I guess it’s just another thing to throw in my rapidly expanding purse!
As someone who’s struggled with not always being able to feel low blood sugars…this type of technology has been a Godsend. I have such a fear of not waking up in the morning. The last two nights it’s waken me up (very annoying alert, which I guess is good!) with a low blood sugar alert. The truth is because of these hypoglycemic unawareness situations…a continous glucose monitor (CGM) system is a perfect fit for me and my diabetes care.
Do you wear a CGM? If so, which one? What have your experiences been?
People always seem surprised when I tell them that I raise over $5,000+ every year for the American Diabetes Association. I hear a lot about, “Isn’t that awkward to ask people for money?” I actually don’t think it is…and here’s why…
The cause of diabetes is so personal to me and I’ve met thousands of people who also have the disease. I know the struggles that come along with living with a chronic illness and remember the faces of the people who’ve told me their stories. I’ve seen where the dollars go that are raised through the association and believe in the work that they are doing and accomplishing.
I sit on the Community Leadership Board for the American Diabetes Association and last week I was asked to speak at our monthly meeting about “making the ask”. When I’m asking people to donate to the cause and/or to volunteer for an event…I’m asking people that I know and who know me. Just like I would want to help a friend if they have a cause that’s so personal to them, I feel like vice versa I’m just telling people what I’m up to and my life’s passion….helping find a cure for diabetes. I’m never offended if people say no to me…I just think I need to ask more people.
Two weeks ago I was out to dinner with a good friend of mine who also happens to have type-1 diabetes. We were at The Lowry in Uptown. Without even thinking I took my insulin pump out of my pocket, dialed up my bolus dose, and then sat the device on the table…while continuing to talk with my friend. I don’t know if 5 or 10 minutes passed but a young woman around my age approached our table and she asked me, “You have type-1 diabetes?” I said yes without even realizing that she must of seen my pump. I told her yes I do and that I’d worn a Medtronic pump for the last 11 years. My friend also told her, her diabetes journey. With tears in her eyes, Dez told us both about how much this meant to her to meet other people her age living with type-1. At that moment I asked her if she would be interested in meeting other people with type-1 at the sub-committee I run for diabetes advocacy. She instantly said YES when I told her it would be tomorrow at my house. The reason why I tell this story is for a couple of reasons…
1. When you’re open and comfortable to talk about your disease…you just never know how that can affect a total stranger’s life around you. Don’t we all want to try to give hope to another person?
2. If I wouldn’t have told her about the sub-committee meeting she would never had known about it. She came to the meeting that next night and said she feels incredibly blessed to be in such a great, supportive group.
MAKE THE ASK! Some may say no, but the ones who say YES make it totally worthwhile.
Has this ever happened to you…you have type-1 diabetes and a mutual friend introduces you to another person with type-1 diabetes and you instantly feel like you’ve known that person for years? Like you have an instant bond? When I met my diabetes soul mate 6 years ago it was just like that. Ashley is funny, passionate, driven, beautiful, kind, supportive,
adventurous, and incredibly generous. She also happens to have had type-1 diabetes since she was a baby. We were introduced when we were both living in New York City for the summer doing college internships…me at a fortune-500 financial company…her at Zac Posen (she definitely had the cooler gig). The moment I met her I knew we would be lifelong friends. We just got each other. We knew what it was like living with type-1 diabetes every minute of our life. We could finish each other’s sentences. Something that we really bonded on was going after our individual dreams. Ashley has been one of my biggest cheerleaders in the quest to raise more awareness about diabetes & getting my book published. I have been cheering for her in the front row of her college graduation fashion show at Purdue. I’m BEYOND thrilled and excited for her that AMAZON has recognized her incredible talent as a fashion designer. This week ONLY her stuff is being featured on “My Habit”, the fashion end of amazon.com. You can buy her items there (at a great price!) until Friday morning. Please check out her website as well and support my lovely friend, Ashley Zygmunt for Zamrie. http://www.myhabit.com -> Scroll down to Zamrie www.zamrie.com
More about Zamrie: After working under Zac Posen and Peter Som in New York, designer Ashley Zygmunt returned to her hometown of Chicago in 2009 launching the ZAMRIE label with the mission to create timeless pieces for women that are both fresh and classic.
I’m beyond thrilled to announce that my non-profit, “dateline diabetes” has officially been given 501(c)3 status by the IRS!!! That means when someone makes a donation to my charity it will be tax deductible for you.
A portion of the profits from my upcoming book release, “If I Kiss you will I get Diabetes?” will directly go into my non-profit.
Here’s a little more information about dateline diabetes…
When I was diagnosed at the age of 13 I desperately needed to talk to someone who had already had diabetes for a couple of years. In the doctor’s office I couldn’t see pass that day, I needed someone to help me have hope with my future goals and dreams. I created “dateline diabetes” because I saw a need out there and I wanted to help do what I can to help fill that. My inspiration for calling the nonprofit “dateline diabetes” is because dateline is defined as “a line giving the place of origin and usually the date of a news dispatch or the like.” The work that I do comes from my own personal story with having a chronic illness for the past 13 years and I want others to feel empowered to tell their story of origin.
Dateline diabetes serves two specific purposes. First, we provide Baskets of Hope to recently diagnosed diabetics. It will include items such as diabetes educational material, a journal, markers, and information on how to get set-up with a mentor. As well, the parents of the diagnosed will have an opportunity to get set-up with another parent who has a child with diabetes. Second, dateline diabetes provides diabetes camp scholarships to people living with type-1 diabetes who cannot afford to attend.
I’m currently working with a new web developer to redo my entire website so starting this summer (hopefully June 1st) people will be able to go on to the site and 1. Fill out a form requesting a Basket of Hope. 2. Apply for a camp scholarship to be paid directly to the American Diabetes Association camp of their choice (criteria will be based on personal passion for life as well as if they’ re in financial need). 3. Make a donation to the charity.
The lessons that I learned at the age of 13 at Camp Needlepoint I will carry with me for the rest of my life. I realized that I didn’t get a choice in getting diagnosed with type-1 diabetes, but I certainly got the choice on how I was going to react. I hope that you will join me in helping support “dateline diabetes”.
Note from Quinn: This week I’m honored to have a guest blogger contribute to the important conversation of eating disorders and diabetes. Read her story below…
Imagine the following: In order to live a long and healthy life, you must become somewhat of a pharmaceutical mathematician; a walking, talking, carb and calorie counting, nutrition facts memorizing pincushion. You have a chronic illness called Type 1 Diabetes. Numbers and food are precisely calculated every single day for every single meal. In order to live with type 1 diabetes, you must walk the fine line of control and obsession. Recent studies suggest that potentially one in three women living with type 1 diabetes may be struggling with an eating disorder.
I was diagnosed with Type 1 Diabetes when I was 5 years old. I grew up with this all-encompassing chronic illness and I barely remember my life before the click of the lancet, the beeps from the glucometer, and the hypoglycemic episodes that still, after 23 years of living with this disease, scare me.
My eating disorder didn’t start overnight. Besides the daily rollercoaster ride of living with a chronic illness my childhood was wonderful. But something changed drastically after 6th grade. Middle school was a challenge and high school was even harder. No one else had to worry as much as I had to worry. No one else had to eat a snack in the middle of class, and no one else had to stop in the middle of something because they were “low”.
My inability to cope with living with type 1 diabetes, and with all the challenges and complications living with that chronic illness creates while trying to just be a teenager, ignited a deep resentment and sense of anxiety inside of me. I felt that I was trapped inside a failed body that would not allow me to ever feel truly free. What started out as an attempt to avoid having low blood sugars (mostly while performing on stage) and an honest desire to just not have to “worry” about my diabetes for a few hours became a dangerous eating disorder that nearly cost me everything; my career as an actress, my marriage and my life.
I lived in a self-made hell for almost ten years of my life.
Four years ago I took my first step toward living my life fully again when I accepted treatment at The Park Nicollet Melrose Institute in Mpls, MN; one of the very few Eating Disorder Treatment Centers that offers a program specifically tailored to type 1 diabetics with eating disorders. It was the scariest (and yet probably bravest) thing I have ever done.
Living with my diabetes today is very different after finally coming to terms with my eating disorder. There are still challenges in navigating my diabetes management through my daily life, and there always will be. The difference is that that now when an unexpected challenge arises, I am not afraid to do whatever is necessary in order to take care of my type 1 diabetes and protect my strong recovery.
Helping other type 1 diabetics who struggle with an eating disorder has helped me stay strong in my personal recovery. In 2012 I founded the organization We Are Diabetes to help diabetics find the unique support and resources that they need in order to live a happy, healthy life. Recovery is possible no matter how long you have been struggling and no matter how “lost” you may feel. There is always hope!
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.