#MakeInsulinAffordable

Staying alive shouldn’t cost so much. Join the ADA’s effort to #MakeInsulinAffordable for people with #diabetes: http://makeinsulinaffordable.org

“Insulin isn’t just a drug. It’s the difference between life and death for millions of people with diabetes – and it’s something they will need every day for the rest of their lives.

When you or someone you love needs insulin and cannot afford it, the choices are scary. With the average price of insulin skyrocketing in recent years – nearly tripling between 2002 and 2013 – more and more of our family members, our friends, our neighbors and ourselves are faced with tough choices to pay for this lifesaving drug.

This is unacceptable. It’s time to stand together and call for change.

Join us in calling for increased transparency and more affordable insulin. More than 188,000 people have signed the American Diabetes Association’s petition to support those struggling with insulin affordability. Add your name today.” – ADA

Heidi: Battling Diabetes With Exercise

 

When were you diagnosed and with what type of diabetes?

I was diagnosed with Type 1 Diabetes on October, 24, 2011, at age 25. I just celebrated my 4-year “diaversary” a few weeks ago.

What has been the most difficult adjustment since diagnosis?

I think the simple fact of having to step in for my pancreas 24/7 has been the toughest thing for me to handle. Diabetes literally is affected by everything that you do—whether it’s eating, sitting in traffic, exercising, etc. Sometimes I joke that the color I am wearing that day impacts my blood sugar levels. You can do the same exact thing every day and experience very different results. For someone who is stubborn and a perfectionist, it’s quite the struggle.

But that same part of my personality that finds management so frustrating is the part that allows me to thrive each day because I won’t allow diabetes to get me down.

What is your greatest accomplishment?

I am so proud of the person who I have become in the last 29 years, but above all, I think I achieved my biggest accomplishment earlier this month when I completed the 2015 New York City Marathon (my first). I started running a couple of months after diagnosis to help with my diabetes management, and throughout that process, I just decided to keep challenging myself. I never really had any motivating factor to exercise until my health gave me a reason to care. For me though, I wanted to push more. Having diabetes makes it so much more challenging to run (even though exercise is positive!), so running gives me an avenue to fight back and prove, mainly to myself, that not only can I run, I can run long distances. Training for the marathon and the event itself was the hardest thing I’ve ever done, but I did it. And I did it with Type 1.

How does diabetes affect your ability to exercise? How do you manage these obstacles?

As freeing as running can be, doing it with Type 1 can sure feel restricting. My performance is impacted by my blood sugar levels, and activities need to be planned in advance because of everything I have to take into account. It’s hard for me to just say, “OK, I feel like going out for a run right now, so that’s what I am going to do.” That’s so frustrating! If I have insulin in my system, I tend to go low during a run because my insulin sensitivity increases. For me, I eat without insulin and then run to let the exercise burn off as much sugar as possible. If I need to, I’ll use insulin after I am done running.

I wear a Medical ID charm on my necklace that has my name and says I am an insulin-dependent Type 1 diabetic just in case I do experience severe low blood sugar during a run and somehow can’t take care of myself. I carry a running pack with my phone, my CGM receiver, my pump manager, a lancing device to prick my finger, test strips and high-sugar snacks like fruit gummies or gels in case my levels drop. For extra-long runs, I depend on family members to ride bike alongside me so I am not alone should I experience a medical emergency. It’s hard work, and I don’t even have it all figured out yet!

How has blogging benefited your experience with managing diabetes?

It has allowed me to put certain feelings and thoughts into writing. My career is in writing, and I often help other people tell their stories. Blogging helps me tell mine.

 What is the best advice you would give to a newly diagnosed person?

The absolute first thing I would say is that even though you have diabetes, you can still do anything. Yes, it might be more challenging, but it’s certainly possible. Take things one step at a time, and have patience.

Another thing that I need to stress is the importance of being open and talking to someone about it, whether it’s your family, friends, the diabetes online community or a diabetes coach/educator. Managing the disease every day is tough, and sometimes it feels like the numbers on your meter or your A1C results are grades for how you’re doing. It’s helpful to know you have someone to rely on without feeling judged.

Keep updated on Heidi’s inspirational story by visiting her blog The Runner Hi or follow her on twitter @TheRunnerHi! 

Debbie: Training with Diabetes

You rock climb and hike, can you tell us about how you manage that with diabetes? 

I am a type 1 diabetic since August 1989. I have always been active either in dance or gymnastics as a kid. Now I rock climb in an indoor gym but I am only a very beginner. I do have extensive experience camping hiking and backpacking as I have done some amazing three day backpacking trips in Kanannaskis.

I managed by using my insulinx meter system. Back then it was 2014 and I went up and down a lot but the experience of camping with a great group of friends who I trained on the glucagon system it was amazing.

Keep updated by following Debbie on twitter @DIABETES_DEB79

Garrett: JDRF Insight

1. When were you diagnosed and with what type of diabetes?

I was diagnosed with type one diabetes (T1D) at age 13 (8th grade), October 3rd, 2005. I just celebrated my 10 year “Dia-versary” this month.

2. How are you contributing to finding a cure? Do you believe that one day we will have a cure?

I contribute to find a cure by participating in the annual JDRF One Walk to Cure Diabetes and act as a corporate committee member, as well as Stanford University research. Being in the Silicon Valley affords us incredible opportunity to delve into the technology space. Significant work and research is being done in the device realm especially for type one diabetics and Stanford is at the forefront. I am lucky enough to live close by and participate in their research as a “guinea pig.” I am fascinated by this space and am more than willing to do my part by working with Dr. Buckingham and other brilliant team members to find the cure. I am confident that we will have a cure or what I consider an “effective cure” (meaning the user/patient with T1D is removed from the equation in managing disease) in the next ten to fifteen years and I want to be first in line to get it.

3. Why JDRF?

The Juvenile Diabetes Research Foundation (JDRF) has done and continues to do incredible work in type 1 diabetes research. JDRF’s collaborates with many partners to remove the impact of T1D from people’s lives until we achieve a world without T1D. They are exploring a dynamic research agenda from the artificial pancreas to beta cell encapsulation, and smart insulin. Through the One Walk to Cure Diabetes, thousands participate in walks all over the country and fundraise in teams. It is an electric environment that all diabetics should engage with. If you would like to support the Ernst & Young team, you may give and share here: www2.jdrf.org/goto/EYCarbAccounters

4. Has diabetes ever affected your schooling or career?

Diabetes has absolutely affected my schooling or career. It has opened me up to a field of study and cause that I otherwise would have little knowledge of. It has created strong connections with friends and organizations all over the country. It has empowered me to not limit myself in what I can accomplish. Of course there have been challenges and managing a disease that you never get a break from is frustrating at times, but with my support group, I know there is always someone to call, text, see, e-mail, or message. I am even trying to get on The Amazing Race with a diabetic friend of mine from Pennsylvania I met a decade ago at the Chris Dudley Basketball Camp for Kids with Diabetes in Oregon.

5. How do you handle having diabetes when you are traveling?

I have learned many tricks traveling with diabetes. Some lessons I learned the hard way. Here are a few of the key tricks I picked up traveling abroad from weeks in Turkey to moths in SE Asia. Using a Medtronic insulin pump, Dexcom CGM, and Bayer glucometer means I need A LOT of supplies.

• Bring a backup insulin pump by calling your pump company. They are affordable and all you must do is return it after your trip is finished. In humid locations and seasons, like Vietnam during a monsoon, your buttons may stick afterwards.
• Bring two to three times the amount of supplies you need. For example, 9 day trip is 3 site changes, so bring six to nine or more.
• To save bag space, remove the sites and reservoirs from the box
• Bring Lantus! If your site fails or your pump fails, you will need long acting insulin. Otherwise, you will be using Novolog/Humalog every few hours.
• Bring a doctor’s note and prescription. The prescription is not valid abroad, but it can help. The note is helpful in airports and checking baggage.
• Be willing to speak up! You should not have to pay for extra baggage because you have a chronic illness. Push back on this and do not check all of your diabetes supplies. Never check insulin.
• Always have a syringe in all your bags and inside your glucometer. It will save you when you are away from your hotel/hostel.
• Bring a backup glucometer. I forgot mine on a bus in Istanbul on my first day of a six week trip. Thankfully, I got a new one at a pharmacy nearby. They don’t have One Touch.
• Always have a low snack or glucose tabs in a day pack. Going on adventures and hikes in nature is great, but food may not be nearby.
• BRING PROTEIN BARS! Some trips estimated at a few hours turn into five, bring something hearty to keep you at a good blood sugar level.
• In Spanish, insulin pump is bomba de insulina.
• Check often. Abroad you will not know what you are eating all the time or the carbohydrate amounts.
• You are no longer operating in a consistent schedule, so you may not be as sensitive to blood sugars and you will experience highs and lows on planes and in-country. Don’t worry.
• Do not listen to roller coaster warnings for diabetics.
• Do not let T1D limit your travel or experiences. We can do anything non-diabetics can; we are just a bit more prepared.

6. What is the best advice you would give to the family of a newly diagnosed person?

Engage the many resources around you. The best way I have done that is through camps for kids with type one diabetes, and more specifically the Chris Dudley Foundations (http://www.chrisdudley.org) Basketball Camp for Kids with Diabetes. I have been attending the week long camp in Vernonia, Oregon for the last decade: four years as a camper and six years as staff. The community that is created among 75 campers from all over the country, Canada, and even Turkey is incredible. Everyone understands each other and shares experiences enabling them to feel empowered to live active with diabetes. In fact, almost the entire staff were campers themselves. Chris Dudley, retired from the NBA after 16 successful years and studying at Yale, has had T1D since he was 16 years old.

Learn more about JDRF and Garrett by following his twitter @GarrettJens. 

Mum of Type One: Raising A Child With Diabetes

1. What is your connection to diabetes?

My middle son was diagnosed with Type 1 diabetes almost 2 years ago and celebrated his 13th birthday in hospital. We had noticed he was thirsty, tired and was going to the toilet a lot. Having seen a colleague’s child diagnosed, I was familiar with the symptoms and got him to the doctor quickly. I’ll never forget the drive home from the hospital: very reminiscent of bringing your baby home for the first time: wondering if you are up to the job and if you can really do it!

2. What is the most challenging part of having a loved one with diabetes?

Not allowing Type 1 diabetes to define my son, me or my family. I felt swallowed whole by this disease when my son was first diagnosed but reminding myself that it’s not me who has diabetes and using the years I have with my son, before he leaves home, to help him to learn to manage it as best he can has become my focus.

Allowing my son to be a normal teenager is really important. I do not expect perfection but I do expect honesty. If Blood Glucose levels have gone crazy, we look back over the day and try to figure out what may have caused it. I never, ever blame. So far this has worked well.

Not letting diabetes dictate what you do is also a challenge. Your instinct on diagnosis is to batten down the hatches and huddle together. I’m so thankful for the advice of our educator to fit diabetes into our lives and not vice versa. My son has played several sports to a high level, has sleepovers, goes on school camps and makes the most of life. As a family, we are really busy. We have camped, and travelled overseas. Next year my son and husband will go on a club rugby trip to Fiji.

Not letting diabetes overtake your normal parenting decisions can be hard too. Teenagers should and must push boundaries and take risks and then learn from the consequences. Even with Type 1 diabetes, and all the complications it brings, teenagers thrive knowing there are rules. We have all the usual situations in our house with the three boys. None of us are perfect.

Realising that you can follow all the diabetes rules and it still can go pear shaped, was a big learning curve. Hormones, stress, sport and many other factors can swing in from left of field and knock everything out of whack. Keeping calm and working with your team to try to figure out the way ahead is about all you can do.

3. Has diabetes coming into your lives changed your family dynamic?

I’d be lying if I said it hasn’t at times. It’s the first thing that comes into my head most mornings and the last thing I think of at night. It follows us around in what we do: sometimes it’s like a stroppy toddler, demanding and moody but at other times we almost forget it’s there.

In some ways, I think we are better people. I notice that we don’t stress the small stuff any more. I’ve always tried to have the approach of looking at any problems and then thinking of how we can fix them: friendship issues, problems at school. These things can generally be fixed, unlike a broken pancreas!

I really believe too that having someone in your life with a chronic illness makes you look at everyone else differently: you tend to look a bit deeper and see past the obvious. I try to be a kinder person since my son’s diagnosis and I see this too in how the rest of my family interacts with other people.

4. Have you adjusted the way you cook for the family at all?

We have access to a great dietitian who told me not to rush out and buy all the diabetes cookbooks. I ignored her, bought them and have hardly looked at them! We basically eat the same, but a healthier version. I bake and make lots of snacks and have found I can cut out so much of the sugar but cakes and biscuits still taste great.

My son has grown 10 cms in less than a year so he and his two,very tall, brothers take a lot of filling! I try to stock the cupboards with healthy options and we talk about how foods can be low or high GI and the impact of that.

In amongst all this, I am very mindful that my son is a normal teenager. There are times when he goes out with his friends to hang out or play sport and I don’t see him for the whole day. He manages really well and eats just like every other teenage boy on those days.

5. What is the best advice you would give to the family of a newly diagnosed person?

Be gentle on yourself and take it easy. Find a couple of people you can talk to and confide in. I’ve got less friends than I had but those I have were there for me through the early days and now I feel lucky, as I know who I can count on.

Avoid the people who like to tell you scary stories. Sometimes people have no filter between their brain and their mouth. I try not to blame them but I do not seek out their company.

Don’t get too excited every time a cure is announced. Staying positive for the future is important but I’ve lost count of how many cures have been announced in the last two years.

Exercise is a great stress reliever. I go for walks a few days a week and find I feel so much better.

Be pro-active in getting your child’s school to do the right thing. I was afraid of being a ‘helicopter parent’ initially but now I am much more direct. It only takes one scary incident and you find your inner strength. Don’t mess with the mum of a child with Type 1 diabetes!

6. How has the Internet helped you?

I avoided the internet for most of the first year as there are so many scary stories out there. Once I had more of an understanding of how my son was doing and the basics of diabetes management, I jumped in again and found I was more drawn to blogs and more recently to twitter.

I made the decision to start my own blog in May 2015. It’s my therapy as, in my day to day life, I don’t talk about diabetes very much at all. I know there are people in the Diabetes Online Community who get what I’m saying and I get a lot of information and even a few laughs from this lovely group of individuals. I feel like I have found my tribe.

Learn more about raising a child with diabetes by following Mum of Type One’s fascinating blog or stay connected through twitter @mumoftype1

Frank: Diabetes Online

When were you diagnosed and with what type of diabetes?

I was diagnosed with type 1 at age 17. The doctor that I went to see failed to diagnose my initial symptoms, and a few days later I ended up in hospital with diabetic ketoacidosis. I’m glad it happened that way, because it connected me to the diabetes clinic at my hospital. I’m not sure if I would have received the same support otherwise. I was also really happy that all my symptoms were gone, so having diabetes didn’t feel like a huge setback. I’m not sure how well I would have reacted to the news if I was diagnosed in the doctor’s office and sent home.

What is your greatest daily struggle?

Food. I have a reasonably healthy diet, but I struggle with the snacks and temptations in between. I’m a terrible sweet tooth. I could easily eat a whole block of chocolate if it was acceptable, and I have become a bit obsessed over finding the perfect Cannoli. I grew up eating junk food every day after school, and it’s been a difficult habit to break since being diagnosed with diabetes.

Has diabetes ever affected your schooling or career?

I count myself very lucky that I was diagnosed after I had finished High School. Although having diabetes in school might have forced me to be a little more open about my condition than I am now. I have definitely drawn upon my Marketing and Communications degree in building my diabetes blog and online presence. I’ve become extremely passionate about diabetes advocacy through my blog, and I would love to make a career of it someday.

How has blogging affected your diabetes management? 

Before I started my blog, I knew nothing about diabetes beyond my own ability to live with and manage it. I never would have guessed that there was even such a thing as the Diabetes Online Community (DOC). Joining the blogosphere and the DOC really ignited my passion for blogging and diabetes advocacy. I love blogging because it makes me think about my diabetes management every day. It’s nice to have my own space to vent, and I find it therapeutic being able to reflect on a situation when I’m in a better headspace. I feel the best about my diabetes in 2015 than I have in any other year, and I credit that to blogging and interacting in the DOC. The people in the DOC provide a daily source of support, inspiration and motivation. I barely know anyone with diabetes in real life, so it’s nice to have somewhere to talk with people who just “get” it. And I really relate to these guys because they aren’t celebrities or athletes…they’re ordinary people living with diabetes, just like me.

What is the best advice you would give to a newly diagnosed person? 

I would tell them about the wonderful Diabetes Online Community. I would encourage them to create a Twitter account. Join in weekly support chats such as #OzDOC and #DSMA. They’re a great place to introduce yourself and make connections with other people with diabetes. Read diabetes blogs and take an interest in the diabetes world. There’s so much valuable information and support out there to gain. I really wish I had found the DOC a lot sooner than I did.

Has there been a moment in your life when you were grateful for having diabetes?

I don’t know if I would ever say I’m grateful for having diabetes, but I’m grateful for the opportunities that have come from it. I am finally living my dream of being a successful writer every day through my blog thanks to diabetes. I was really proud to be able to advocate for access to test strips in Australia through my column for Insulin Nation. It even resulted in a small policy change from Diabetes Australia. I also feel really fulfilled to have a purpose and passion beyond my day job.

Read more articles from Frank by following his blog Type 1 Writes and keep up to date on twitter @FrankSita. You can also learn more about Frank by liking his Facebook page!  

Joe: Joining the Diabetes Community

When were you diagnosed and with what type of diabetes?

“I was diagnosed in 1999 with Type 1 Diabetes.”

Has there been a moment in your life when you were grateful for having diabetes?

“There’s never been a single moment where I’ve thought ‘Thank God, I’m diabetic,’ but I think having the disease has made a huge, and mostly positive difference to my life. For example, I think it was thanks to the discipline I had to develop when managing my glucose that helped me work hard and get in to Oxford University. And I’m pretty certain that if I wasn’t diabetic I wouldn’t have run the London Marathon, having to marshal the disease as well as condition my body gave me the extra motivation to even begin training. I wanted to prove to myself that diabetes wasn’t going to stand in my way.”

Have you done anything to benefit the diabetes community?

“When I was 18 I wrote “Joe’s Rough Guide to Diabetes” to help people learn how to take control of their glucose while living a normal life. It was published by Wiley and 20,000 copies were bought and distributed by Sanofi. Since then I’ve re-written the book for a second edition, and designed “Joe’s Small-in-one”, a carry case designed to take all you need for 24 hours. Together, these products mean that you can learn how to manage your diabetes and very conveniently put that knowledge into practice.

I give talks about diabetes to lay and professional audiences, telling people what it’s like to live with a long-term condition, myth-busting and helping to improve the relationship between healthcare providers and their patients.

I chair the project management group of a joint King’s College, London – Warwick Medical School study looking at the impact of digital communication on the treatment of long-term conditions in the NHS. And I encourage all diabetics to get involved with research if they can – it’s a fantastic feeling to be helping to shape the discussion of what future healthcare should look like.

I am also now working with Sanofi to create an innovative patient event for World Diabetes Day. It will be the first of its kind in the UK, bringing together people with both types of diabetes to talk about the issues that really matter to us.”

Does diabetes define who you are?

“In some ways, it does, yes. It’s impossible to be involved in trying to improve the treatment of the disease without being defined by it in some way. On a deeper level, I think it defines me in that the major achievement of my teenage years was learning to take control of my diabetes and overcoming the stigma of disability I felt upon diagnosis. But there’s definitely more to my life than just diabetes. I’m lucky enough to be in a loving relationship, I have great family and friends, I have a penchant for bad jokes, I laugh loudly and (I’m told) I talk a lot. On top of that, I’m writing a Tudor novel! Of course, all those things will be tinged with diabetes if you think enough about them, but mostly I think of myself as ‘Joe’, not ‘Joe the diabetic’.”

What is the best advice you would give to a newly diagnosed person? 

“I think the fundamental thing if you’re newly diagnosed, is to take responsibility for your diabetes. It’s a nasty shock and it’s hard to take sometimes that you’ve lost a bit of your freedom. I know I found it difficult. But once you have the mind-set that says ‘this is my problem and I am going to find a way to solve it’ everything flows from there. After that, look to get educated, learn to carb count, and discover how exercise and alcohol and illness effect you. Don’t be afraid to experiment, one high blood sugar may feel a bit horrible but if you learn from it, it can give you a lifetime of understanding and improved control.

Oh, and get on a pump! They don’t work out for everyone, but mine’s been a blessing. It restores almost all the feeling of independence you can lose on diagnosis. And it doesn’t feel weird, honest!”

What is your greatest accomplishment? 

“There are a few things I’ve done that I’m proud of: getting in to Oxford, getting a Distinction in my first year (I’m a geek, sorry!), writing the book and then having it published, giving a talk to about a thousand people at the Diabetes UK Professional Conference, designing the Small-in-one and seeing it sell, appearing in the Times to give an interview about diabetes, running the London Marathon, and (fingers crossed) writing a novel before 30. But I think my greatest accomplishment has been much less obvious than any of those; overcoming the depression I felt after diagnosis and taking control of my life. Without that, none of the other achievements would have been possible.”

Thank you Joe for sharing your story. Learn more about Joe, his book, and any of his adventures by following his twitter @joesdiabetes. You can also purchase the small-in-one by clicking here!