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

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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

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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

Joe: Joining the Diabetes Community

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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?

JoesDiabetes_BookCover“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? 

2013-04-21 15.13.11“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 Small-in-one_1Professional 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

Michael: “Data save lives and limbs”

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When were you diagnosed and with what type of diabetes? 

2002, diabetes mellitus type 2

What are your greatest daily struggles?

I was diagnosed at age 52. A conventional analysis would say I had developed sedentary and overeating habits in childhood that drove the expression of a genetic predisposition to T2DM. An alternative analysis would suggest that undiagnosed childhood insulin resistance and neuropathy drove the development of those habits, and precipitated a vicious cycle. In either case, I have half a century’s habits that make me “more diabetic” unless I counter them with more-than-habitual activity and more strategic eating. For me, glucose data are a much better motivator of this discipline than are weight or even belt-notch data—which brings us to the struggle to obtain adequate testing supplies in the face of a government-insurance establishment that rations them to essentially useless levels. And by the way, when I manage glucose levels, the weight and waist-size numbers fall with them.

Have you found any good things about having diabetes?

I’m healthier now than when I was diagnosed. Had I continued along the behavioral path I was on before diagnosis, I might well be dead by now. Also, the research I started reading and evaluating to save my life contributed to my current career as a clinical research editor and interpreter.

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

Data save lives and limbs. Learn how diet and exercise affect your glucose levels, and develop habits that nurture good levels. Nag, beg, wheedle, plead, demand, and save your pennies for adequate testing supplies to manage your condition. Accept additional medical help if your particular diabetes cannot be managed with diet and activity alone.

Does diabetes define who you are?

No.  It’s defined certain choices and possibilities in my life. That includes both limitations and opportunities.

Thank you Michael for the brave and inspirational responses. To learn more about Michael and keep up to date on his battle with diabetes follow his blog diabetes2remission.blogspot.com! You can also follow him on twitter for daily updates @T2DRemission

Caitlin: Teen Diabetes

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When were you diagnosed and with what type of diabetes?

I was diagnosed when I was 7 years old on November 13, 2004 with type one diabetes

Does diabetes define who you are?

Diabetes defiantly plays a big part of how I am but does not define me. Diabetes helps me view things differently than other people

How has diabetes affected your high school experience?

11058084_10153102591279965_4201670657302255517_nHonestly diabetes hasn’t affected my high school experience. Of course I’ve had to sit out for a little bit participating in activities while I chug back a juice box or two, but other than that it hasn’t really affected me. Although all my friends love that I had juice boxes in my locker always

Why did you start blogging?

I started blogging because in my small city of Sault Ste Marie Ontario,Canada there was not any type one diabetics in my age group,let alone many type one diabetics, so I decided to turn to the internet and got loads of positive feedback.

How has getting involved in the diabetic community helped you deal with your diagnosis?

It has helped me know that I am not the only one that struggles with being a diabetic. People see you as a healthy person, then you tell them that you are diabetic they automatically assume type two; that you just have to watch what you eat and take your blood sugar. When in reality it taking your sugar at least 3 times daily, eating, taking care of lows and highs, being tired, waking up through the 11218751_10154036325144129_3438217387330541119_nnight to check your sugar. There is a lot to diabetes that doesn’t meet the eye

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

I would tell them “Relax. Your life is not over. It will be tricky at the beginning but eventually it will work itself out. I’ve been diabetic for 11 years and I’m learning new things each day and I still struggle.

Keep up with new stories about Caitlin by following her blog. You can also get to know Caitlin better by liking her Facebook, twitter, and Instagram!

Kris: Type 1 Is Not Going To Hold Me Back

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

I was diagnosed with type 1 diabetes later than most at 25 years old in 2012. So I’m still quite new, however it already feels like a lifetime!

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

My diagnosis was devastating at first but it led to a new career that I love, living in a new city that I love, where I met my girlfriend who I love! I’m a strong believer in things happen for a reason and something good always comes from something bad in life. I’m happier with life post-diagnosis, even though I need to live with this disease for the rest of my life.

3. Why did you start blogging? 

I started blogging fresh out of hospital as I’ve always found writing a therapeutic way to get things out. I have also been fortunate enough to take part in a few research projects that were really interesting and fun to take part in so wanted to tell the world and spread awareness of taking part in research.

Online diabetes communities are huge and very active, especially on social media. I get a lot of comfort and support from people in the same position as me, but they can be anywhere in the world.

4. Has diabetes affected your ability to exercise? 

For the first year, exercise was avoided. It was just too much to deal with on top on everything else, plus my job at the time was extremely active so that keep the blood pumping.

In 2014 I climbed Kilimanjaro, which involved lots of training. Preparing for this challenge opened my eyes to the power of exercise to manage your levels. I’d always thought exercise would make things more complicated but over the long term it stabilises the fluctuations, mostly.

Occasionally, when I want to exercise and my diabetes isn’t behaving, it stops me but this is rare and is not an excuse to never exercise.

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

As much as this disease is a burden on your daily life and frustrating as hell, it’s a condition that can be managed. Your future is in your hands and not your doctors, unlike most other chronic conditions. You will become an expert at nutrition, maths and understanding your body. You will become more disciplined and organised. Type 1 turns ordinary people into super heroes.

My best advice is find others with type 1 and make an effort to connect with them from time to time. Type 1 can make you feel lonely so there’s nothing better for your outlook than using others in the same position to bounce off. Whether that’s online, your local hospital, charity support group or your school or work place.

6. What is your greatest accomplishment? 

I mentioned it earlier but my biggest achievement is climbing Kilimanjaro with type 1 diabetes. I never thought I could do something like this before I was diagnosed with type 1 but to do it with a condition that’s so demanding was a real achievement for me and built my confidence up a lot. Having the condition has made me more determined and I push harder with everything I do in life now. Climbing Kili hard, painful, frustrating at times, mentally and physically draining but by far the most rewarding things I’ve ever done. I showed myself that type 1 is not going to hold me back.

Continue reading about Kris’s adventures and challenges with type 1 diabetes by following his blog www.diabeticbanana.org or twitter @diabeticbanana.