#IWishPeopleKnewThatDiabetes....

Some of you may have come across the Hashtag #IWishPeopleKnewThatDiabetes..... over the last year, which is the brainchild of Diabetesaliciouness blogger, Kelly Kunik.

I met the superwoman herself last July at the MasterLab Diabetes Advocates conference. On that first morning, as I took a deep breath and joined a table of strangers. I know, I'm a very grown-up woman but I still have to force strongly encourage myself to do these things because I know I'll regret it if I don't.

Anyway, I did not recognise anyone but as soon as the ladies started conversing and using their first names, I started to connect the "who" to the "blog" and figured out that the girl sitting right beside me was Kelly.

Kelly has lived with type 1 since she was 8 years old (that's 38 years), and comes from a long line of direct relatives with type 1 diabetes, including her sister who died in 1991 from complications at the age of 33. Kelly gave an indept interview in August to Diabetes Mine in which you can read lots more about her and why she does what she does.

The #IWishPeopleKnewThatDiabetes hashtag and the #IWishPeopleKnewThatDiabetes Day, (22nd April 2015), were inspired by 3rd grade teacher, Kyle Schwartz and her #Iwishmyteacherknewthat hashtag, which was heartbreaking.

Photo cortesy of DiabetesMine.com

Kelly says that "This day is about people living with diabetes taking to twitter and using the hashtag in unison for a 24 hours period to express the good, the bad and the diabetesalicious of it all."

The #hashtag and day took on a life of their own with over 16 countries participating and generating over 17 million twitter impressions to date.

The IWishPeopleKnewThatDiabetes hashtag has now become an initiative, a movement and a call to action where people can express themselves past the 140 character limit and in various multimedia formats. Kelly launched the "Iwishpeopleknewthatdiabetes.org" website last November. She (and I) encourages everybody to visit the website and submit your own "what you wished people knew about diabetes". You can also read some guest posts from rock stars in the Diabetes Community and some totally-not-a-rock-star-or-even-close people's guest posts (i.e. yours truly. I was so honoured that she asked!!!)

IWishPeopleKnewThatDiabetes.org is well worth a visit.

Diabetes Complications are Not a Sign of Failure

The complications of diabetes are real and people are living with them. People are also living in fear of them. Myself included. I am actively trying to overcome this fear because if I do end up with complications I don't want to feel like it is the end of my life. Or that I failed to manage my diabetes well enough. And I certainly don't want to be made to feel that it's my fault.

I don't believe just because I am doing everything in my power to manage my diabetes that I will be spared. I believe that if I have type 1 diabetes I still have the risk of developing complications. I strive to keep that percentage of risk low but it will never be zero.

I will not stop trying!

Image from http://www.coolnsmart.com/failure_quotes/

So, when a friend of mine, who has lived more than 50 years with type 1 diabetes and who lives with a number of the complications of diabetes, comes to our T1D meet ups and people imply she didn't take of herself, I get a little "upset"!

My friend has survived taking care of her diabetes when there was no such thing as a glucose meter! Imagine never know what your blood sugar was?!?

She has survived during a time when the phrase "carb counting" might as well have been a foreign language in Ireland. It didn't exist!

We also did not have Rapid Acting Insulins until the late 1990's. So, even if we did practice carb counting, it wouldn't have been much good to us. Sure, we could do a certain amount of carb counting on the insulins we took only twice a day but we couldn't fine tune it like we can today.

We also did not know that the tighter your diabetes control, the less likely you were to be at risk of getting diabetes complications. This research was only published in 1993 as the DCCT Trials.

93 years ago we died! Today, we have so many tools, technology and instant access to research that people with type 1 diabetes, who have been told for decades what they can't do are breaking all of those barriers.

So I ask you? Is surviving 50 years with type 1 diabetes and living with complications really not taking care of yourself?

My friends who live with diabetes complications may even say themselves, that they didn't do as much as they should have to take care of their diabetes. And I say you did the very best that you, and everybody else, knew how.

I am so lucky and proud to have friends like Deniabetic, who are helping me overcome my fears.

Starter Kit; A Guide for Adults with Type 1 Diabetes

Starter Kit; A Guide for Adults with Type 1 Diabetes.

This is a little project I had been working on since 2010 and I'm thrilled to announce that it's finally HERE! I came across the Starter Kit on an Australian website and thought it was a very valuable and informative document. I showed it to a few of my friends with type 1 who agreed. At this point I realised that there was a lack of educational booklets for people with type 1 diabetes living in Ireland. So I approached Diabetes Ireland, the only organisation for people with diabetes in Ireland and they encouraged me to undertake the project as they have limited resources.

 

I believed that the book would make a big difference to supporting people with type 1 diabetes and I delved in.

 

I, with the help of many Irish health professionals, especially Dr. Anna Clarke, Diabetes Ireland adapted this book from its original format, which was written by the Type 1 Diabetes Network; a group of young adults with type 1 diabetes in Australia. We sincerely thank them for giving their permission to adapt it for Ireland.

 

The Starter Kit is for newly diagnosed adults and contains lots of useful information on how to adjust to life as a person with diabetes, such as a “checklist of stuff to do within the first month after diagnosis” and “10 things we wish someone told us the day we were diagnosed”.

 

Established adults with type 1 diabetes and adolescents who have recently transitioned into the adult world of diabetes will find the Starter Kit useful too.  It includes information about where to find peer support, recommendations for books and websites, and links to all public resources available to a person with diabetes.

 

Everybody will appreciate the Cheat Sheet: this is a two-sided page of information aimed at those without type 1 diabetes.  It is there for you to copy and share with your family and friends and can help you get on with living your life rather than feeling compelled to be the “font of all diabetes knowledge.”

 

I hope that this book will help guide you on the right path to managing your diabetes successfully and open a world of support to you.

 

The Starter Kit is available to download from Diabetes Ireland’s website, however, you can get yourself a hard copy of this book also by contacting them on LoCall 1850 909 909 or by emailing your request to info@diabetes.ie

Getting the New Technology & Treatments for Diabetes.

So you’ve heard about the benefits of the insulin pump and continuous glucose monitors and sensors. And you’re thinking “I might just get my diabetes under control if I have one of those”

How do I get one? Well the answer is that it’s not as easy as just deciding to get one.

In Ireland, people with diabetes get all of their medicines and medical supplies, relating to diabetes for free on the Long Term Illness Scheme, which is fantastic! However, when a new treatment comes on the market such as the insulin pump which costs €5,000 and then about €100 plus per month for the supplies, not to mention what it costs to have specially trained medical staff on call 24/7 to support the pump user, the people who foot the bill start to ask questions. Understandable!

So, the most common replies to questions about the pump are that there are problems with funding the staff needed to provide pump support. (I might add here that the suppliers of the pump actually provide the patient training.) Then, you will be told that the HSE won’t approve the funding for the pump.

It is a very savvy customer/patient who will pursue this quest after that.

So what happens if you want something like a glucose sensor? And your medical team just won’t discuss it with you. The supplier, obviously, wants to give it to you; you’ve done your research and decided that you want it. Surely, there is a way that you can overcome these problems.

Maybe it’s time for the Health Insurance companies to join this debate. Maybe in order for them to prevent us from claiming huge medical bills for kidney disease, limb amputation, hearts bypass surgeries, etc., they should be working with Roche, Abbott, Animas, Medtronic, etc. and helping people with diabetes manage our disease better?