Ireland Insulin for All

A few weeks ago, I went to an event in the Diabetes Ireland care centre in Dublin. It was the launch of their 50th year anniversary, which I wrote about here. Chairperson, Hilary Hoey mentioned that the first Annual General Meeting took place on April 2nd in 1967 and it was there that the committee declared their first mission was to make insulin free to people with diabetes.

Two months later it was!

And in 1971, all other diabetes supplies were included on the newly launched government sponsored Long Term Illness scheme, which every person living with diabetes avails of today.

Hilary also said that people with diabetes were the first group of patients in Ireland to come together and take control of what they needed to manage their health.

I will never take this for granted! But I can’t stop thinking about all the people with diabetes in the world who still don’t have access to the basics of insulin and test strips. Even those, living in the richest nation of the world, are struggling to pay for their insulin. The only way I know how to help is to blog about it and stand in solidarity with my fellow people with diabetes around the world.

I’ve been thinking a lot about where the journey of insulin began, how it got here and how we might help improve access for ALL.

Over the Christmas holidays, I read the book BREAKTHROUGH: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle. I found it fascinating; I couldn’t put it down.

The book begins its story in 1919 with how the idea of reproducing insulin came about and follows all the key players; Frederick Banting, Charles Best, Eli Lilly and Company and Mr. and Mrs. Charles Evans Hughes, one of the city’s most highly respected and recognizable citizens, and their daughter, Elizabeth, who was one of the first patients to receive insulin.

Back in 1922, those who were treated first were the patients who could afford to send their children to places like the Joslin Diabetes Centre. Those who survived long enough to be treated were those who could afford to send their children to specialised hospitals. It would seem that the world hasn’t changed all that much between the haves and the have nots in one hundred years.

Renza from Diabetogenic talks in her post a few weeks back about being conflicted between her excitement about new technologies in diabetes treatment and how most people in the world won’t have access to them.

It’s odd to think about how the world has changed and how it hasn’t.

Yes, in those 95 years since insulin was first manufactured, the majority of the world's population of people with diabetes do have access to insulin. We are grateful BUT we should never forget about those who do not have access. We need to fight for them. They need us to help them fight for them. Let’s try to remember that!

We can do so by supporting organisations such as;

• International Diabetes Federation's (IDF) Life for a Child Program
• Sign T1 International's Type 1 Diabetes Access Charter
• Donate any unwanted, in-date insulin in your fridge to UK organisation; InDependent Diabetes Trust (IDDT)  who are part of the Insulin for Life Program
• Support JDRF's #Coverage2Control which calls on US health insurers to provide three things for people with T1D to help them control their disease, including: 1) keeping out-of-pocket costs for insulin and diabetes management tools predictable and reasonable, 2) giving people the freedom to choose the insulin pump that’s right for them; and 3) covering all life-saving technology, including artificial pancreas systems.

From the book jacket of BREAKTHROUGH: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle (St. Martin’s Press: September 2010: hardcover) by Thea Cooper and Arthur Ainsberg.

1922: The first patient, Leonard Thompson a 14 year old boy with type 1 diabetes is given the first medical administration of insulin. Previously patients with type 1 diabetes would be put nto starvation diets and would have only months to live. Leonard lived another 13 years before succumbing to pneumonia.

1922: As news of insulin’s success spread, Banting and Best begin receiving letters asking for help for others with type 1 diabetes. Banting and Best improve their techniques for the production of insulin and Eli Lilly becomes the first insulin manufacturer.

“In 1918 Elizabeth Hughes stands in the kitchen of her family’s elegant townhouse in New York City, fiercely gulping water from a glass. She is the daughter of Charles Evans Hughes, one of the city’s most highly respected and recognizable citizens. Although Elizabeth doesn’t yet know it, she has what was then an unerringly fatal disease – juvenile diabetes mellitus. In a few short months, what had been a happy, active childhood will be eclipsed by the mounting symptoms of ravenous hunger and insatiable thirst.

In Toronto, a surgeon named Frederick Banting and a student named Charles Best succeed in purifying insulin from animal pancreases. Within months this miracle is nearly derailed by scientific jealousy, intense business competition, and at least one fistfight. In a race against time and a ravaging disease, Elizabeth becomes one of the first diabetics to receive insulin injections. As less fortunate children die, the discoverers work with a little-known pharmaceutical company named Eli Lilly and Company to make insulin available.”

My Diabetes Blog Anniversary

Last Wednesday was the 7th anniversayof the day I published my first blog post. It felt good, yet so nerve wrecking. I wrote a bit about my diagnosis, taking control of diabetes and how I found myself where I was back then.  I still don't know the answer to Why diabetes? And why Me?  Here it is....

Why Diabetes? Why Me? 24th May 2010 - Grainne Flynn

When I was diagnosed with diabetes, it was 1993 and I was a 20 years old student; living the typical student life.

That all changed with diabetes. For a very long time I only knew what I absolutely needed to know about diabetes to survive. I fought it but not in a good way. My attitude was that diabetes was not going to get in my way! My friends and family would ask about it and how I was getting on, I replied “fine”. I had no idea of how I was doing, health wise, my medical team didn’t talk my language, I didn’t asked questions, and I didn’t want to be there.

What changed? I met my now husband who had decided I was worth having around for a long time, and convinced me I was worth it.

I started internet searching for information on diabetes to give to him and I started learning about diabetes for myself. Things like how exercise affects my blood sugars, about how insulin works once I inject and how food affects that process and lots, lots more. I even met another person who had type 1 diabetes who I couldn’t push away because she was the wife of my husband’s friend.

Through this friendship, I realised how important it was for me to have people my own age around me who knew what having diabetes felt like.

I’ve come a long way since then. I started a support group for people with type 1 diabetes in my home town in 2007 and my diabetes family has grown quite a bit. People call me with their stories and I listen, hoping that in some way I’m helping them. I wished that I had had someone I could’ve talk to in the beginning but knowledge about diabetes was poor back then.

Now, I want to inspire people to go out in search of the knowledge they need to live a great life with diabetes. I want to encourage people to start reading the numerous books on the subject and to find other people with diabetes on the internet or in their area. More and more supports groups are forming around the country and if you don’t have one in your town yet then find us on the internet. We’re here!

http://bloodsugartrampoline.com/index.php/2010/05/24/why-diabetes-why-me/

How to Read the Nutritional Label: The Basics

I read this piece a while back about 3 important things you really need to know from a food label as a person with diabetes. It was really good. However, the labelling laws differ between the US and the EU, so I thought I would adapt it a little for those of us living with diabetes in Ireland. DISCLAIMER ALERT - I am not a medical professional, I am not a dietitian or nutritional coach. I am only a person living with type 1 diabetes for 24 years with a very hungry quest for knowledge and have learned a thing or two about my own diabetes. ALWAYS consult with your diabetes team.

https://www.diabetesdaily.com/blog/3-critical-food-label-elements-every-diabetic-should-understand-373385/

Here’s is what I have learned over the years about how to approach food labels living in Ireland …. After I fish them out of the bin;-)

From Diabetes Daily’s “3 Critical Food Label Elements for People with Diabetes” (In Ireland)

“#1: TOTAL CARBOHYDRATES

The most important thing, initially, for people with diabetes to decipher on the nutritional label is the carbohydrates. When you look at a label, find the number of carbohydrates.

There will be a number of grams (”g”) and a percentage to the far right. You can use either to work out the amount of carbs on your plate.”

I usually use the percentage, then serve and weigh my portion using a digital weighing scales. Then calculate the number of carbs in my portion.

So if I put 100g of rice on my plate and I know the percentage of carb in cooked rice is 30% (100 x .30=30g).

#2: FIBER AND NET CARBS

THIS IS WHERE THE BIG DIFFERENCE BETWEEN IRELAND / EUROPE AND US IS. Under EU law, our labels have already subtracted the dietary fibre. And we don’t have total or net carbs on our labels.

“Fiber is actually a type of carbohydrate that is not digested by our bodies. Since it’s not digested, it doesn’t affect our blood sugars. WHEN VISITING THE US REMEMBER TO SUBTRACT FIBRE! ** People visiting Europe from the US please remember to ignore the fibre.

“OF WHICH IS SUGARS / Sugars Are Included

This is usually directly under carbohydrates. ”This would refer to simple, unrefined sugars, such as the white, granular stuff commonly called “table sugar.” It also includes any other simple sugars, such as fructose found in fruit. Both the sugars that are naturally occurring in the food and any added sugars are included in this number.

The number of sugars are already included in the “Carbohydrate” figure, so you don’t need to count them separately.”

#3 SERVING SIZE

In Ireland, the label is given as per 100g/ml and/or per serving. This makes carb counting really easy.

I use the carb factor (which represents the percentage of the food’s weight that is carbohydrate. This is found under the “Per 100g” column on the nutrition label).

Food Weight (in grams) X Carb Factor = Carb Count

“Often the serving size will seem like a much smaller portion than you think is reasonable. It takes actually measuring out your portions to learn to recognize (and reprogram your thinking) a “reasonable” portion. Try this experiment: take your favorite snack and put on a plate or a bowl what you think a single serving should be. Then check the package for the serving size and pull out your weighing scales. Will the amount you’ve already portioned out fit in the appropriate measuring device? Does it overflow?

Now you have a better sense of how much an actual serving size is for this particular food, and when you go to the nutrition label, you’ll be getting the facts that match that amount.

An easy way to reduce your carb intake without changing much else about your diet is to simply reduce the recommended serving size. Conversely, it’s also really easy to wind up eating too many carbs, even when you think you’re doing well by eating low-carb foods, because you’re actually eating more than one serving at a time.”

I really did enjoy reading Rebecca Dugas piece, especially the story she recounts leading into it. Rebecca is a vegetarian and sometimes struggles with her low-carb, plant-based diet. She created the website Diabetic Herbivore to help other diabetic vegetarians to survive and thrive through information, recipes, resources, reviews, education, and support. http://www.diabeticherbivore.com/

I do feel that our food labels in Ireland and the EU are a little less complicated though.

If you would like to delve deeper into food labels, here's a leaflet from Diabetes Ireland produced a couple of years ago.

Diabetes Blog Week Day 5 - More than Diabetes

This week is the 8th Annual Diabetes Blog Week and my second year participating. Diabetes Blog Week was started by and is still instigated by fellow type 1 Karen Graffeo in Connecticut who blogs at Bitter~Sweet Diabetes​. This week is as a way for Diabetes bloggers (well over 100 participants from ALL OVER the World each year!) to share a huge variety of perspectives on issues relating to our illness. Learn more about Diabetes Blog Week here. #DBlogWeek

Diabetes Blog Week Day 5 - More Than Diabetes

Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! (This topic is a suggestion from the 2016 #DBlogWeek survey.)

Weeellll, this post could be dangerous. I’ve had a whole life (20 years before I was diagnosed) outside of diabetes that could fill a book really. Or maybe I’m just flattering myself.

So, here are a few things that not many people outside of friends and family know about me;

At age 17, I ran away to the circus.

No, not really:-) When I finished second level education I was done with books. I had no clue what I wanted to do but I knew it was not going to involve more school. My parents begged me to do a secretarial course and I would have rather DIED!!!

So I decided to try to become an actor or at least involved in theatre. And off I went to acting school for 1 year and then I got into a more advanced course and did two years more. I had pretty much figured out that I was hopeless at it by my 3rd year. So when I was diagnosed with type 1 diabetes in this year it told me that I should run.

I’m Crafty, some might even say in more ways than just one;-)

When I lived in Minnesota I discovered the craft of scrapbook style photo albums and I loved it. I’m always the one with the camera taking photos and putting prints into the classic photo albums (you know, when we did that) and then quickly forgot the story that photo told. Scrapbook style photo albums just made sense to me.

I started “scrapping” in earnest when I moved to Minnesota, it filled the time while I was job hunting. It also helped me figure out what I was going to do with my life a year later when I left that job because I was miserable. Being a secretary or admin personel just wasn’t cutting it for me.

I also knit a wee bit and crochet - although it's been a while for all three. Something keeps me busy???

And this may be the “Shocker”, especially to Irish people! I am 100% Irish!

No seriously, it’s true. Yes, I have this warped and weird accent but I was born in Ireland. I’ve lived here almost all of my life, apart from the four years I lived in Minnesota. My husband, who is actually american, is never asked where he is from. I, on the other hand, get asked a lot. And when I say “Clare” people are surprised. One person replied “I wasn’t expecting that answer”. My response was “Well, I’m originally from Co. Offaly, but you weren’t expecting that answer either.”

And there you have it! A little something about me outside of the world of diabetes, two children and a husband;-)

Diabetes Blog Week - Day 4 What brings me down

This week is the 8th Annual Diabetes Blog Week and my second year participating. Diabetes Blog Week was started by and is still instigated by fellow type 1 Karen Graffeo in Connecticut who blogs at Bitter~Sweet Diabetes​. This week is as a way for Diabetes bloggers (well over 100 participants from ALL OVER the World each year!) to share a huge variety of perspectives on issues relating to our illness. Learn more about Diabetes Blog Week here. #DBlogWeek

Diabetes Blog Week – Day 4 - What Brings Me Down

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.) I seem to be in a good place with my diabetes management at the moment, as I’m blogging less about my own diabetes experiences and more about what is going on in my wider diabetes bubble.

So my “What Brings me Down” blog post is more about all the things that are frustrating, overwhelming and make me want to cry in the world of diabetes advocacy.

However, there is one area that does bring me down recently. Several nights, not in a row, of CGM alarms disrupting my sleep are bring me down. Is it just a phase or is it a new trend? Being overwhelmed with the night time alarms not being consistent so I can’t use the information to make changes is bringing me down.

Oh and the thoughts of doing basal rate checks is bring me down too. I’ve no problem doing, no, I’ll correct that to, I have the least resistance in doing basal rate checks at night. Go figure that one!

My anxiety levels elevate a bit when I consider doing basal rate checks during the day because I’m always running around and I “chauffeur” during the day (school dropoffs and pickups). So, and please don’t be horrified by this, but in my 7 years on an insulin pump I have not done basal rate test in daylight. But since I learned more about Sugar Surfing last weekend I have a renewed ambition to tackle this.

What seriously brings me down is trying to explain what living with diabetes is like for me and not receiving compassion or understanding. Being met with the challenge of lack of knowledge and being met with a lack of empathy because the tabloid media and some health care professionals continue to reinforce the myth that diabetes is a self-indulgent condition and therefore deserved.

What brings me down is trying to fundraise for anything related to diabetes, especially to improve diabetes health care services in Ireland, in a world that doesn’t seem understand or want to understand why we need those things. What brings me down is how heavily we rely on our own community to fundraise when we are such a small one.

What brings me down is hearing that a new, much needed, health care professional has (finally) been appointing in a diabetes clinic only to find out that a vacancy or funding is pulled from another clinic in another part of the country. Case and point here;

“– In Waterford, the vacant Consultant post there was advertised last year and we have to wait over 6 months for interviews to be held and possibly up to a further year for the post to be filled.

– Following the transfer of a Consultant from Sligo Hospital to Limerick University Hospital, nothing is being done to date to recruit a replacement in Sligo.

– In Galway University Hospital, we are waiting for interviews to take place for the vacant Consultant post there which was recently re-advertised following the withdrawal of a successful candidate who was returning from abroad and who had accepted the post in 2015 and was due to start in 2017.” Source Diabetes Ireland

What brings me down is the fact that our health service published a standard of care document for children with type 1 diabetes in December 2015 and have absolutely no progress or indication that it will be implemented any time soon.

And finally, what brings me down is the fact that there is NO standard of care document for adults with type 1 diabetes and even if the health service ever gets around to publishing the delayed since June 2016 document for us, I feel like it will never, ever be implemented and I am on my own to advocate for myself.

It’s the never-ending-ness of the work needed in the diabetes advocacy world and the constant two steps forward, one step back and sometimes two steps back, that brings me down the most.

But I suppose it keeps me distracted from my own type 1 diabetes getting me down. :-S

Diabetes Blog Week – Day 3 The Blame Game

This week is Diabetes Blog Week which is in its 8th consecutive year. This is my second year participating. Diabetes Blog Week was started by and is still instigated by fellow type 1 Karen Graffeo in Connecticut who blogs at Bitter~Sweet Diabetes​. This week is as a way for multitudes of D-bloggers (well over 100 participants from ALL OVER the World each year!) to share a huge variety of perspectives on issues relating to our illness. Learn more about Diabetes Blog Week here.

#DBlogWeek

Diabetes Blog Week – Day 3 The Blame Game

Have you experienced blame and judgement from your healthcare team or someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us! (Thank you, Brian, for inspiring this topic.)

I tend not to judge the friend, acquaintance or complete stranger too harshly when the say something that doesn’t particularly sit well with me. I find when I use this moment as an educational and awareness one we both walk away happy… I hope.

However, I actually feel a lot of judgement from a select few people with type 1 diabetes on all that I do to manage my diabetes. I was reminded of this by these words:

“You know, someone at my work has diabetes and they don’t seem to have all the things you have to manage it. Maybe you should try to simplify what you are doing. You don’t need all of those things.” from Diabetogenic.

I immediately thought of a conversation I’ve had that was so similar but this conversation was with a person with type 1 diabetes.

It was during the time that we were organising the very first Thriveabetes Conference. We sent out press releases to every media outlet we could think of, and a researcher from a very well known radio programme called me to, you know, do research. I immediately launched into my Thriveabetes "Sales" Speech about the power of peer support in helping people with type 1 diabetes and why I believed the event was so important.

It was only when I talked about the mental burden that living with type 1 diabetes can sometimes bring that this person revealed that she was a person with type 1 diabetes. She went on to challenge what I had said by saying that she disagreed with my personal experience of living with type 1 diabetes. She did not feel that way at all. She said that just got on with it, diabetes didn’t get in the way of her life at all and she didn't think about her type 1 diabetes much at all. I did respond that I thought that was great for her but my experience and a lot of people I knew shared my views.

She made me feel like a failure! She implied that I was doing way too much to take care of myself and making a big fuss about an illness that she found easy to manage. I choose to believe her because I don't know this person. Who am I to challenge her about how well she manages her diabetes? But I felt I was not getting the same respect.

It was so hurtful! And I didn’t know how to respond! I think that I may have gotten her back up a little with whatever my flustered response was because we never got a call back to do an interview.

This wasn’t the last time that similar conversations have happened. But I now feel that I handle them better. I jump in straight away with compliments on the diabetes knowledge and commend them for finding their way. I express my mild jealousy on how easy they have it. If this person allows me to explain a little about how I feel, that should be all I need. I hope that this is enough to illicit a smidge of respect and understanding that not all people with diabetes are the same.

Thankfully, it’s only a few select people that I have had these types of interchanges with, and the Diabetes Community is overwhelmingly the best bunch of people to hang with whenever possible. As experience at the recent #SugarSurfingDublin workshop :-D