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

Diabetes Blog Week - The Cost of a Chronic Illness

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.

“Karen created this annual week-long blog carnival as a way for multitudes of D-bloggers (now more than 100 participating each year!) to create an unprecedented sharing of perspectives on issues relating to our illness. You can learn more about this effort, and sign up yourself if interested, here.” #DBlogWeek!

The Cost of a Chronic Illness

Insulin and other diabetes medications and supplies can be costly. In the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care? (This topic was inspired by suggestions from Rick and Jen.)

I’m one of the lucky ones. I was born in Ireland. I’ve lived there most of my life. But I’m not lucky because I live in the Gorgeous Green Kingdom. I’m lucky because 50 years ago a bunch of people who live with diabetes got together at a meeting and said that their mission was to provide free insulin for everyone living in Ireland who needed it. (Yes, we pay for it through our taxes but really, it’s free.) And two months later it happened.

Then in 1971 all other diabetes medication and supplies became free. This is why I am lucky.

I’ve been following the American coverage of the cost of insulin with a broken heart and feeling of helplessness. And I know that there are countries in the developing world where a vial of insulin is a number of days of walk away from the people that need it.

I did have difficulty accessing diabetes technology in the form of an insulin pump and a cgm and diabetes education is still difficult to access here but this seems so insignificant compared to not being able to afford or get your hands on insulin.

I read the book "Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle" over the Christmas holidays and it detailed those first few years where Insulin production was unstable and there wasn’t enough for everyone. Neither of the manufacturing companies couldn’t make it fast enough. Access to insulin was because there wasn’t any.

My diabetes doesn’t cost me anything but my time. This is sometimes a bit of a weight on my shoulders as my clinic appointments happen when I am supposed to be collecting my children from school. But it’s also a huge relief.

Volunteering helped me find my Vocation

May 15 to 21 is National Volunteering Week. The focus of this year's campaign is to showcase the benefits that volunteering can have on a person's health and wellbeing. Volunteers often say that while people think that volunteers are helping them, it's often them who help the volunteers.I’ve been volunteering for 10 years! And the most important thing I have learned from volunteering is that it’s more than just the reward for doing good; the benefits, for me have been tenfold.

Volunteering has enabled me to create a local diabetes support community when I desperately needed it, it has helped me become an empowered person with diabetes and fostered a diabetes advocate. This has lead to numerous volunteering opportunities which allowed me to grow and develop as a person. And ultimately find my calling! But I could not have done any of that without the help of training from my local volunteer centre in Clare (Dolores & Sharon) and Diabetes Ireland.

A LITTLE BACKGROUND I was diagnosed with Type 1 diabetes when I was 20 years old. It’s a lifelong chronic condition where the food I eat does not become nourishment for my body. If I did not take insulin through my insulin pump I would die of malnutrition.

Type 1 diabetes didn’t stop me from doing anything in my life but, until I met my husband, living with diabetes was very lonely and I felt very isolated.

Living with type 1 diabetes requires a great deal of concentration and mental energy. It’s not just about taking insulin and healthy eating. It requires calculating the amount of that medication based on what my blood sugar is at that point, how much carbohydrate (yes, I weigh carbs) I am about to eat and how physically active I’m likely to be in the next 4 to 6 hours and more. It’s a lot of work.

In 2007, I had moved back to Ireland after a four year stint living in the US. I was thirty, a stay at home parent with two very small children and didn’t know very many people in my new town in my old country.

I was receiving support from my medical team but it just wasn’t enough for me. I needed to hear that “me too” response from peers.

Fostered the Peer Support Facilitator So with the help of the Clare branch of Diabetes Ireland we needed to get started Clare Diabetes Support and they have been growing from strength to strength for almost 10 years. We became a community that helped each other live with the daily challenges of living with diabetes through sharing our own experiences.

Enhanced the Graphic Designer In 2010, I came across the Australian Type 1 Diabetes Network’s version of the “Type 1 Diabetes Starter Kit; A Guide for Newly Diagnosed Adults” and I knew it was something that could be adapted easily for people with type 1 diabetes in Ireland. I approached Anna Clarke in Diabetes Ireland about it but the time and resources that would be involved they just didn’t have. So, when she told me to “Go for it!” I thought why not! I’m very proud of it and very grateful for Diabetes Ireland’s support. What I learned during the process of adapting this booklet what most of what I needed to organise a national type 1 diabetes conference called Thriveabetes.

During the time I was working on the Starter Kit, Diabetes Ireland decided to shorten their name from the Diabetes Federation of Ireland and they needed a new logo. As a graphic designer, they approached me to take on this task. I still have to remind myself wherever I see it that I helped do that. It’s kind of awesome!

Both of these volunteering opportunities earned me the 2012 Diabetes Ireland Volunteer of the Year Award.

Fostered the Blogger and Advocate I created my first blog post in May 2010 as a way to pass on the information I learned about local health services and as a way to connect with more people with diabetes. I tell people that I blogged from inside of a closet for many years because I didn’t have the confidence to say “I write a blog”. Until my volunteering lead me to receive a scholarship to attend an Advocacy MasterLab in Florida in July 2015. Yes! FLORIDA!!! And this was A-Mazing. I learned so much from this experience and six months later I came out of that closet and told people I actually write two blogs! The blogs have lead to me engaging more with social media and that in turn lead me to be nominated by Diabetes Ireland for the International Diabetes Federation’s Social Media Award for which I was shortlisted. http://www.idf.org/idf-europe-prizes

The IDF selected me as their representative to attend the Medtronic Community Exchange Event in Barcelona in November 2016. www.bloodsugartrampoline.com www.thriveabetes.ie

Fostered the Thriveabetes Founder & Event Organiser Thriveabetes: The Thrive with Type 1 Diabetes conference is probably what I spend most of my volunteer time on these days. This event uses every skill I have learned though all of those years of volunteering from financing to volunteer management.

Volunteering Make Us Stronger And there you have it! What started out as a cry for help over time became a “what can I do to help you.” I now spent all of my free time writing, connecting with my diabetes community (online and offline) and advocating for all the things we need for people with diabetes.

I have found something I am passionate about. I can’t wait to see where volunteering brings me next!

Diabetes Ireland Celebrates 50 Years

Last Thursday evening, Diabetes Ireland launched a book detailing their 50 years in existence. I was so proud to be there to witness it, so honoured to be asked to contribute and excited to meet some diabetes legends. Local TD, Róisín Shortall did the honours and gave a lovely speech, as did chairperson, Hilary Hoey and CEO Kieran O’Leary.

Did you know that the very first AGM of what’s now Diabetes Ireland took place on the 2nd of April 1967 in the Mansion House in Dublin?

Do you know that 750 people showed up???? Yes, seven hundred and fifty people!!

They must have come from all over. The first mission of the organisation was to make insulin free to patients. They achieved this within their first two months. And then secured all other diabetes supplies on the Long Term Illness scheme in 1971.

This was especially poignant because as we were celebrating 50 years of free insulin and diabetes supplies, at the same time in the United States of America, THE richest nation in the world, the House of Representatives voted to repeal the health care act that made insulin accessible, and affordable to most of its millions of it’s citizens with diabetes. It was heartbreaking.

I’m quite lost for words for my fellow PWD’s in America. I hope to be able to find some, words that is, for a post soon.

When the speeches finished, I was approached by a lady, Una Wilson, who wanted to tell me that her daughter, Orla, who lives in America sent her a piece that I had written for DiabetesMine.com and complimented me on it.

I’ve always loved to hear stories, other people diabetes stories, and to hear about how Diabetes Ireland began and about the people who started it has been fascinating for me. So when Una told me her name, I immediately knew that she was employee number 2 with Diabetes Ireland - the very second person employed, and launched into a hundred questions about how that happened and what it was like. Una was diagnosed in 1982, her daughter Orla, then 12 was diagnosed a couple of months later and Orla’s daughter has been diagnosed recently.

The family of the very first person employed by Diabetes Ireland, Phil Vizzard, were there too and represented her proudly. Phil’s daughter, Nicola, talks in the book about being a small army of fundraisers; “shaking boxes outside football matches, raising sponsorship or collecting money in pubs”.

This book was exciting for me to read because I’ve been meeting other volunteers for years and never really got to sit and chat with them. It’s through the book that I found out how much of a LEGEND Donegal’s Danny McDaid is. Danny is a long time volunteer and a two time Olympian. I mean he has a 10K named after him!!!

I had no idea that there was a story behind the start of the southern branches. I also had the opportunity to meet Tony O’Sullivan a fellow person with type 1 diabetes and a GP, who was chairperson of Diabetes Ireland about the time that I began volunteering and went on the become chairperson of the International Diabetes Federation.

It was a lovely evening and I hope that this book finds it’s way into the hands of every person with diabetes.