How I got a CGM

The end of May marked six months since I got CGM'd. WOW! It just flew by. 

After two years of persistence, I finally got my CGM on November 27th 2015. When I announced this on social media I has a number of queries about how I managed to get approved and how difficult others were finding their quest.

As always, the one thing that the diabetes community is brilliant at, is sharing knowledge through our personal experiences for the benefit of others. So, here is the story of how I came to have a CGM.

How did this quest begin? Well, it began with an insulin pump (and that was another long drawn out "quest") in June 2010. I wrote about that journey here on 29th March 2011.

I use the Animas Insulin Pump and as soon as Animas announced that they were rolling out the Animas Vibe with CGM integration in the UK and Ireland, I was on it like sticky on a toddler.

My pump was due for an upgrade in 2014 as the warranty runs out at 4 years and because the pump software would not continue past January 2016. I called my Animas rep to find out how, or if there was a chance that I would get a Vibe as part of this upgrade and she said yes! Great! But wait!

Hiccup no. 1. However, between hearing this information and my next appointment at my endo's office, my Animas rep, the only Animas employee in Ireland at that time,  took a 12 month sabbatical. That combined with having only 3 visits per year to my endo doesn’t give me much of a chance to get things done. I did get my Vibe in June 2014 and immediately started chasing down how to get the CGM component.

Hiccup no. 2. My Animas rep returned from her sabbatical the following August BUT then my fabulous endocrinologist left her position at the hospital I attend! I decided to use this opportunity to migrate back into public health care for my diabetes. My children were both in primary school and it was doable to fit clinic visits during school hours. I had also heard of a clinic that was only a one hour drive away that had an insulin pump clinic and DAFNE. 

Hiccup no. 3. Fifteen month waiting list!!!!!!!!!!!!!!!! Not kidding! By the time I got my referral sorted out to my new clinic and waited I had been without medical care for 11 months. I was doing fine but I was starting to get a wee bit unsettled. Thankfully, when I called to chase up my referral they squeezed me into the Type 2 diabetes clinic in April 2015 but at least I was in and on the books.

June 2015 - I set up a trial before purchase with a Dexcom CGM for two weeks and I was hooked. And now I had data, with the help of my mathematical husband, to strengthen my case for getting one permanently.

October 2015 - I presented my case and there were a couple of breakdowns in communication but the paperwork was put through to apply for funding approval from the HSE and on the 27th November I was live on a CGM permanently.

It took 17 months to complete this quest, that in the end when I had convinced my diabetes team why I wanted one took 6 weeks. Unlike an insulin pump, the training and education required before a patient goes live on a CGM is minimum. 

In February 2016, an additional piece of this quest was completed and that was the reimbursement of the monthly supply of sensors which comes not from the Core List F of diabetes supplies and medications included in the Long Term Illness Scheme but on the Special Product List. See here for more information.

And that is the complicated story of how I got a CGM. My next post will focus on what I have learn about managing my diabetes by using it and how I will be taking it to the grave with me.

If you want to find out more about what is a CGM (Continuous Glucose Monitoring) device is, watch here. There are two available in Ireland at the moment; the aforementioned Dexcom (with or without the Vibe insulin pump) and the Medtronic RealTime Guardian CGM. The newer Medtronic pumps all come with CGM compatibility but you can get the CGM component without getting an insulin pump.

Future Health Summit Review

I have so much to share from the Future Health Summit last Friday I really don’t know where to start. So. Much. To. Write. It was very much an honour to have the opportunity to attend and to get a glimpse into the health care professionals' world and to have access to a diverse range of AM-azing speakers from all areas of health. Friday morning, I arrived in, what I thought, was plenty of time to browse the exhibits but due to a minor mix up in the timetable I lost forty five minutes of that time. I met some really interesting people though, who do some very important work and some very interesting delegates.

The first part of my day was spent attending the Diabetes Ireland workshop, which was consolidated with the ARCH workshop.

I have to say that I feel a new & engaging phase of diabetes patient conferences evolving. The diabetes conferences that I had been going to in Ireland were stale for me. They were very much medically driven and about getting to know the basics. They were not at all engaging, or very seldom and I wasn’t learning anything new at them so I stopped going.

In 2014, I had my first experience of what a patient conference could be when I went to my first diabetes conference where the speakers really, I mean really, engaged with their audience. It was almost like we were at a Baptist church service and I just wanted to stand up and sing “Halleluia”! I called these guys and gals Diabetes Rock Stars. And these guys blog, have websites, run organisations and are well known in the diabetes world. You know who I’m talking about because we are bringing a small number of them to Thriveabetes.

But in recent months, as I do more and more blogging and advocating and learning and meeting new diabetes people I’m beginning to realise that we are growing our own crop of Diabetes Rock Stars right here in Ireland. I can see it happening and it’s so exciting. The two I will mention today are Diabetes Ireland's very own, Anna Clarke and Kate Gajewska (no she's not Irish born but we are keeping her:-)

Kate's "Top 10 Tips for living with Diabetes"

Kate presented her "Top 10 Tips for living with Diabetes". But they weren’t what you might have assumed they were. She told us not to forget to live and play, that diabetes is part of our lives - don't let it become our whole lives. Become an expert in diabetes - find out what it is, how insulin works, how carbohydrate is absorbed - there is nothing as empowering as knowledge. They are just a couple of the gems she shared. And she told us her diabetes story of growing up in Poland and how her parents bought her first blood glucose meter when they first came out and then they bought her first pump. How expensive they were but that her parents know how much a difference they would make in her life. I hope to have more information about Kate in the coming months on the Thriveabetes blog.

Anna's " What to expect from you annual diabetes clinic appointment"

Anna Clarke gave us her version of what to expect from you annual diabetes clinic appointment. It was clear that Anna knew most of the people with diabetes in the room had type 1 and I think she also knew some of us personally. She delivered a talk that was specific to us. Us, who have been around the diabetes block for a while and do our homework for our appointments. So, she told us that we should not be afraid to speak up at our appointments, especially if we don’t feel listened to. That, even if our doctors and nurses don’t see us as equals, we should still see them as ours. And to focus on getting more time with our Diabetes Nurse Specialists rather than our Endocrinologists.

Shane O'Donnell & The ARCH Workshop

Next up was the ARCH workshop which was extremely interesting and gave me a little introductions to sociology presented by Dr. Shane O'Donnell was presenting it with his colleague, Dr Maria Quinlan.

ARCH is the Applied Research for Connected Health, and "is at the centre of an unparalleled connected health education and research infrastructure that spans a range of activities from gathering, analysing and interpreting data, through the development of new knowledge and care models to implementing and evaluating change."

Shane, you might remember from a previous post, is Ireland's representative on the International Diabetes Federation’s Young Leader in Diabetes Programme. And even though he had written a piece for Thriveabetes, which you can have a read of here - we had yet to meet. Cool Bananas! Box ticked!

I know that I’ve come across a couple more Irish people in diabetes who qualify as "Rock Stars" - but I thought I would just give you a little flava.

We had a quick break for lunch. And then my afternoon was spent attending the Diabetes Summit, where I was presenting. I have to tell ye, I think I have the bug. TBC This post is long enough:-)

Apologies for the lack of photo, I really need to upgrade my phone:-(

The Blood Sugar Train Wreck

This train wreck started with a decision to skip the spud at dinner, in my opinion. We were having Chicken Maryland and so there was enough carb on the breading to double my usual dinner carb count and I decided to forego the mash potato. This middle/2nd dip below the blue line in my photo opposite shows the low blood sugar after dinner.

I, mostly, eat low to moderate carbs to help maintain good blood glucose management. It’s a decision that I made for myself and I would never try to make it for anyone else.

Having said that, the real, real reason I skipped the spud was to have an ice cream. :-S It was a Saturday and I like to have a special treat on the weekends. Being a stay at home mum, it kind of lets me know there is something different between weekdays and the weekends.

I feel like I’m digging a bigger hole for myself here!

Anyway, here comes the second questionable decision. My blood sugars plummeted after dinner and I was so SICK TO DEATH of eating glucose tablets that I opted for chocolate and jellies instead. I know! I know! Not the smartest idea. (Another big hole) I can’t even use the fact that my hypo was affecting rational decision making because it didn’t.

Lots of jellies!

Ok, now the predictable happen. ↑↑ Yep, blood sugars doing the opposite of plummeting, which eventually lead to rage bolusing because insulin does NOT work as fast as I would like it too.

Next up, the rocket train down again. At this point, I took 5 glucose tablets, I usually only take 2-3, to make sure it was well and truly taken care of and that I would not wake up again before I was suppose to.

There is no lesson in this post. I'm just frustrated!!!

But I survived! I learned! And I shall not beat myself up over it:-)

My Day in Food

This week I’m  taking part in the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. Founded by Karen at Bitter Sweet Diabetes. My Day in Food - Wildcard

WARNING - this post will be boring!!!

I feel like I’m the only person with diabetes in the world who doesn’t cook. I hate cooking!!! It goes back to my childhood where as the eldest girl it was expected that I would cook and I do NOT like being told what to do. 

It was also enabled by my husband, who when we met was vegetarian - I was reared on meat, potato & veg. I also am not a big fan of the spud either - am I really Irish!?! Anyways, he insisted on cooking and I didn't put up much of a fight. 

So here’s what someone with diabetes, who does NOT cook, who would be me, eats on an average day. And it will be, as expected, very boring!

Breakfast: Most mornings I go for the low calorie porridge. On weekends I go crazy and have 2 slices of wholemeal toast (dripping in butter😋😋😋) with two cups of tea. Can't function without a cup of good old Irish tea.

Mid Morning Snack; At least 2 cups of Coffee ☕☕ 

Lunch; Weekdays; Salad, protein, rye crackers for crunch! 😋😋😋😋 And a piece of fruit - whatever’s in season. On weekends; 2 egg omelette with whatever is in the fridge plus cheese, a slice of bread & a piece of fruit.

Mid Afternoon Snack: Tea this time. ☕☕ at least

Dinner: Could be anything! I am married to a wonderful man who DOES cook and is very, very good at it. In exchange I do LOTS of dishes - it’s actually in our pre-nup. This dinner is wholewheat spaghetti with a cooked from scratch tomato and a smoked sausage called cabanossi. And it was DE-licious!

Dessert: Every evening I have a little something nice like Chocolate or ice cream. Plus a last round of Tea. I know, I know but there are worse things out there and I don't have problems sleeping - so why not!

And that’s it! Like I said, it's not very interesting but it has minimum impact on my blood glucose levels and it's what I like and what works for me. Find what works for you:-)

The Clinic Appointment Fantasy

I’m  taking part in the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. Founded by Karen at Bitter Sweet Diabetes. Today's topic is The Healthcare Experience Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with health care. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I think I’m one of those few people who has changed my diabetes healthcare team more than the average person with diabetes. My current count is 7 clinics/endos. Is that a lot? It feels like a lot!

I could tell you all the things that have been said to me that made me walk from all those clinics/endos but that’s just too depressing. Instead I am going to focus on what my ideal clinic appointment would be like.

Over the years, I have collected a few requirements that I liked from each clinic/consultant to compile my “wish list” of how I would like my appointments to go. It goes something like this;

1. Parking - you would think that when they built these giant hospitals, or even now that they are redeveloping them that they would build the multi storey car park first?!? I spent 40 minutes one day driving around until I got a space in a housing estate about ¼ mile away. IT'S A NIGHTMARE!!!
2. The Waiting Room - I recognise that not waiting at all is a bit too much to ask, so wouldn’t it be nice if the waiting room was more sociable? I mean it’s a mini-support group right there. And what if there was tea and coffee available? I drive 1 hour to my clinic - I’d kill for a cuppa! There isn’t even a vending machine at most clinics I”ve gone too. 
3. The person who does the health checks should identify him/herself as what she is, as well as her name. Sometimes it's a nurse, sometimes its a healthcare assistant - I would like to know.
4. The doctor-in-training I see next, I would like them to listen more, I know I will probably never see you again but find out more about me and learn from me. Start a personal file on me in addition to my medical file.
5. My endocrinologist - we will be seeing each other twice a year for a lot of years, so get to know me. My favourite consultant, who actually left me and not the other way around, always greeted me with a very firm handshake and a very hearty “How are you doing?” She actually meant it! And asked after my family. It was like being met with a hug.

Clinic visits are just so clinical. I spend so much time going through my team’s recommendations one by one, explaining why I don’t think they are going to work. I need to feel listened to. I would love to leave that building having met one or two new people in the waiting room, maybe even a friend, with a feeling of “I can do this” as I leave and have received a pat on the back NO MATTER WHAT!

NOTE: I also should point out that I am one of a minority who already has an insulin pump and a CGM. If I didn't have either of those devices my list would MOST definitely include access to them. Some Irish diabetes clinics don't even have insulin pump programmes or structured diabetes education and I am helping Diabetes Ireland advocate for these basic necessities.

The Importance of Diabetes Language - My Own

This week I’m  taking part in the 7th annual Diabetes Blog Week, which runs from 16th to 20th May. Founded by Karen at Bitter Sweet Diabetes. Language is so important in all aspects of life, isn’t it. Sticks and stones, and all that, really is a load of BS (and I don’t mean blood sugars). We advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes.

But last year, I realised that I have not been including myself in that advise - I, quite arrogantly, thought I was exempt. I mean, how could I, a fellow person with diabetes, offend other people with diabetes! Turns out, 23 years of living with diabetes only makes me an expert in MY diabetes.

I ventured out of my type 1 diabetes bubble last summer and met so many people who were just like me, except different - they had other types of diabetes. I listened to how they felt about their diabetes and about how people with type 1 diabetes inadvertently made them feel. I’ve always been concerned about how I was overshadowed and neglected as a adult with type 1 diabetes but realising how people with type 2 diabetes felt when all they get in mainstream media is judgement and stigma while people with type 1 diabetes gets sympathy and empathy.

How many times have I stated that type 1 diabetes isn’t caused by lifestyle? More than I can count. Since last year I have been very aware that I’m not doing anyone, least of all anyone with diabetes, any favours by using this language.

Language matters and I’m starting with my own. Since last year, I choose words that will not confirm any opinion that any diabetes is caused by being overweight or any factor of lifestyle. I explain my type 1 diabetes as what it is and not what it isn’t. I won’t say that my diabetes isn’t caused by lifestyle. I say it has no known cause.

I explain that type 2 diabetes has no known cause either. It has risk factors and I list ALL of them starting with the lesser known ones.

23 years of living with diabetes may seem like a long time but I still have a lot to learn.