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.

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 Sneaky Low

I hate when the hypo just comes out of nowhere and hits you hard! It a very rare occasion that I have a hypo around lunch time. But yesterday, totally unexpected and without hardly any warning a 2.6 mmol/l (46.8 mg/dl) knocked me for 6.

I had been working upstairs doing light household chores. I decided to take a break and make some lunch because my CGM alarmed telling me that my blood sugars were 4.3 mmol/l (77.4 mg/dl) and I felt a bit on the shaky side but not much.

I threw a lunch together and sat down to check, dose & eat. WHAT!!! 2.6!!!!!! Then I realised not only was I actually shaking but I was sweating profusely. I decided to hold off on my lunch, which was low carb and protein - not a good start to treating a hypo, and I quickly chewed 3 glucose tablets.

I stepped away from my lunch to allow the glucose to kick in without obstruction from protein. I can’t believe I was that rational!!! Then again, I couldn’t figure out what I should do with my insulin dose - I should obviously reduce it a little. But should I include the glucose tablets in my carb count.

Fifteen minutes later I was still shaky but I think my brain was pulling itself together again. I checked my blood sugars again and I was 3.9 mmol/l (70.2 mg/dl), the food was sitting there waiting for me. I decided to put it out of its misery.

I took my reduced insulin dose at this point. It seemed like the right thing to do to avoid the low blood sugar rebound. I knew that the sweating had stopped because I got the chills but the shakes were still there and didn’t quite go away for about 30 minutes.

I did have to top the carbs up twice over the next two hours to keep my blood sugars in the safe zone which was another unusual circumstance for me.

The lesson learned today is to not to try to sneak household chores in before lunch! And always use diabetes lessons to avoid household chores :-D

A Day of Diabetes - A Not-So-Good Day!

As promised, the Not-So-Good Day of Diabetes.  When I was trying to decide which "Not-So-Good Day" experience to post about, I had too many to choose from. On this occasion I choose this one because it's not all to do with diabetes. It's the other stuff that affects diabetes or vice versa.

When I wrote this post I hadn’t had an uninterrupted night's sleep in about 4 nights. It’s my diabetes but it’s not just that. It’s the decisions I make too. Like to have 2 squares of chocolate with insulin just before bed. It’s my son having very loud dreams and it’s words in my head that need to go in a blog post that I’m compelled to record in the middle of the night.

The other night, for example, I attended our local diabetes support group meetup. I’m always wound up when I come home from those because I get to hang out with some members of my tribe. So, I have a cup of herbal tea and chat it out with hubby. I got to bed a bit later than usual. And then, I realised that I had to do an insulin pump set change. Ahhh!

About an hour later, I could hear noises, always freaky but at least I wasn’t the only adult in the house and it didn’t lead to a panic attack. After a couple of minutes of intent listening, I figured out that it was my son in the next room who talks in his dreams… very loudly. I listened for a couple more minutes to make sure he wasn’t in a terrifying battle with a velociraptor or something. He wasn’t and I tried to get back to sleep.

Another short time later, I woke up with words in my head that related to a blog post I had been working on earlier that day (not this one) and I had to come downstairs to my laptop to get them out of my head so that I could fall asleep.

So far a series of un-diabetes calamities. That is until 3am. My Continuous Glucose Monitor alarm went off to let me know I was below the low limit. Up, test, take glucose. Thankfully it was just 4.8 mmols/l (86 mg/dl) so not a hypo but a warning of a hypo.

Next up 4am, low blood sugar alarm goes off again. This time I just took glucose tabs without testing and went back to sleep.

While technically, this is a not so good night but I don’t hold out much hope for the rest of the day.

Later in the afternoon it was hypo time again. My blood sugars just would rise above 3 & 4 mmols. The result is a very queasy tummy at almost dinner time.

Being tired does not help diabetes at all.