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.

Being "Diabetic"

I am very privileged to know lots of people in the diabetes community. I also know a lot of people who aren’t particularly bothered about being called “Diabetic”. I respect their choice on that. However, I am not one of those people. I may have been once when I felt so uncomfortable talking about my diabetes that I felt it was easier and quicker to say “I’m diabetic” rather than say “I have diabetes”.

These days though, the harsh sound of the ‘ic” at the end of the word makes me cringe. It’s like hearing nails scrape across a chalkboard. But I feel the soft “es” at the end of the word diabetes lessens the punch in the guts for me.

The very famous and very talented Kerri Sparling uses the tagline of “Diabetes doesn’t define me but it helps explain me” on her blog Sixuntilme.

I am a wife, mother, daughter, sister, former graphic designer, former payroll clerk, I’m Irish… etc. These are all things that define who I am.

I’m not going to give that kind of power to my diabetes.

I have blue eyes, fair sometimes blonde hair, fair skin, lots of freckles and I have type 1 diabetes. These are things that describe me and they are not all that important. What difference does it make if I have blue or purple eyes. Not much.

So for those who know me, I’m not a diabetic. I have diabetes. And for those who don't know me I ask that when you are talking to people with diabetes or about people with diabetes, please be aware that some don't like it. Thanks and appreciate it:-)

Here's what the American Diabetes Association has to say on the use of this term;

There's a reason the American Diabetes Association, Diabetes Forecast, and most scientific journals avoid using the term "diabetic" as a noun: People with the disease are diverse individuals, not a single entity. Some people identify themselves as "diabetics" and find that the term provides a useful narrative framework in which they manage the realities of living with the condition. But not everyone feels that way.

Many people with diabetes see the term as stigmatizing. They advocate that the language used to describe the condition and the person living with the condition be carefully distinguished. Another reason "diabetic" should be scrapped? Defining a group of individuals with a similar disease by their condition may prevent others, including family members and health care providers, from thinking about their experiences and needs as individuals.

Ketone - Scary or Not Scary?

**** I am not a health care professional nor do I have anything that looks remotely like a medical degree. So take anything I say with a pinch of salt.

For this piece I have combined information I found on;  Diabetes Daily written By Ginger Vieira on January 4th, 2016, from Beyond Type 1 WRITTEN BY: Kyla Schmieg, BSN, RN and from The Type 1 Diabetes Network Australia Type 1 Diabetes Starter Kit

When I was diagnosed in 1993, I don’t remember hearing the word ketone back then. In fact, I don’t think I hear it until the early 2,000’s. Remember, diabetes education didn’t exist in Ireland before then - not to my recollection anyway.

In my 23 years with type 1 diabetes I have never tested for ketones. Firstly I don't often get sick. And secondly, when I’m sick I take all the recommended actions that deal with both being sick and flushing out ketones.

However, I hear a lot of talk about ketones and began to think that, maybe, I'm a bit too relaxed about them and need to know a bit more.

So, first, what is a ketone?

When our body can’t access glucose, it looks to burn fat for energy. Burning fat results in ketones.   

“Ketones build up can lead to Diabetic Ketoacidosis (DKA). Signs of DKA include nausea, vomiting, abdominal pain, fruity or acetone (think nail polish remover) breath, rapid breathing, flushed skin, and lack of energy.“ http://beyondtype1.org/ketones-the-6-must-knows/

Why are they so scary?

Ketones usually build up in a person with diabetes if they do not have enough insulin taken and can be fatal.

If ketones happen “too much too fast, it is not natural and it’s important to understand that ‘normally’ produced ketones are very different from ketones that develop due to insulin deficiency.

Moderate or large amounts of ketones in your body are very dangerous. They upset the chemical balance of the blood and lead to a condition called diabetic ketoacidosis or DKA. Some people also experience fast and heavy breathing and exaggerated beating of their heart. It is scary! If you experience DKA, you need to go to hospital to be rehydrated and monitored while the ketones in your body reduce to a safe level.

Many people with type 1 diabetes have never had an episode of ketoacidosis, but you may have already experienced DKA during diagnosis. Unfortunately, DKA is life threatening, so you need to understand what it is and what to look out for.” (from the Type 1 Diabetes Network’s Starter Kit page 37)

OK, I’ve got it so far.

This much is easy to follow but when I started hearing about the different type of ketones that were I got a bit lost. Especially when I heard that you can have ketone when you are not sick and have normal blood sugar levels. Until I did this research, I didn’t know if that was a “freak-out” or “not-to-freaky-out” situation.

Different types of ketones.

Illness-Induced Ketones

Illness-induced ketones can be very dangerous for a person with any type of diabetes. People with diabetes who are sick, especially with an infection, a stomach bug, or the flu should always test their ketones while they are sick.

A mild illness can cause low level ketones that are usually not life-threatening or severely serious. If ketones are at low levels, the general suggestion is to consume plenty of fluids and talk to your healthcare team about increasing your background insulin doses.

Even if your blood sugars appear in-range but you are producing ketones when sick, an increase in background insulin can help eliminate the ketones without dropping one’s blood sugar.

On the other hand, a person with diabetes, who is vomiting repeatedly will almost always need to get to the ER as quickly as possible. Vomiting, no matter the cause of the vomiting, will likely induce large ketones and can be life-threatening. Vomiting leads to severe dehydration which will escalate ketones further to a state of DKA.

Since severe ketosis will likely make a person extremely nauseas in addition to their illness-induced nausea, it can be nearly impossible to consume enough fluids at home to re-hydrate the body. An IV drip of saline at the hospital is essential to rehydrating the body, reducing or eliminating ketones, and stabilizing blood sugar levels.

Consult your healthcare team if you have concerns about your state of ketosis.

Starvation Ketones

Starvation ketones are simply the result of not eating enough food over the course of several hours. Both diabetics and non-diabetics can easily produce very low levels of ketones overnight, seeing a faint pink color on a urine ketone strip first thing in the morning. These are not dangerous unless, of course, this person continues to starve themselves.

Nutritional Ketones

Nutritional Ketosis is a state where the body is using ketones as a fuel source efficiently and safely. In individuals without diabetes or in those with controlled diabetes, having insulin on board to maintain healthy blood sugar levels keeps ketone production in the safe range.

This is achieved by reducing carbohydrate-intake to below 50 grams, because when glucose from food is limited, but blood sugars are still in a healthy range and enough insulin is present, the body will begin to burn body fat for fuel instead, producing low levels of ketones in the bloodstream.”

As long as blood sugars are maintained in the normal safe range with insulin, someone with diabetes can very safely be in Nutritional Ketosis.

When you’ve been in Nutritional Ketosis and not even known it:

• when you skip breakfast and don’t eat until lunch or later, your body is burning body fat for fuel and likely producing low-levels of ketones
• when babies are born, they are often in a state of nutritional ketosis for the first few days or week of life because they are consuming very little breast milk until the mother’s breast milk production ramps up
• when you eat a low-carb meal (eggs and bacon) for breakfast and don’t eat again until late lunch or afternoon…or…when you eat a low-carb breakfast followed by a low-carb lunch, your body is producing a low level of ketones until you eat a more significant serving of carbohydrates at dinner, etc.

Can you get ketones with a high blood sugar?

Ketones typically accompany high blood sugar. Ketones indicate your body needs more insulin. Most often if your body needs more insulin, it means your probably have a high blood sugar. Also, when an illness is present, your body releases hormones in response to the stress. These hormones lead to elevated blood glucose. That is why it’s recommended to test ketone levels during illness.

Can you get ketones with a normal or low blood sugar?

Ketones can also be present when your blood sugar is normal or low. These are sometimes referred to as “starvation ketones” or “nutritional ketosis.” During an illness or extreme diet change, if you have a significant decrease in carb intake, this can lead to the body using fat for energy because there are not enough carbs present to burn. Your blood sugar could remain normal or even be low in this case but your body could still be producing ketones.

From; http://beyondtype1.org/ketones-the-6-must-knows/

Conclusion

My conclusion is that, like diabetes, ketones need to be treated seriously. They are not always scary but you need to know why, when and how. And remember, if in doubt call your D-team. A quick phone call equals peace of mind.

Sources of information about ketones;

• https://www.diabetesdaily.com/blog/2014/11/dka-nutritional-ketosis-are-not-the-same/
• http://beyondtype1.org/ketones-the-6-must-knows/
• http://www.healthline.com/health/type-2-diabetes/facts-ketones#1

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

Exercise is Changing Diabetes

I can take or leave cycling.... Actually, if you take one look at me you can tell that I just about tick that box for exercise. ▖✓ However, this video came up several times in my twitter and facebook feed and on the 3rd time seeing it I thought maybe there is something in that that I should see and hear.

The answer is YES there was! It’s a 7 minute video filmed by the BBC and I feel, that it is a must see for all people with diabetes. Believe it or not there are still health care professionals in Ireland telling newly diagnosed people to give up exercise, especially competitive sports with their diabetes! 

These amazing people are changing the public’s perception of diabetes all over the world. It’s so powerful to hear about how much time and effort they put into their diabetes management and still make strides competitively. Team Novo Nordisk is the only all diabetes pro cycling team on the planet.

Phil Southerland, founding member of the professional cycling Team Type 1 speaks about how in a time where children with type 1 were not encouraged to exercise his mother saw something positive in his numbers when he did.

Our very own Stephen Clancy from Limerick is a member of this diabetes cycling team that is planning to compete in the 2021 Tour de France. His voice is featured in the introduction to the NovoNordisk promotional video. Stephen was aged 19, and on the path to a successfully career in pro-cycling , when he was diagnosed with type 1 diabetes. He was told to give it up!

Thankfully, sometimes it pays off to not listen to your medical team. Please share this video and encourage our children with diabetes to not give up on their dreams because of diabetes and to inspire others.

The Luck of the Irish

As we celebrated St. Patrick's Day last week, I began to reflect of what it’s like to be a person with diabetes living in Ireland.

The luck o’ the Irish is often referred to in movies, etc, but in actual fact, when it come to diabetes, I think we should called it lucky to be born in Ireland.

We have socialised medicine here, we called it public healthcare. It gives us free test strips, blood glucose meters, insulin and lots of other diabetes medicine without any stipulations.

Private healthcare is an option here too but it usually only covers hospital treatments, although the insurers are starting to cover primary care visits a little.  With private health insurance you could get a private scheduled appointment with an endocrinologist but you don't, in most cases, get the backup of a diabetes nurse specialist or a dietitian.

When I hear stories from my friends in America, especially when I read Riva Greenberg’s piece in the Huffington Post about battling with health insurance companies for diabetes supplies I'm truly thankful that the reason Diabetes Ireland was formed in 1967 was to ensure that diabetes was included on the Health Service’s list of long term illnesses and therefore providing us with free medication and supplies.

We also have excellent health care professionals working in our clinics, just not enough of them.

Sure, there are lots of other things that we don’t have but we are advocating strongly for, such as national access to structured diabetes education, access to psychology, unlimited access to insulin pumps and continuous glucose monitoring.

And dealing with the health care professionals outside of the diabetes setting is frustrating. And yes, I did have to haggle with my diabetes team to make sure I got my insulin pump 6 years ago and my CGM last November. And yes, sometimes I don’t feel listened to at my clinic. But these are problems that are global.

But we don’t have to beg, wrestle or finance our basic diabetes needs.