The Value of my CGM - Priceless

Last week, on a regular old Wednesday morning, I went about getting my teen and preteen ready for school. It was the usual morning routine. 

Just before I sat to breakfast my Continuous Glucose Monitor CGM alarm beeped - “your blood glucose level is below 4.1 mmols.” I had absolutely no symptoms, so I replied “Sometimesyou such a fibber!" Yes, I have conversations out loud with my CGM. I know I'm not alone! Lots of conversations. I pushed a button to see what my CGM thought my glucose was and it said 3.9 mmols.

I double checked on my meter and sure enough it was 3.6 mmols and just as that number was revealed on my meter my cgm did the big beeeeeeep let me know that I was now 3.1. 

I had breakfast and waited. I had twenty minutes before I needed to get in the car. However, about ten minutes later I checked my CGM again to see where I was at and my glucose levels were no longer dropping but they were not rising… yet. 

So I made the decision to ask hubby to drive the children to school. Never drive under 5 mmols. 

Had this event happened at any other time of day, I may have gotten into my car and drove. How scary is that!

This is the value of my CGM. 

Control the Controlables at Thriveabetes

Thriveabetes is a diabetes conference for people with type 1, organised by people with type 1. 

(Disclaimer; I’m heavily, like up to my neck, involved with it’s organisation.) 

However, as an adult with type 1 diabetes I only attended the presentations that were specific to me. I have more reviews to come but these two presentations really had an impact on me. 

Control the Controlables

The first was “Control the Controlables” by Mark Davies, a Psychologist from Belfast and co-presented by former Team NovoNordisk pro-cyclist, Thomas Raeymaekers. He opened his presentation by asking us:
- How much do you feel responsible for your diabetes?
- Lots of people said 100%

He then asked us: 
- How much control do you feel you have over your blood glucose? 
- Most people said between 60-70%

Why?
What, in addition to carbohydrates and insulin, affects blood glucose?
Yeah, right! The list is endless!

So why do we feel 100% responsible for something that is only possible to “control” between 60-70% of the time?

There are a variety of answers to this question but an element of this is also that we make ourselves feel responsible. Sometimes we believe that it’s my diabetes and no one else should carry my burden.

That feeling of trying to be 100% responsible for something, we can only be in control of between 60-70% can lead to diabetes burnout. 

I first saw Mark Davies talk at the international Diabetes Self Management Support Alliance conference in November 2017. I knew straight away it was a talk we had to have at Thriveabetes.

His original title was "Learning from Sports Psychology" but I thought it was about exercise, duh! How wrong I was!

So what does sports psychology have to do with diabetes?

Mark introduced us to aspects of sports psychology that may be useful to apply to preventing or acknowledging diabetes burnout. And this is where Thomas our type 1 former pro cyclist helped out.

Thomas told us of his coach in his early cycling career who focused on winning. Mark asked Thomas how many cyclists he knew who had won a race? The answer was none. We’ve all seen the Tour de France where there is just one winner. There are usually 22 teams with 9 riders each which makes 198 competitors. That’s 197 losers. 

Thomas said by focusing on winning all of the time, he felt awful and he would be so hard on himself after every race.

Does this sound familiar?

Some sports coaches preach what’s known as the “psychology of winning”. The problem with the psychology of winning is that most athletes loose!

If you never “win” then how do you motivate yourself to even try?

The alternative sports psychology is to focus on “performance based” psychology which is the process rather than the end goal. As an athlete, you would focus on training, eating well, etc.

This ethos comes from American football coach, Bill Walsh, who using this process took a team who always lost to winning its first championship in just two years. 

“The San Francisco 49ers won its first championship just two years after winning only two games. Under Walsh the team rose from the cellar to the top of the NFL in just two seasons.

• Aim for a Standard of Performance (which is absolute) vs winning (which is relative to others). 
• Process͟ of improvement leads to ͞result͟ of victory and not vice-versa. 
• Focus on processes that produces results and not on results. 
• Promotions/wins/sales quotas (and HbA1c) are results, they do not provide information about performance. It’s important to dig into performance to find truth hidden behind these results.

In type 1 diabetes the only elements we have real control over are:

• Monitoring BG
• Taking insulin
• What we eat and estimating carbs

And if we focus on these three things then our goals of reducing our HbA1c and having our glucose levels spend more time in range should improve. 

The lesson I walked away with from this presentation was focus on doing my daily tasks in diabetes, don’t focus on number on a meter or a HbA1c, use them as information to improve with, and above all don’t beat myself up over the things I can’t control.

Diabetes Burnout

This complemented Joe Solowiejczyk’s talk nicely especially when someone asked “I’ve done all I was supposed to do to manage my diabetes but why am I still experiencing diabetic complications?”

This brings up two issues:
There is a difference between reducing you risk of getting complications vs having no risk and
If I’ve done all I was supposed to do and still get complications how do I cope with that diagnosis?

I’m going to end with a quote I read recently from Gary Scheiner’s book, Until there is a cure”. that “Many of the decisions we make on a daily basis are simply to make the odds in our favor"(page 117)

Joe Solo talking us through some Diabetes Burnout

Book Review - Until There is A Cure

I read Gary Scheiner’s book “Until There is a Cure: The Latest and Greatest in Diabetes Self Care” just before Christmas and the night I read the very last page, I started again at the first page again. I’ve never done that before. Ever!

This book is more of a follow up to his other book "Think like a Pancreas", which is a “everything you need to know about diabetes” book. "Until There is a Cure" is more of a  “what things we can focus on” every day.

It had a number of nuggets of information that I wanted to read the book again and commit them to memory. 
 

The Nuggets of Information, for me personally, were:

Post Meal Glucose Spikes

“The inclusion of Postprandial (post meal) glucose targets” and “As research continues to point out the link between post meal glucose spikes and the development of long term and short term complications, stronger emphasis is being placed on glucose stability.” I had not realized that post meal spikes were linked to complications! This made me pay more attention on tweaking my post meal spikes, which were dreadful, even if I pre-bolused. 

Vitamin D Deficiency

“Given that many people with diabetes have a vitamin D deficiency…” What! The book told me that my vitamin D deficiency was actually something common in diabetes, not just indicating another problem that I needed to be solved. I was borderline D deficient at the time so that was useful information. 

The Super Bolus

And gave me more information on a “super Bolus” which has been around for a long time but I just heard about the concept recently and didn't quite fully understand what was meant by it. But I was too distracted at the time by all the other information that was coming at me to focus on asking more. 

Playing the Odds

And then the concept that perfect is an unattainable goal. That “Many of the decisions we make on a daily basis are simply to make the odds in our favor (page 117). This so ties in with a talk I heard at Thriveabetes called "Controlling the Controllables" and how we can't control if we get diabetes complications but we can certainly stack the odds in our favour. 

This book taught me a lot! And most importantly it mentions peer support. See below: "Research presented at the American Diabetes Association's Scientific Sessions in 2012 showed that increase social networking was associated with SIGNIFICANTLY lower HbA1c levels..." 

It's a very quick read and I found it well worth the time.

Diabetes Support Organisation - DiabetesSisters.org

I wanted to write this post six months ago but finding time to write seems to be a luxury I can’t find these days. However, the timing is perfect now because of the support I have felt from the diabetes community in the last couple of months.  I’ve never felt more supported by my peers with diabetes, felt more a part of a like minded community and part of something really big.

Being part of Diabetes Sisters is like this too. DiabetesSisters.org is a nonprofit organization specifically for women with diabetes. They are a support and education machine and do so by encouraging, empowering and training women to form PODS (Part of Diabetes Sisters) in their local area. I seriously wish we could bottle and ship here to Ireland. Oh wait, we could. Keep reading! With only 3-4 paid staff based all over the US, Diabetes Sisters use technology to make sure their PODS leaders are fully supported. This means we could have PODS in Ireland:-D

Myself and Anna Norton, DiabetesSisters CEO on a flying meetup in Dublin April 2016

I met Anna Norton, Diabetes Sisters CEO in 2015 in Florida at Friends for Life, where she facilitated one of the workshops I attended. I’ve since discovered that we were diagnosed the same year, our sons are close in age and she too, has a husband who says “you should do it!” 

When I won a scholarship to attend the DiabetesSisters Weekend for Women conference Alexandria, Virginia Last October, I was so excited to have a chance to meet up with Anna again and make some new friends. (See the very end for my disclaimer.)

Even though, the weekend was packed with educational presentations and peer support sessions, there was lots of down time and socializing. This conference nurtured diabetes advocacy by the buckets!

PODS (Part Of DiabetesSisters) Meetups: A DiabetesSisters signature program

PODS Meetups are an opportunity to share experience, information, and support with others who have been there too.

Meet in person or online with other women living with diabetes for peer support, education, and encouragement.

Women age 18+ living with any type of diabetes or prediabetes are welcome, regardless of whether they were diagnosed yesterday or 40+ years ago.

We strive to create an open, respectful environment for women with diabetes and prediabetes to truly focus on their health.

Find out more about becoming part of DiabetesSisters HERE. 

History

Brandy Barnes founded DiabetesSisters in 2008 and served as the organization’s CEO until 2015. She was Diagnosed with type 1 diabetes at the age of 15 (1990), she quickly dove into learning all she could about the disease. The more she learned, the more she wanted to help others with the disease.
 
It was during her pregnancy with her daughter that she began to feel isolated and overwhelmed. She could not find specific resources for women with diabetes going through pregnancy. Thus began her vision for DiabetesSisters, a place where women with diabetes could get answers and support. 

DiabetesSisters recognizes that emotional and peer support is vitally important to a woman's overall wellbeing. Through DiabetesSisters' education and support services, women form a special bond and can freely share information, helpful tips, and stories of hope.

Disclaimer: Diabetes Sisters paid for my conference registration and accommodation but also gave me a contribution towards my travel costs. All they asked for in return was that I would write a blog post about the conference which I had to do anyway because I learned so much that needs to be shared;-)

Libre4All Update

Some of you may be aware that I have been collaborating with two other members of the diabetes community on the Libre4All campaign: Davina Lyon from Kildare/Offaly, Liz Murphy from Waterford. We are also collaborating with Diabetes Ireland.

The Press Release below was issued by Diabetes Ireland on Monday afternoon, 12th March, it's a combination of the press release myself, Davina and Liz issued on Monday morning and new information received by Liz.

We are asking the Minister for Health, Simon Harris, or a representative from the Minister’s office, to meet with us and other representatives from the diabetes community on Wednesday 18th April to discuss our concerns relating to the reimbursement scheme. The Minister has nominated two senior officials from the Minister's Office to accept the petition. 

If you are someone who is affected by the restricted access to the Libre reimbursement:

We would encourage you to contact your local TD’s to ask the Minister why the Freestyle Libre Reimbursement scheme is only available to children aged between 4 and 21 years?

If you are a parent of a child with diabetes who is included in the reimbursement scheme:

We ask for your support also. I feel that the message the HSE is sending out to our children with type 1 diabetes is that when you become an adult with type 1 diabetes you will be treated this unfairly and harshly. Please ask your TD's to ask the Minister why this scheme is not available to all people with diabetes?

We are also seeking media volunteers who use the Freestyle Libre from all over the country. If you would like to share how this device has made a difference in your life please email me at Grainne@thriveabetes.ie We would really appreciate it

HSE Denies Thousands Access to Life Changing Diabetes Device

Petition for “Equality for all people Diabetes” gathers over 16,000 signatures
 

The Type 1 Diabetes community has reacted angrily to the announcement last January by the Department of Health welcoming the HSE’s decision to reimburse Freestyle Libre. The reimbursement scheme comes with restrictions that leave thousands of people with type 1 diabetes denied access to this life changing diabetes device.  

More than 16,000 people have signed an online petition campaigning for reimbursement for all people with type 1 diabetes called “Equality for all People with Diabetes” created by diabetes advocate, Davina Lyon.

There are approximately 20,000 people with type 1 diabetes in Ireland. According to the 2012 Irish Paediatric Diabetes Audit, there are 2,750 children under 16 years with Type 1 diabetes. With the current restrictions on the reimbursement scheme only a small percentage of those children will be included and 17,000 adults with type 1 diabetes completely excluded because of their age.

The HSE used the Health Technology Assessment Group (HTAG) Advice Note to estimate that the “average additional cost per patient per year for using Freestyle Libre is a minimum of €62.60” making the cost of providing the Libre to all people with type 1 diabetes approx. €1.2 million, with an estimated additional saving in the “expected reduction in the need to perform finger prick testing of over 2000 times per year”.

This is an insult to the diabetes community as the HSE has already saved €5 million on blood glucose strips since April 1st, 2016, when the rules governing access to blood glucose strips for people with Type 2 diabetes were changed.

Representatives from the Diabetes community: Davina Lyon from Kildare/Offaly, Liz Murphy from Waterford and Gráinne Flynn from Clare, have requested a meeting with Minister Simon Harris on Wednesday April 18th to discuss their concerns and to present the online petition.
 

Diabetes Ireland said it is extremely disappointed that the ground-breaking Freestyle Libre technology is not being made available for every person with Type 1 diabetes, based on their clinical need. We are very much aware of the many disappointed adults, who currently pay up to €120 a month for this device and have seen much improvement in their health and quality of life from using the device daily over the past 12 months.

A lot of these adults were encouraged to get the device by their diabetes team based on their clinical need and on the basis that it would eventually be reimbursed by the HSE, as it is in the UK and many other countries.

Diabetes Ireland is very supportive of the Type 1 Diabetes Community Advocacy Group position and firmly believe that everyone with Type 1 diabetes should have access to the technology that bests support them to clinically manage their condition most effectively on a daily basis. However, it seems in this instance the HSE decision was based more on a cost basis rather than from the perspective of the patient’s quality of life and clinical need.

Further information from the HSE issued today in a response to a recent Parliamentary Question by Mary Butler TD set out the following patient eligibility criteria for a Freestyle Libre.  However, the is causing more confusion as the HSE has not made it clear whether a person needs to meet just one of the criteria, or all of the criteria to qualify for a Freestyle Libre. If it is the case that all of the criteria needs to be met, then only a very small group of people will be eligible and this is not acceptable. The HSE will be asked to further clarify and explain its position on this issue.

Eligibility Criteria for Freestyle Libre
1. Type 1 Diabetes
2. Children and young adults aged 4 - 21 years
3. Patient using multiple daily injections of insulin or insulin pump therapy
4. Patients who have increased blood glucose testing requirements (≥8 times daily)
5. Frequent episodes of diabetic ketoacidosis (DKA) or hypoglycaemia which have included hospital admissions
6. Patient is not pregnant