Diabetes Friends for Life & MasterLab

In July, I was in a hotel resort. In Diabetes World, surrounded by thousands of people with diabetes, and at the Friends for Life 2015 Diabetes Conference. I felt like I was in a dream!

Those of you who have been following my blog for more than a year will know that I attended FFL UK last August and wrote about it for weeks. If you haven't seen those posts, here is the first one. Well, FFL US has given me enough material to write for months maybe even a year!

What is Friends for Life (FFL)?

The FFL conferences are organised by ChildrenwithDiabetes, an American non-profit organization dedicated to providing education and support to families living with type 1 diabetes. 

www.childrenwithdiabetes.com (CWD) was started by Jeff Hitchcock in 1995 in response to his daughter Marissa's diabetes diagnosis at the age of two. The idea was -- and continues to be -- to share experiences with other families, so that together, we can all make a difference in the lives of everyone living with type 1 diabetes.

In August 1999, a diabetes Mom on the CWD email list, Laura Billetdeaux, was planning her family holiday in Orlando in June 2000. She sent out an email to her friends on CWD asking if anyone was interested in meeting up there? 550 people from across the US showed up!

That was the first FFL! And FFL 2015 was their 66th conference to date.

Some FFL 2015 Facts.

- There were over 2,000 families, attending FFL 2015! That number, in itself is impressive, but when you consider how many people make up family then it's mind blowing!

- Anybody who is anybody in the world of diabetes attends this conference. Such as;

• Joe Solowiejczyk, who is coming to Thrive-abetes this October.

• Gary Scheiner, author of "Think like a Pancreas"

• Moira McCarthy, Diabetes Mom, Advocate, Autor of “Raising Teens With Diabetes: A Parent Survival Guide” 

• Tom Karlya, Master of Ceremonies and Diabetes Dad blog

• Scott Johnson from Scott's Diabetes

• Kerri Sparling, SixUntilMe

• Ed Damiano, Bionic Pancreas Builder

• Anna Norton, CEO of DiabetesSisters

• Kelly Kunik from Diabetesalicionsess and the #IWishPeopleKnewthatDiabetes hashtag

• Katy (pronounced Katie) Bigfoot Child has Diabetes

• Diabetes Hand Foundation staff; Mike Lawson, Melissa Lee, Emily Cole and Corinna Cornejo

• Sierra Sandison, Miss Idaho 2014 and #showmeyourpump and The Sugar Linings Blog

• Charles Kimble, professional race car driver and is the first licensed driver with diabetes in the history of INDYCAR. http://www.charliekimball.com/biography

• Manny Hernandes from http://www.tudiabetes.org/

to name but a few....

- It is huge. So big, some of the booths have play areas for the kids.
- They have childcare facilities, all ages of children programmes, tween and teen programmes, so that ALL of the grown-ups can fully experience the presentations.

They next FFL that might be of interest to folks is in London - however, this conference is sold out since last March.

But if you were planning your 2016 family holiday in America then why consider making the FFL 2016 conference part of your holiday in July? It's MORE than worth it!

I put together some of my photos from both of the conferences I attended in Orlando if you would like a better taste.

"Diabetes Hands Foundation, through the Diabetes Advocates program, covered the costs of my travel, registration and lodging while at MasterLab through a scholarship. That being said, the views and opinions expressed are my own

Surviving Jet Lag with Type 1 Diabetes

Living with type 1 diabetes is annoying enough but when you add jet lag on top of it - I just want to curl up in a ball somewhere and sleep. And that won't help in the least!

Myself and my family travelled to Northern Minnesota in America to holiday with family. I always find the jet lag travelling west easier to manage. We had travelled 22 hours to get to our destination. We arrived very late at night and so fell into bed.

I, usually, fall asleep immediately because of absolute exhaustion and I feel that with some sleep already in the sleep bank the crazy early morning isn't so bad. I do my best to stay awake all day and only give in again to the exhaustion at a reasonable bedtime hour.

It takes maybe 3 to 4 days for me to transition from waking at 4am in my US time zone to 8am. Done!

Thanks to SkyPro for image.

However, travelling east to get home proves more difficult.

Usually, my travelling east jet lag doesn't kick in until the second night home. The first night home, I fall into bed early and passed out. Again exhaustion prevails because I've had 2 hours uncomfortable sleep the previous night on the airplane.

The second night, I go to bed as normal, maybe even a little later because I know I'm going to have trouble getting to sleep. It's more frustrating because I'm just becoming more and more tired but unable to fall asleep. Eventually, at 2 or 3 am I will fall asleep but awake not fully rested the next morning. My feet will drag most of the day, and for every day that this continues.

On this occasion, though, I'm up drafting this post at 3am on the first night I have arrive home from said holiday. I did fall into bed at 10pm and pass out.

However, my son was woken up at midnight because a new toy with an alarm was continuously beeping and came into our room for help! I had deposited two hours in the sleep bank and now my body was starving for it's Minnesotan dinner because that's what time it was there. I can't get back to sleep. I was so looking forward to feeling somewhat human tomorrow and to be able to put sentences together again.

It's probably going to take about a week to work the travelling east jet lag off. It's frustrating because I know that lack of sleep has an effect on my blood glucose numbers. It also has an effect on my ability to resist temptation.

Addendum: Sure enough, my blood sugars have been crazy numbers for the past few days. My body is so confused; it obviously thinks I should be sleeping when I'm eating!! And I can't make any adjustments because I don't know when my internal body clock will WAKE UP and get with the Atlantic programme.

Sleep where are you?

The Little Purse

I know this is a first world problem but I wanted to mention it.

My mother in law is THE best mother in law in the whole world, she buys me flowers for mother's day every year! And I love that she does that.

She visited us in Ireland last April from Vietnam (in a nutshell, she is splitting the next two years between Vietnam and America, waiting patiently for my father in law to retire). And as you do when visiting from an exotic country, you bring presents.

She brought a collection of lovely items which were to be passed along to my family members if I didn't think I would use them.

I try to be the opposite of a pack rat because I like to leave room in my house for people and not fill it with lots of stuff that I never use.

I had passed on three items at this point, and we came to a lovely, hand made, perfectly sized zip purse, big enough to fit a phone, keys and a little loose cash. I've seen these purses and in fact my mother in law uses one regularly.

She didn't understand how I didn't use one! Of course it has taken me several months to figure out why it is I've never used one. Although, you probably figured it straight away?? Especially if you are a woman with type 1 diabetes.

I do however, just grab my keys, stick my phone in my pocket and carry my blood glucose meter in my hand when I do the school runs.

I'm a different species; the kind that needs to grab my blood glucose meter and glucose in addition to the phone, keys and cash. At that point, I might as well go the whole hog and bring a bag!

This tote was a freebie from the Friends For Life 2015 conference I recently attended. I was reluctant to take it at first because it's a very bright yellow but my "Loot" forced me to take it. It is a great bag - no matter how much I put into it, it never felt heavy! It has been tested:-D This is for you Kim Hislop!

Diabetes safety is......

​having a spare blood glucose meter.

Blood glucose meters are machines. Machines sometimes fail. What is your back up plan if your meter fails? Do you have a back up plan?

My two decades with diabetes has taught me not to rely completely on one gadget. I have a meter that I like to use most of the time, I have a meter that fits in my pocket when I'm just running out for school pick ups, I have a meter that I keep in the bedroom and I have a spare.

Probably not the best idea that they are all from the same company but three out of the four of them use the same strips and so makes life that little bit easier. And I do have a separate ketone meter that can be used for blood glucose.

So, I don't ever have strip waste and I have loads of options when it comes to blood glucose testing.... and no excuses

Register today for Thrive-abetes; The Thrive with Type 1 Diabetes Conference

I'm hoping that, by now, a lot of you have heard about Thrive-abetes? Thrive-abetes is a conference that I am, up to my neck, involved with. And it's very exciting! I can't wait to be in a room with 100 other adults with type 1 diabetes!!!

What is Thrive-abetes?

Thrive-abetes ; The Thrive with Type 1 Diabetes Conference and Exhibition is a one day conference for parents of children with diabetes and for adults living with type 1 diabetes. It takes place in Maynooth, Co. Kildare on Saturday the 3rd October 2015.

What is Thrive-abetes going to offer?

"Thrive-abetes" is a first-of-it's-kind event in Ireland - a conference organised by people with type 1 diabetes for people with type 1 diabetes!

This Type 1 Diabetes conference is going to focus on the psychological impact of living with a chronic, lifelong illness. We aim to provide “Inspiration, Motivation and Information” to people living with type 1 diabetes, both parents of children with diabetes and adults, at our conference.

Our speakers include internationally renowned diabetes healthcare professionals, living with type 1 diabetes and nationally recognised diabetes healthcare professionals.

View our conference programme here.

Conference tickets cost €35 per person, or €60 for two tickets. Registration is open through this link https://thrive-abetes.eventbrite.ie. Lunch and refreshments will be provided to all delegates. More details about the Thrive-abetes schedule is available from http://thrive-abetes.blogspot.ie/ or by sending an email to thriveabetes@gmail.com.

If you are interested in making a weekend of it The Glenroyal Hotel has a discounted rate for all Thrive-abetes Delegates plus a number of rooms blocked off for the conference. When you are booking you must quote Delegates Reservation No 172691. interested Room rates are available here.

Continuous Glucose Monitoring - my second week

My first week with my CGM was very much in awe of it - my second week was about using the information to reign in my diabetes management.

People get anywhere between seven to fourteen days out of a continuous glucose sensor. I was lucky enough to get reach over 14 days.

In my second week, I started to look at the data in detail and find trends. I downloaded the data from my insulin pump to the Animas software programme, Diasend. With this software I can create reports that tell me what my average blood glucose readings were at each time of the day for any time period I choose.

In particular, I wanted to address my night time basal insulin rates and the fact that it bounced up and down like a rubber ball from 10:30pm til 4am. I selected my date as Monday through to Friday. From the report created, it looked like my evening basal rates were too low and my dawn phenomenon cover was too high.

I made the adjustments and have had a couple of hypos, so I still need to tweak my rates. However, my one and only sensor, because I had it on trial, had bitten the dust and I now feel like I'm flying blind.

I really miss having the extra information to make daily decisions about my insulin dose. The CGM not only gives you an indication of what your blood sugar is, it also indicates, with an arrow, in which direction it is heading. Or a double arrow if it's going there quickly!

This information is soooo useful especially at bedtime. A blood sugar reading of 6.8 mmol/L(122 mg/dl)and holding is much better than 6.8 and dropping.

I hope to apply to the HSE long term illness scheme for funding for a CGM but with holidays and a family wedding it will be, at least, September before I knuckle down to that.