Wednesday, 17 December 2014

Christmas and Type 1 Diabetes.

Christmas is almost upon us and people with diabetes tend to approach holidays like this one with dread. We do tend to go a little bit insane with all the chocolate, boxes sweets, tins of biscuits, and mince pies.

Anyway, people have asked for a number of years at my support group about tips for dealing with Christmas and we've shared some valuable tips. Lots of them can be found on other blogs (sorry).

For me, Christmas is about one day. I don't have any office parties to go too, being a stay-at-home mum. I have a couple of coffee mornings with other Mums and I do have a birthday 9 days before christmas but I don't go nuts. It's more about the company than the food. I have dinner and cake and deal;-)

Christmas day is a "limited" day off from diabetes. I do my blood glucose tests, I guestimate the carbs as much as possible, I bolus and bolus conservatively and probably bolus some more. If I fancy the food I eat it. I stop when I'm full. We have potatoes A LOT in Ireland for dinner and on Christmas day I usually skip them altogether in favour of stuffing. It usually works out - call it a christmas miracle :-)

When we visit my husband's family in the US for Christmas there is usually so many activities going on that the food is an after-thought. Plus, there are so many of us that the goodies "disappear" extremely quickly.

I don't tend to sit around a lot on Christmas day either; we travel to my mothers down the country for dinner and once the dishes are done, we move ourselves to my brothers house for the present giving.

For others, Christmas Day usually isn't the problem though, it's the numerous parties, and giving into the grocery department's tempting treats in the 6-8 weeks that run up to Christmas. (When did we all start making this holiday about food?)

My approach is; for Christmas day, I let my hair down and don't worry about that one day. But for the rest of December all the rules apply and as soon as the children go back to school it's back to the old routine.

I hope you all find ways to cope with your Christmas and enjoy it.

I will be taking a break from blogging until the New Year, so....

Happy Christmas, Happy Holidays!!!
















Wednesday, 10 December 2014

Elephants never forget... just get distracted

21 years with type 1 diabetes and this very seldom happens but it does happen. I did say to myself "how is it possible that I forgot to bolus for a meal?" 

Then I reminded myself that it usually happens when a young person starts a sentence with "Mom ...".

Anyway, I very rarely forget to take my bolus insulin but this morning I did. It was breakfast. I usually catch the error when I'm expecting my insulin pump to notify me that it's been two hours since I bolused and that I should be my post-meal blood glucose test. This morning I had the added incentive of my weekly coffee morning and wanting to test before I left the house. 


I tested and I was 17.8 mmol/ls (323 mg/dl)!!! I knew I had started the day with reasonable (i.e. single digit) number, so I went into my pump history to see if I actually bolused. Surprise!!! No bolus, thank goodness for insulin pump histories. 

I took my correction bolus of 2+ units and wondered how taking my insulin before breakfast can make such a HUGE difference? I have a medium sized bowl of porridge (I know, boring but reliable) and take 0.60 units which usually brings me in a little under the target for the two hours post-meal test. However, two cups of coffee later I'm on target for lunch.

I'm surprised that 0.60 units make such a difference, compared to the 2 units I needed to cover my breakfast two hours later.

I pause for thought!

Wednesday, 3 December 2014

Do you ever feel like all you see are the Highs and the Lows?

When you look at your record book, do you ever feel like all you see are the high blood glucose readings or the lows. Do you ever notice that you have a number of decent readings but that they don't count?

I test approximately 8 times a day and last night I realised that most of those readings were fairly decent, as in fairly close to my targets.

But when I went to bed last night all I was think about was the 12mmols before bedtime and how it was going to be high again in the morning. I then realised that the other 7 readings I took that day were decent (I'm not going to jinx it by saying they were good).

I seem to focus on the ones that are high and the few that are low. I know that I have to think about those readings more so that I can try to eliminate them but shouldn't I think more about the good readings to keep my head in a good space?

I'm being hard on myself. My endo always tells me that and that it's never as bad as I think. I suppose I'm afraid to give myself a pat on the back when I'm doing well because, no. 1 is it really my work that is to be credited, I mean who knows, it could just be all the stars lining up in the universe. Or No.2, I'm afraid to give myself a pat on the back because I might just get complacent and let things start to slide.

Or is it just because tomorrow is another day with diabetes. 

Wednesday, 26 November 2014

Why does my diabetes not stay the same?

Life with type 1 diabetes is always changing. That's probably THE most frustrating part of diabetes, well for me, for today anyway.

Three weeks ago my blood sugars after my dinner were skyrocketing up into the high teens and twenties. I haven't changed my routine in any way, the food is the same, my stress levels might be a little elevated but not too much.

This trend of high blood sugars after my meal (postprandial) continued for the week and my instructions from my endo are that if something happens for two days in a row then on the third day take action to prevent it. I usually let it continue for a couple more days though just to be sure that it's not something random happening twice (you never know do you?).

I considered all the options that were available to me. I could decrease my insulin to carb ratio for dinner, or I could increase the basal rate on my insulin pump from dinner time until bedtime. Or both but I decided that this was a bad idea. It's better to try one change at a time as too many changes at the same time can leave you guessing which one is to blame if you start having hypos.

I chose to decrease my insulin to carb ratio from 1 unit of insulin to 10 grams of carb (1:10) to 1:7grams. It worked just a little too well on the first night and I ended up with lows for the rest of the evening. So the next night I tried 1:8grams. BINGO! That's the perfect number.... for now anyway.

My next question is why did my insulin to carb ratio have to change for no apparent reason? I mean, I've been at 1:10 for a number of years. AND it was so easy to work out 1:10gms. Now I have to actually use a calculator cos I'm terrible at math.

Ah well, it's nice to solve a diabetes problem. I have so many others that I can't solve.

Wednesday, 19 November 2014

Type 1 Diabetic Hopes

Inspiration to live well with diabetes can come from the most unexpected sources. The inspiration from this post came from an essay entitled "Type 1 Diabetes - My Many Fears" written by Australian, Alex Williams.

His essay is very well written and even resonates some of my own fears. But as they old saying goes "a life lived in fear.... is a life half lived". So I am packing up those old fears (for today) and putting them in the attic part of my brain for when I might need them and I'm going to think about hopes.

I hope, someday, to be an octogenarian and proudly announce that I have lived 60+ years with type 1 diabetes and that apart from a few aches and pains I have no serious diabetes complications. I do have high hopes.

I hope to be fit enough to run and play with some of my future grandchildren. This is really my biggest dream. I've loved being Mom but being Granny won't have all of the angst.

I hope that in less than five years (that's 2019) the artificial pancreas/closed loop system will be available in Ireland.

I hope that that our health service has all the services in place so that the Artificial Pancreas is easy to access for all people with diabetes.

I hope that in 5 years that 80% or more of people with diabetes in Ireland will have been offered an insulin pump and/or a Continuous Glucose monitor.

I hope that some day in the near future that all people with type 1 diabetes will be able to access structured education where they are receiving their diabetes care. And that all Type 1 diabetes centres have more than 1 (but even 1 would be good) Diabetes nurse specialist, Dietitian and Phycologist.

I hope that, one day, there is a cure. 

Friday, 14 November 2014

World Diabetes Day 2014

It's HERE!!!!

World Diabetes Day falls on November 14th every year - it's a global event! But what is it? Any why make a fuss about diabetes anyway?


Well, if you have type 1 diabetes, or any type of diabetes, its a day to celebrate being alive. If any of us were diagnosed before 1922 none of us would have what we have today, our children wouldn't have been born, we wouldn't be alive!

92 years ago a couple of scientists made it possible for people with diabetes to live. Before 1922, people and children diagnosed with type 1 diabetes died within four months.

So I celebrate the day that Sir Frederick Banting was born, November 14th. And I celebrate that he met and worked with Charles Best

AND, not only are people with diabetes living today, we are thriving! So I’m not really celebrating having diabetes. I’m celebrating life and the quality of it.


Wednesday, 12 November 2014

Did you test Mom?

Yesterday, I wrote about my son, so today I'm writing about my daughter who is 10 and who makes me so proud everyday.

Mondays evenings are tough in my house. Especially, when the chef (i.e. hubby) is on a business trip!!!

I usually cook dinner before swimming lessons and then heat it up when we get home. Last Monday, while I was waiting for dinner to reheat, I tested my blood glucose and took my bolus.

I normally do this when I sit to the table.

I should probably explain that we also have a "good table manners" policy at the dinner table. This means nobody can start eating until everyone is at the table with food in front of them. I know we're weird in our house!

We do have one addition to the rule; everyone can start eating if everyone is at the table with food in front of them and if Mom is testing.

Last Monday, when we all sat at the table and we all started eating and my daughter asked; Did you test Mom? Here was me thinking that they really don't see any of my diabetes stuff any more, especially since the time my daughter said "that's new!" referring to a new glucose meter I had gotten one year earlier.

You never know with children do you? I just hope she doesn't ever become a member of the diabetes police!

My young lady

Tuesday, 11 November 2014

Diabetes is your career Mom, isn't it?

I have two children aged 10 and 3/4 and 8 years, whom I am so proud of and absolute adore.

My 10 year old has figured out a lot of things about the world works already, but my 8 year old is still working things out. He figures things out vocally and has a very different way of thinking than I do. Actually, I think he has a different way of thinking than most of the world:-)

I love watching his face as he processes information and draws a conclusion. But, sometimes he in a completely different direction.

He was thinking about "Careers". Why? I haven't got a clue. He announced that his Dad does not have a career (despite the fact that he works from home and has spends his whole day in his office) but I that do and that my career is diabetes. Huh!?!

He obviously didn't really know what the word meant. I think he thought that an illness was a career! So we explained what the word really meant. And it made sense to him. Dad works in computers and  Mom is a stay-at-home parent. So all good there.

My Superhero!
I continued the conversation in my own head of how it was possible for him to think that my career was diabetes. Did someone tell him career was something that you do and all he sees me "do" are things to do with diabetes (because housework is done by fairies).

Was it because whenever I leave the house in the evenings that it's to go to my monthly diabetes support group meetings? And that is something I do.

Is it because both my husband and myself volunteer with the national diabetes charity, Diabetes Ireland and so talk a lot about it at the dinner table a lot? If so, we really need to scale that back.

As they say "out of the mouths of babes" and I will never know what's going on in my precious child's head but I hope it continues to make me think deep and entertain.



Monday, 10 November 2014

Life for a Child with Diabetes

People with diabetes in Ireland don't have it all when it comes to our diabetes. We don't have huge access to insulin pumps or continuous glucose monitors or structured type 1 diabetes education. Some of our type 1 clinics don't even have diabetes dietitians or diabetes nurse specialists. But, we do have unlimited access to access to insulin!

Do you remember the day you or your child was diagnosed with type 1 diabetes? Imagine if the doctor then told you that a vial of insulin cost so much money that you could not afford to buy it. Imagine you lived in a country like India, Haiti, or Ecuador, where no-one else could afford to organise a benefit night to raise money for insulin. What would you do?

"Without insulin, a child with type 1 diabetes will die within a week. In the developing world, many die without being diagnosed; for those who are, their family faces a sickening dilemma: pay for the insulin their child needs to survive or leave him to die." 

This is the situation for a lot of parents of children with type 1 diabetes in these developing countries. How is it possible that almost 100 years after insulin was discovered there are still children in the world dying from type 1 diabetes, not from complications but because they don't have insulin.

These children don't get the chance to worry about the danger of night-time hypos, or the risk of developing complications.

I’m very grateful to my government for paying for all of my diabetes medication and supplies. I know that if I did have to pay for all of it that I would find it extremely difficult financially. But if the government asked me to contribute to the cost in someway I would be able to do that. 

But, the government haven’t asked me and until they do I'm going to donate a little bit every year to the International Diabetes Federation's Life for a Child programme because I'm so lucky to be born where I was born.

Life for a Child is currently helping 14,000 children in 46 countries to have a reliable and steady supply of insulin, while working with the existing healthcare services to strengthen them.

Friday, 7 November 2014

People w/Diabetes are Amazing; People with Type 2

World Diabetes Day 2014 is Friday the 14th of November. This is the third and final instalment of "People with Diabetes are Amazing!" series. The first instalment featured Parents of children with diabetes, the second People with Type 1

Meeting other people with diabetes is my inspiration for living well myself with diabetes. They rock! They are so resilient. So, as we approach World Diabetes Day I thought I would celebrate how awesome people with diabetes really are. Next up is...

People with Type 2

There is supposedly safety in numbers and people with type 2 do make up the numbers but I don't think that make people with type 2 feel any safer.

The world's media tries to tell people with type 2 that they brought diabetes on themselves. Yet, they come out ready to take control of their diabetes.

The old breed of person with Type 2 diabetes would have accepted limb amputation, blindness and kidney failure as their fate. The old breed would never have known about diabetes education. They would have known type 2 diabetes as the "Silent Killer".

The new breed of Type 2 person is defiant, resilient, willing to learn new things, has a thirst for the knowledge to manage their diabetes. They want to overcome!

I have met so many people with type 2 and they inspire me as much as my own crowd because they tell me all the time that they are not going to be that old breed of person with type 2. They shall overcome!

Of Notable Mention;

There are many more types of diabetes and people who live with any type are equally amazing. I chose the types because I know a little more about those than I do about LADA or MODY or any of the others.

To ALL people with diabetes and here's to breaking down the barriers!!!


Wednesday, 5 November 2014

Where to find Diabetes Support in Ireland

We have professional support from our clinics, consultants and diabetes nurse specialists. We also have professional support from Diabetes Ireland, our national diabetes association, who also have a facebook page.

Thankfully, since the take off of social media Diabetes Support Groups are becoming easier to find and peer to peer support for people with diabetes is growing.

Here is a list of what is available nationally in alphabetical order:


There may be other groups that I don't have details for and I apologize if you are not on the list. If you would like to be included on this list please leave your details in a comment below.

Tuesday, 4 November 2014

People w/Diabetes are Amazing; People with Type 1

World Diabetes Day 2014 is Friday the 14th of November. This is the second of three installments of "People with Diabetes are Amazing!" series. The first installment was about Parents of children with diabetes.

Meeting other people with diabetes is my inspiration for living well myself with diabetes. They rock! They are so resilient. So, as we approach World Diabetes Day I thought I would celebrate how awesome people with diabetes really are.

I think all people with diabetes are amazing! Life threw us the challenge of living with diabetes at us and it made us feel that no challenge was too much. I have divided my homage into 3 groups of amazingness and next up...

People with Type 1

I actually fall into this group myself but I won't be talking about me. I want to talk about all the amazing people I've met in my support group and all the people with type 1 that I admire out there in the big, big world.

The people with type 1 that I have met over the years are so inspiring, so resilient, so defiant. I've met people who have lived 50 years with type 1, lost their sight because they happened to live with diabetes before so much was discovered about it. People who used to boil glass syringes to sterilize them before they could use them. These people still get up every day and say "no diabetes; you don't win today".

I also love to read about people with diabetes breaking through the barriers that others perceive to be around us; 

Douglas Cairns, pilot, diabetes advocate
Kris Freeman, Olympic Skier
- HG Wells, The famed science-fiction author who also helped set up Diabetes UK.
Kerri Sparling, blogger, author, diabetes advocate.


I read about and am always inspired by people like;

Stephen Clancy, professional cyclist,
Catherine Brady, 4th time world champion kickboxer from Dundalk
- Kenneth Sweeney, former senior county footballer; Sligo
Sierra Sandison, Miss Idaho 2014 who brought the worlds attention to type 1 diabetes.
- Ella Locke, who at 10 years old hiked the 154kms of the Scottish Highland with her dad to raise money for diabetes. 

and many, many, many, more......................

Monday, 3 November 2014

People w/Diabetes are Amazing; Parents of Children with Diabetes

World Diabetes Day 2014 is Friday the 14th of November. I didn't plan this very well but from the 1st of November until the 14th I'm hoping to have a daily diabetes awareness post on my facebook page (fingers crossed). This is the first of three installments of "People with Diabetes are Amazing!" series.

Meeting other people with diabetes is my inspiration for living well myself with diabetes. They rock! They are so resilient. So, as we approach World Diabetes Day I thought I would celebrate how awesome people with diabetes really are.

I think all people with diabetes are amazing! Life threw us the challenge of living with diabetes at us and it made us feel that no challenge was too much. I have divided my homage into 3 groups of amazingness starting with...

Type Awesome - The Parents!

I wanted to start with the people who take care of the little people with diabetes, the people who guide and mentor young people with diabetes, the people who are generally referred at Type Awesome on social media; the Parents of children with diabetes.

How difficult is it to try to figure out what is going on in someone else's body, in particular, a body so tiny he/she doesn't know how to speak yet? Parents of children with type 1 diabetes do this all day every day!

Did you know that most parents of children with type 1 diabetes seldom get a full night's sleep? I survived a couple of months of interrupted sleep with my newborns. I can't imagine doing it indefinitely. Surviving years of that takes something deep down.

Photo from 
http://integrateddiabetes.com/
children-with-type-1-diabetes/
A parents worst nightmare is when something happens to their child that threatens their childhood and these parents have to find a way to get past their grief and heartbreak that their child's carefree childhood has been lost, so that they can protect what's left. It isn't easy and it's not something most parents can do alone.

And that's not even half the story; check out blogs from D-Mum, Moira McCarthy or the D-parent bloggers, such as Olly Double on Diabetes UK.


Wednesday, 29 October 2014

Diabetes and Mental strength

I was reading a blog entry on TypeOneNation.org by Kady Helme recently, about her trial of the artificial pancreas. I was actually really excited to read it because I had imagined that wearing the artificial pancreas would be like not having type 1 diabetes at all. Especially after listening to Aaron Kowalski, JDRF's Vice President of Treatment Therapies at the Friends For Life UK conference in Windsor.


Anyway, it is a well written piece and not at all what I was expecting. I had a "stop-me-in-my-tracks" moment though as I was reading it, where Kady used a phrase that I feel encapsulates the big struggle we face every day in living with type 1 diabetes. The "struggle" that is sometimes there a lot or sometimes there only a little. She wrote; "It wasn't until I was without the AP system that I understood what a mental burden had been lifted.  It was such a treat to have something monitoring my sugar levels every five minutes and reacting to it. I only really had to focus on T1D at mealtimes."


We have lots of daily tasks that we need to do to live well with diabetes and that's what most people think is the difficult part of living with Type 1. But really, the finger sticks and injections are just small things in the big picture. Its what's going through our minds as we continue on with our day beyond the time it takes to complete those tasks. The "what if's", the toing and froing of the guesswork, the checklist of questions we have to go through before we make a decision on how much insulin to take. Questions like; when did I last take insulin and what did I eat at that time? Have I been active this morning? What am I going to do this afternoon, is it going to be active? When am I having my next meal? Will I have time to eat?


Any treatment for type 1 diabetes that can lift that mental burden even just a little is as good as a cure to me.

Tuesday, 21 October 2014

Diabetes De-Cluttering

I am a house wife! And as a housewife I, sometimes, while in the middle of doing one task, will immediately decide another task is more important and switch. I don't know how I ended up on my knees, on the floor of my bedroom wardrobe but I did, and that's when I noticed once again my emergency diabetes supply stash. You know the back up meter that never gets used, the needles for Novapens, old meter cases in case some day another meter fits into it or just in case the current meter case gets something gross spilled on it. You get the idea. I even have my old record books and my old Long Term Illness book from before I moved to the states and came back (hint 8 years ago). Those I keep as mementos or for posterity - "Look, what I used to do back then"

Anyway, I performed a de-cluttering of old meter cases and old, out of date meters. Here's what I recycled; The Accu-Chek Compact Plus was a meter I got in 2002! Meters have evolved so much that there is no point letting the ones that I, or anyone else, will ever use, take up space.

This is the nice little pile I have left. (Note, I am not showing the stack of record books on the shelf below.)


However, I have a number of other "piles" of diabetes supplies all around the house that need a bit of de-cluttering.

#walkwithD

Wednesday, 15 October 2014

My Night-time Basal Rate Tests

Basal insulin refers to our background insulin; the insulin our body needs when we are not eating. People who are on multiple daily injections (MDI) would have their basal insulin in the form of Lantus or Levemir. People on insulin pumps divide their day into sections and would programme their pump to deliver their basal insulin at different rates during the day.

For instance I have divided my day into midnight to 4am, 4am to 7am, 7am to 12pm, and so on. I have programmed my insulin pump to deliver my insulin at different rates for all of those times.

I perform basal rate tests when my blood glucose readings go a bit mental and persist in being mental. My fasting blood glucose have been acting up for a couple of weeks now and I decided that it was time I figured out why.

So, I tested at 10pm, before going to bed, which is normal for me. My result was 6.7mmol, great! So, I'm all set.  I set my alarm for midnight for my next test and fell asleep pretty quickly. The tests followed every 2 hours and results were 5.8, 5,4, 6.3 and 6.1. WHAT!!! I couldn't have wished for better readings.

Initially, I thought to myself that I had just put myself through an interrupted nights sleep for no reason. But the results are telling me that my nights are not the problem and that I need to look at my basal rates for during the day. The thought of doing this is more stressful because it involves skipping a meal and during the day I take care of my children. I'm nervous about both of those things.

However, Joe Solowiejczyk suggested that my husband could help out a little with the driving and the children so that I didn't panic too much about it. I think I'm mostly worried about driving under 5mmols. Then, in the last month my husband has been travelling on a weekly basis.

So, it looks like I'm just going to have to "man-up" and practice lots of deep breathing.

More information on Basal Rate Testing can be found here; http://www.diabetesselfmanagement.com/articles/insulin/getting_down_to_basals/all/




Wednesday, 8 October 2014

Am I hiding my diabetes?

I've been a person with type 1 diabetes for over 21 years. And some days it seems that I don't have any interest other than diabetes. I read ALL the blogs and participate in a number of Facebook groups, I subscribe to Diabetes Daily, A Sweet Life, Insulin Nation, and many, many more. I volunteer with my local Diabetes Ireland group and organise my support group.

But, recently, I feel like I'm hiding my diabetes!?!

While my daughter attends her piano lessons, I wait outside the class with my son. I chat to another Mum whose children go to my children's school. During my daughter's lesson my insulin pump vibrates to remind me that it's two hours since my lunchtime insulin bolus and it's time to check my blood glucose again.

I turn it off rather than test in front of this mum. It's not because of the mum; she's really nice and I admire her a lot (raising 5 children and completing her HDip!!), it's because as soon as I take out that glucose meter I know what we are going to talk about. And I'm tired, and I have had my afternoon caffeine.

I'm surprised that I do this, I didn't plan it. Then, I thought about my Friday morning coffee meet-up and I've chosen not to do blood sugar tests in front of them either for the same reason. I had decided that I didn't want to be that person, you know, the diabetic. But also I think I need to have diabetes-free time.

I know it will come out eventually but for now I enjoy talking about everything other than diabetes with all of these interesting people. Diabetes is part of me, a significant part but it's not all of me.


Wednesday, 1 October 2014

Diabetes Little White Lies

I am guilty of using my diabetes to get myself out of stuff. And don't even try to tell me that you haven't too. I've talked to people and I know I'm not alone.

Only as a last resort though. I don't know how many boring Rich Tea biscuits I was offered before I decided to say No thanks", and when Fr. Ted's Mrs Doyle appeared I used the diabetes.

But I think I've taken it to a new level now that I'm a mother.

I've used the "my blood sugar is low" excuse for having an afternoon treat, when my children have asked why I'm having sweets in the middle of the afternoon. The rule in our house is that you can't have sweets or desserts if you haven't done a good job on your dinner. It applies to everybody! But sometimes I just need a little piece of chocolate.

The truth of this particular situation is that its the afternoon slump and I'm having tea or coffee and just want a little something to give me a boost. Or I'm too tired to resist temptation or an honest reply.

Does this make me a bad person? I think not, it makes me a Mother who survives;-)

Wednesday, 24 September 2014

FFL/Children w/Diabetes, UK 2014 Diabetes Burnout

Avoiding and Overcoming Diabetes Burnout

Presented by Jill Weissberg-Benchell who is a licensed clinical psychologist and a certified diabetes educator for 20 years. She also co-wrote Teens with Diabetes: A Clinician's Guide which is available on Amazon. She currently works in Chicago, Illinois.

Do you know what Diabetes Burnout is? If you don't, you are so lucky! But I'm thinking that a lot of you know EXACTLY what it is. Or maybe you're not lucky, that you have experienced it but didn't know what it was called.

For me, diabetes burnout is the feeling of being done with diabetes, I feel so tired of having diabetes, tired of having to do all the things that I do to keep well. I still end up doing all of the tasks of type 1 diabetes but I don't have any energy left to process the information to make the changes that would make life better, easier.

So, I was especially interested in this session because I've been finding it more and more difficult to fight burnout and wanted more knowledge and power over it.

Firstly, let me tell you about how Jill Weissberg-Benchell should be worshipped. She does not have type 1 diabetes but she understands type 1 diabetes like she has it! People like Jill are few, very few. She could describe scenes from our lives as if she had been to all of our homes and witnessed it herself. She really got everyone in the room talking. 

However, I was a bit disappointed in the session because even though we laughed, cried, shared and patted each other on the backs; it was dominated by parents of children with type 1 diabetes. Usually, this isn't relevant but when the parents were sharing how they avoid burnout with weekends away from their children I was a "smidge" jealous. 

But my envy was short lived. Parents really do have a tough time and while I can't get away from my diabetes, I only have to take care of myself; I know exactly how I'm feeling at all times. I don't have to guess like a parent has to with a child.

That aside; Jill was a mine of information. She reassured us that today there is only a 3% risk that people with Type 1 will develop complications. I had suspected that this was true because of the better management tools and treatments available today. Its nice to have someone say it.

Also, when someone in the room voiced everyone's biggest fear; "dead in bed" syndrome, she said that in most cases (not all but in most) dead in bed is caused by alcohol or drugs. And I believe her because she is a medical professional, has access to the data, and because I need to believe her. 

I did get something out of this session that I hadn't expected. I realised that one of the ways I tackle burnout is through my diabetes support group. I always feel uplifted when I meet my other D-people. I do the opposite of what parents of children with diabetes do; I immerse myself in all things diabetes to try and avoid burnout.

Attending the Friends for Life UK conference in London was definitely exceeded all of my expectations and I met some fantastic people from the world of diabetes. People like Melissa & Lesley from InPuT Diabetes, Angela from Scotland, Joe Soloweijczyk from A Mile in My Shoes, to mention but a few. 


Friends for Life UK 2015 has been scheduled for October 30th to November 1st. More details will be announced on www.childrenwithdiabetes.com website.

Thursday, 18 September 2014

FFL/Children w/Diabetes, UK 2014 Diabetes Research; What's coming?


This talk was presented by Aaron Kowalski, from the Juvenile Diabetes Research Foundation (JDRF). Dr. Kowalski oversees JDRF-funded research aimed at accelerating the delivery and development of artificial pancreas systems.

He is also a person with type 1 diabetes and was diagnosed at the age of 13 in 1984. Prior to that, in 1977 at the age of three, Dr. Kowalski's brother was diagnosed with T1D.

This talk was the most EXCITING and positive that I attended over the 2 days because I came away from it with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is only a couple of years away.


Artificial Pancreas (also known as a Bionic Pancreas or the closed loop system);


What is it?

There are two types of Artificial Pancreas, which confused me for a time. One Artificial Pancreas is a combination of an insulin pump containing rapid acting insulin, a Continuous Glucose Monitor (CGM), and a device such as a tablet or smartphone, which runs the software that communicates with both the pump and CGM.

The other type of Artificial Pancreas is two pumps, one pump contains insulin and the other contains glucagon, a different hormone that raises blood sugar when it gets too low. This system has an app that runs on an iPhone, which is connected wirelessly to CGM. This Artificial Pancreas was developed by Ed Damiano, an associate professor of biomedical engineering at Boston University.

Both Artificial Pancreases have successfully completed clinical trials and are very close to being “available”. In fact, we had a parent attending the talk who's daughter is participating in the overnight closed loop trials. She showed us a tablet with her daughter's overnight readings presented in a graph. It was such a straight line!

Why are people excited?

  • Both of these systems will take the guess work out of diabetes management.
  • There is minimum input from the user.
  • The Artificial Pancreas uses a pump that will shut off the supply on insulin if bloods glucose is trending low and will switch back on when BG’s come back into range.
  • Ed Damiano’s Artificial Pancreas releases glucagon to raise BG’s when they drop.
  • And it’s close to being widely available. Dr. Kowalski said that people would have it in two years and if you factor in the “builder’s estimate” calibration, I would estimate 4 years.

My concern, now, is how far behind in diabetes technology Ireland is in relation to providing insulin pumps for all. When the Artificial Pancreas becomes widely available and people start demanding it; there will be trouble.


Beta Cell Encapsulation;


What is it?

About a decade ago there was considerable excitement in the T1D community about islet cell transplants–the transplantation of insulin producing cells back into the body. But islet transplants have a big downside: high doses of potentially toxic immunosuppressive drugs are needed to block the same autoimmune attack that initially triggered T1D.

Encapsulation describes a therapy where a pouch composed of beta cells or islet cells, surrounded by a protective barrier, is implanted into the body. The barrier hides the islet cells from the immune system, providing a safe environment where they can function normally. The cells constantly assess the amount of glucose in the blood and release exactly the correct amount of insulin. And unlike islet transplants, no immunosuppressive drugs are required.

Why am I excited about this?

I'm excited about this because in my opinion its very close to a cure. There are no gadgets to wear. You would have to have them re-implanted every two years but that’s nothing compared to all the tasks I do daily to manage my diabetes.

Encapsulation is still a ways off but I'm really hopeful to see it in my lifetime.


Smart Insulin/Glucose Responsive Insulin;


What is it?

Smart Insulin is an insulin that would only activate when glucose if present in the blood. One of the problems in today’s diabetes management is that we can sometimes have too much insulin causing low blood sugars/hypos or too little insulin causing high blood sugars.

I’m sitting on the fence with this one; I don’t think I know enough about it.


Afrezza inhaled insulin;


What is it?

I will have to admit that when I heard the scientists were having another go at the Inhaled insulin I rolled my eyes. But having someone explain what it is and be excited about it got me interested. Not excited though;-)

Yes, it’s an insulin you inhale but it has a peak of 12 minutes. it works extremely fast and has been used instead of boluses, by Dr. Kowalsky himself. It works so fast that you can use it after meals and still avoid the after meal spike.


Diaport;


What is it?

This is not a new treatment option; it’s actually something that is available but isn’t very popular. I'm including it because I had never heard of it before.
The Diaport is a cannula that is surgically inserted into the stomach cavity, so the insulin works much faster than being infused with a pump cannula. Dr. Kowalski said that one of the problems with the current insulins is that they're too slow and can’t deal with the post meal spikes in blood sugars. Someone in the audience then spoke about the Diaport.

I love learning new information but this treatment option seemed like a last resort to me.


Regeneration;


Did you know that people with Type 1 Diabetes still make beta cells, no matter how long they have had it, but the immune system kills them before they can get making insulin. Regeneration is trying to find a way to protect them or fix the glitch in our immune system that takes them out.

Another one to watch but too far away to get excited about yet.


Round up.


As I mentioned earlier this was the most exciting talk that I attended. It was difficult not to be infected with Dr. Kowalski’s enthusiasm and excitement. But also being in the same room as someone who was using the Artificial Pancreas was electric. I feel that being so close to the technology was a signal to me that it is close and that we are actually talking about a couple of years.

Ireland better get it’s skates on!

Monday, 15 September 2014

Get out and meet some Diabetes People....

living in Ireland. You won't regret it! There are a number of Type 1 Diabetes events all over the country this Autumn.

Most of the events below can be found on the Diabetes Ireland Events Page.

Date

Event Details
24th  Sept
Type 1 Diabetes meeting at 8pm in the Westgrove Hotel, Clane, Co Kildare with a Medicon / GlucoMen Sales Representative who will supply blood glucose meters.
Contact Davina on email; davinalyon@gmail.com

25th  Sept
Due to unforeseen circumstances this meeting has been cancelled. Cork Type 1 Adults support group
If you would like information on future Type 1 meetings contact tel: 021 4274229 or email: sro@diabetes.ie

1st  October and the 1st Wed of every month
Dublin Type 1 Adults Support Group in the Novo Nordisk's Offices, 2nd Floor, 2 Hume St, D2 at 6:30pm
Contact: t1diabetic.dublin@gmail.com and https://www.facebook.com/groups/169847736412651/

4th October
Get off your bum for Type 1 Diabetes. Do you have Type 1 Diabetes and are interested in running / walking or are keen to get fit? Join the Tallaght Hospital Type 1 Diabetes team in a 5k on Saturday 4th October at 9.30am in Marley Park, Grange Rd, Rathfarnham. It is FREE to take part in this 5k.Just register online at www.parkrun.ie/register/ Meeting point: Café behind Marley House at 9am
Contact: t1diabetic.dublin@gmail.com and https://www.facebook.com/groups/169847736412651/

5th  October
Family Walk organised by the Limerick/Clare/Tipp Parents Group at 10.30am suitable for all ages, it is a 2.5 hour walking circuit and smaller children can be driven closer.
Contact Olivia Sweeney email: olivia.sweeney@coachingireland.com for more

8th  October
Teacher Training Day for Principles, SNA’s and Class teachers on how to cope with having a Type 1 child in the Classroom.
This is a free event organised by the Cork Parents support Group. Please registration to participate.
Contact Charlotte on 021 4274229, Email: sro@diabetes.ie, or Diabetes Ireland

11th  October
A Family Fun Day will be held in the Mardyke Arena, UCC, Cork. The day is being run by the Cork parents support group, registration essential. More details soon.
Contact sro@diabetes.ie or 021 4274229

14th  October
Managing my Child with Diabetes - Portlaoise. Diabetes Ireland in partnership with Bayer Diabetes Care presents this meeting for parents of children with Type 1 diabetes in the Killeshin Hotel Portlaoise. Speakers include: Dr Paul Gallagher, Consultant Paediatrician, Midlands Regional Hospital, Portlaoise, “Current & Future Management of Type 1 diabetes in the Midlands region” Ms Georgina Doyle, Diabetes Nurse Specialist, Midlands Regional Hospital, Portlaoise.
Contact Tel; 1850 909 909  or email: info@diabetes.ie for more information

14th  October
The Clare Type 1 Diabetes Support Group with Neil Pakey, CEO of Shannon Airport, a person with type 1 diabetes for 30+ years, at 8pm in the Temple Gate Hotel, Ennis. The meeting is free to attend and is open to anyone who wants to learn more about Type 1 Diabetes.
Email: Grainne at clarebranchdfi@gmail.com if you would like information about future Clare Type 1 Diabetes get-togethers.


15th  October
Managing my Child with Diabetes – Drogheda. Diabetes Ireland in partnership with Bayer Diabetes Care presents this meeting for parents of children with Type 1 diabetes in the D Hotel. More information on speakers and topics will be available nearer the time.
Contact Tel; 1850 909 909  or email: info@diabetes.ie for more information

5th  November
Managing my Child with Diabetes - Limerick. Diabetes Ireland in partnership with Bayer Diabetes Care presents this meeting for parents of children with Type 1 diabetes in the Castletroy Park Hotel. More information on speakers and topics will be available nearer the time.
Contact Tel; 1850 909 909  or email: info@diabetes.ie for more information


    


Wednesday, 10 September 2014

FFL/CwD, UK 2014 Part 2; Continuous Glucose Monitoring

More from the Friends for Life Conference UK 2014.

Continuous Glucose Monitoring: 
What Difference Does it Make?

presented by Lesley Jordan & Melissa Holloway from INPUT

Lesley is the Chairperson of INPUT, I would recommend Irish people who are considering the transition to an Insulin Pump or to a Continuous Glucose Monitoring Systems (CGM) to have a look at their website. They have a step-by-step guide on how to get either of these devices. Don't be put off by the references to the NHS because in my experience of getting an insulin pump all the other steps are the same.

I went to this talk because I'm currently trying to get the CGM to add to my Animas Vibe Insulin pump. I wanted to gather information so that I could campaign to get it funded by the HSE.

In Ireland, the HSE will fund this if you have either severe hypo unawareness or nocturnal hypos. If I don't qualify I may be to fund it myself. It costs approximately €600 (for a transmitter & 4 sensors) to start and then approximately €240 per month but I think I can make the sensors last longer than 2 weeks and therefore reduce this cost. It cost a bit more if you don't already have the Animas Vibe because you would have to buy a receiver and also have to buy the package from a different company.

The other people attending this talk wanted to hear from others about how it have benefitted them and how they could get the NHS to fund it better.


How does a CGM benefit people with type 1 diabetes?

  • CGM's have a "Trend" feature which not only gives you a Blood Glucose reading but arrows that indicate which direction our blood glucose is going and how quickly. This feature can help you head off hypos and hypers before they become problematic.
  • A CGM can improve your blood glucose by helping you to narrow the range of your blood glucose results. Basically, smoothing out the rollercoaster of ups & downs.
  • Since the Dexcom 4 came out they prove that the sensors are more reliable and the information is more reliable from the readings. Indeed blood glucose meters have a 20% inaccuracy rate and cgms are now better than that.
  • CGM’s are important because diabetes is not the same every day now matter what. A CGM can help you with all the factors that influence blood glucose that you cannot control.
  • Using a CGM is like having a movie versus a photo. BG is the photo, it gives you the information of that moment in time, where as a CGM/movie gives you a lot more of the story.
  • It eases the anxiety around hypos and gives you the power to head them off.
  • It gives you the ability to aim for tighter targets without increasing the risk of hypos.


What did I learn?

  • I learned about Standard Deviation (or bell curve). I'm ashamed that I'm only learning this now. Standard Deviation shows you how often your blood glucose control is not in range. HbA1c is only an average number and while my current HbA1c is 50 mmol/mol (or 6.7%) my actually readings swing very high and very low. My HbA1c number is telling my that my control is good when it is not. Here is a better explanation of standard deviation and why it's important.
  • I learned that everybody should have access to CGM's. Children especially, should have access!!!
  • I learned that one of the options open to me is to fund the CGM myself, gather data on how much better my control is and then use that data to strengthen my case for HSE funding.

More about the Friends for Life UK next week.

Wednesday, 3 September 2014

Friend for Life/Children with Diabetes, UK 2014 Part 1

School is back! So I can plough in to my summaries from the Friends for Life/Children with Diabetes Conference in Windsor, England, which took place on August 15th to the 17th.



A weekend of type 1 diabetes might not sound like the perfect mini-break to a lot of people but for me it was just what I needed. For a number of years, I've read all these fabulous blogs by people with diabetes and about all the events they go to where they meet so many people like themselves, like me, and where they learn so much about what's going on in the diabetes world.


I've always been a smidge jealous of them. Until a couple of years ago when I discovered one of the largest Diabetes Conferences for PWD in the world also does a United Kingdom version. Finally, I got a chance to join in this last August.


It was a weekend of being surround by people & children with diabetes, whose names, I have no idea of, but I felt like they were friends. A weekend organised to make life less difficult for everybody (carb counts over all the food in the restaurant). A weekend where the medical professionals joined in the fun with us, like they were one of us (and a lot of there were). A weekend where even the talks I thought weren't relevant to me taught me something. 


I have also never, NEVER been in a room with so many insulin pumps in my life!


I'm going to break my summary down into a number of parts, my last count was 5 but I think I can reduce that to 4; for your sake.



Summary of the Conference Part 1.

The first talk we attended, bright and early in the morning was a NHS Update. We didn't think that this one would be relevant to us being under the HSE system and were inconsiderate & lackadaisical in attending (i.e. we were late) but I did regret missing the beginning. Serves me right.


The NHS update was presented by Dr Fiona Campbell, a consultant paediatrician and diabetologist at St James's University Hospital, Leeds. She started the paediatric pump programme in Leeds in October 2002 and 90 children currently attending the paediatric diabetes service use a pump to control their blood glucose levels. 


I had assumed that this presentation would have a negative influence on me and be full of the woes of the NHS and how nobody can do anything about it. Dr. Campbell was quite the opposite; she talked about rocking the boat but being able to stay in it. She gave the impression that any problem that came her way always had a solution. Funding was an obstacle but always possible to get around. She was so refreshing.


Her talk was that of someone who very much wanted to improve diabetes care for young people and someone who doesn't accept that it cannot be done.


She says that the NHS has evolved from a culture where clinicians used to ask "why are kids on pumps?" to now asking "why aren't they on pumps?."



What did I learn?

I learned that the countries Ireland should be looking at to do a better job of providing good diabetes care are Germany and Austria (funnily enough, Germany is the country that paved the way in terms of structured type 1 diabetes education, eg DAFNE and Berger), as they have the best outcomes for Children & young people.

I learned that in that same list of all the countries in the developed world of Diabetes Control in Young People aged under 25, the UK countries (including Northern Ireland) and Ireland rank last to 5th last. Ireland being dead last. I took a photo using my iPad of this slide to try and remember where and what this list was but unfortunately to photo was too blurry.

I learned that maybe Ireland needs to extend the national Paediatric Diabetes Under 5's programme to the Under 12's.

I learned that Ireland should be using more of a network approach to our diabetes care. All of our diabetes clinics should be linked together, communicate with each other, and help each other do better and not compete with each other and resent each other. Instead of every clinic provide a their own service with no standard, they should all have the same service to a high standard (paraphrasing from Dr. Campbell).

I learned that I can chose to be a trouble maker or a rebel. I chose rebel:-)