Starter Kit; A Guide for Adults with Type 1 Diabetes

Starter Kit; A Guide for Adults with Type 1 Diabetes.

This is a little project I had been working on since 2010 and I'm thrilled to announce that it's finally HERE! I came across the Starter Kit on an Australian website and thought it was a very valuable and informative document. I showed it to a few of my friends with type 1 who agreed. At this point I realised that there was a lack of educational booklets for people with type 1 diabetes living in Ireland. So I approached Diabetes Ireland, the only organisation for people with diabetes in Ireland and they encouraged me to undertake the project as they have limited resources.

 

I believed that the book would make a big difference to supporting people with type 1 diabetes and I delved in.

 

I, with the help of many Irish health professionals, especially Dr. Anna Clarke, Diabetes Ireland adapted this book from its original format, which was written by the Type 1 Diabetes Network; a group of young adults with type 1 diabetes in Australia. We sincerely thank them for giving their permission to adapt it for Ireland.

 

The Starter Kit is for newly diagnosed adults and contains lots of useful information on how to adjust to life as a person with diabetes, such as a “checklist of stuff to do within the first month after diagnosis” and “10 things we wish someone told us the day we were diagnosed”.

 

Established adults with type 1 diabetes and adolescents who have recently transitioned into the adult world of diabetes will find the Starter Kit useful too.  It includes information about where to find peer support, recommendations for books and websites, and links to all public resources available to a person with diabetes.

 

Everybody will appreciate the Cheat Sheet: this is a two-sided page of information aimed at those without type 1 diabetes.  It is there for you to copy and share with your family and friends and can help you get on with living your life rather than feeling compelled to be the “font of all diabetes knowledge.”

 

I hope that this book will help guide you on the right path to managing your diabetes successfully and open a world of support to you.

 

The Starter Kit is available to download from Diabetes Ireland’s website, however, you can get yourself a hard copy of this book also by contacting them on LoCall 1850 909 909 or by emailing your request to info@diabetes.ie

Diabetes and Pregnancy

This season of RTE’s OperationTransformation  has been focusing on type 2 diabetes in a big way. This is my first time to watch Operation Transformation and I find it a very interesting programme though not why you would think.

I was extremely interested in the piece about how unfit our school aged teenagers are, especially the girls. That was eye opening but when I thought about it not surprising.

However, it’s the feature on Petrice, which aired on Wednesday, 8th February, that inspired be to write this blog entry. Petrice was overweight and always figured that when she decided to start a family she would get in shape first. However, the best laid plans….. And got pregnant un-expectantly. During her pregnancy she developed gestational diabetes.

I have type 1 diabetes and had it before I started my family. My diabetes played a huge factor in deciding if I was going to have a family and really made me focus on what I had to do to prepare my body for developing a healthy baby. I had 10 years to learn as much as I could about diabetes before I started my family – imagine finding out all the scary things about diabetes and pregnancy after the fact! I felt for Petrice and how she was trying to cope with having diabetes and then think about how it was affecting her baby.

I started to think back to how I felt during both of my pregnancies. My first pregnancy went smoothly and resulted in a healthy baby (TG). It was really hard work; constant testing of blood sugars, lots of doctor’s appointments, faxing in by blood glucose diary weekly, accounting for every morsel of carbohydrate, feeding lows all the time and living in fear of the highs.

My second pregnancy happened just after our transatlantic move and my body was stressed, I was a little overweight and I had a two year old to take care of. I still put in all of the work and thankfully the result was another healthy (if not very large) baby (TG again).

Each time I was pregnant I had the same anxiety but tried to push it to the back of my mind and focus on nurturing a healthy baby. It’s amazing how this growing life makes you take better care of yourself and work twice as hard at managing your diabetes well without grumbling.

It’s like competing in a long distance race; you just want to get over the finish line. Your first question in the delivery room is not “Is it a boy or a girl?” but “Is everything where it should be and does s/he look healthy?”

Diabetes never lets you take a healthy baby for granted.

Horror Stories vs. Happy Endings

Media attention is a good way to create more awareness about diabetes in the general public. So when I learned that RTE 1 was airing a programme dedicated to the disease I thought “great!”

I quickly changed my mind when I read the programme synopsis in advance of viewing it. We were going to hear the stories of 3 people, one of whom had passed away since filming from diabetes complications, the second was visually impaired and had limb amputations and the third was only a couple of years diagnosed.

I thought to myself “it’s going to be grim and depressing” and decided I was going to be disappointed with the programme. I really didn’t want to watch other peoples’ misery and think that it could one day be me.

Now that I have watched it and heard all of the stories, I heard the message. To me it was loud and clear, “take care of your diabetes or else you will end up like those in the programme”.

I asked myself would I have heard that message from someone who seems to have good management of their diabetes, who didn’t have any of the long term complications, or was young, fit and vibrant?

I think the answer is no.

So, yes we would like to see more inspirational people with diabetes who have good stories to tell us but we also need reminders of what can happen if we choose to ignore our diabetes.

Getting the New Technology & Treatments for Diabetes.

So you’ve heard about the benefits of the insulin pump and continuous glucose monitors and sensors. And you’re thinking “I might just get my diabetes under control if I have one of those”

How do I get one? Well the answer is that it’s not as easy as just deciding to get one.

In Ireland, people with diabetes get all of their medicines and medical supplies, relating to diabetes for free on the Long Term Illness Scheme, which is fantastic! However, when a new treatment comes on the market such as the insulin pump which costs €5,000 and then about €100 plus per month for the supplies, not to mention what it costs to have specially trained medical staff on call 24/7 to support the pump user, the people who foot the bill start to ask questions. Understandable!

So, the most common replies to questions about the pump are that there are problems with funding the staff needed to provide pump support. (I might add here that the suppliers of the pump actually provide the patient training.) Then, you will be told that the HSE won’t approve the funding for the pump.

It is a very savvy customer/patient who will pursue this quest after that.

So what happens if you want something like a glucose sensor? And your medical team just won’t discuss it with you. The supplier, obviously, wants to give it to you; you’ve done your research and decided that you want it. Surely, there is a way that you can overcome these problems.

Maybe it’s time for the Health Insurance companies to join this debate. Maybe in order for them to prevent us from claiming huge medical bills for kidney disease, limb amputation, hearts bypass surgeries, etc., they should be working with Roche, Abbott, Animas, Medtronic, etc. and helping people with diabetes manage our disease better?

I get so mad at my Doctor

I recently had a conversation with my consultant endocrinologist’s secretary that left me so annoyed, I had to wait until I calmed down to write about it.

On Thursday, 27 May 2010, I received a phone call from my endocrinologist’s office. It went something very close to this;

Secretary; “Gráinne, I’m calling with your fasting bloods results.”
Me: “my what? The bloods weren’t fasting- do you mean my HbA1c?”
Secretary: Your Hb mm… yes. The result is 7.0 mmols and the Dr. says you have to do better.
Me: What!

The conversation continued for a couple more minutes and I remained polite and civil because I knew the secretary was just doing what she was asked to do - blindly.

Firstly, I was so upset that I really didn’t know how best to react. How do you react to being told that “you have to do better”, especially when you think you’re doing everything you possibly can to begin with. Being told this made me feel like having diabetes is all my fault, and that I’m clearly not managing it very well so again that must be all my fault too. It also made me want to head straight for that chocolate tin or the pint of ice cream.

Secondly, if I asked the secretary how I should do better, I doubt he/she would have advice and instructions about my diabetes management should come directly from my endocrinologist and not from someone who isn't qualified to answer follow up questions. Afterall, that's what I'm paying for (yes this is the private health system in Ireland I'm talking about).

And thirdly, how am I supposed to do better with a one sentence instruction? This doctor gives no specific instruction other than to have lots of bananas (???). Dr. X doesn’t talk about carb counting, sliding scales, insulin to carb ratios, testing or anything useful. I need a conversation on how I can do better that offers me options and realistic goals.

I think it’s time that I said to my endocrinologist that he/she should do better – I am paying €100 per visit and maybe it’s time it was earned. Maybe, it’s time that she trained her staff appropriately too. And while I’m at it, maybe it’s time she acquired some better time management skills instead of taking patient phone calls during consultations.

I should give my hubby a break and direct my rantings and ravings at the person responsible for them.

Update - I did leave this endocrinologist shortly afterwards for one who is so much better and when the secretary called one last time with my lab results with the same message I did reply “yes, it’s not good enough”. She then asked if I wanted to schedule my next appointment, I said “No, thanks!” and hung up :-) It felt FANTASTIC!!!

Why Diabetes? Why me?

When I was diagnosed with diabetes, it was 1993 and I was a 20 years old student; living the typical student life. That all changed with diabetes. For a very long time I only knew what I absolutely needed to know about diabetes to survive. I fought it but not in a good way. My attitude was that diabetes was not going to get in my way! My friends and family would ask about it and how I was getting on, I replied “fine”. I had no idea of how I was doing, health wise, my medical team didn’t talk my language, I didn’t asked questions, and I didn’t want to be there.

What changed? I met my now husband who had decided I was worth having around for a long time, and convinced me I was worth it.

I started internet searching for information on diabetes to give to him and I started learning about diabetes for myself. Things like how exercise affects my blood sugars, about how insulin works once I inject and how food affects that process and lots, lots more. I even met another person who had type 1 diabetes who I couldn't push away because she was the wife of my husband’s friend.

Through this friendship, I realised how important it was for me to have people my own age around me who knew what having diabetes felt like.

I’ve come a long way since then. I started a support group for people with type 1 diabetes in my home town in 2007 and my diabetes family has grown quite a bit. People call me with their stories and I listen, hoping that in some way I'm helping them. I wished that I had had someone I could’ve talk to in the beginning but knowledge about diabetes was poor back then.

Now, I want to inspire people to go out in search of the knowledge they need to live a great life with diabetes. I want to encourage people to start reading the numerous books on the subject and to find other people with diabetes on the internet or in their area. More and more supports groups are forming around the country and if you don’t have one in your town yet then find us on the internet. We’re here!