Blood Sugar Trampoline

Empowerment and Diabetes – My Journey

Last May, I was asked by the organisers of the Future Health Summit to give a presentation on how I became an empowered person with diabetes. Some friends asked if I could blog about it.

The reason for my topic choice was because the theme of the conference was Empowering the Patient, Information, Choice & Accountability and I decided to focus on Empowering the Patient element for my presentation. I feel like I am one, that diabetes does not have power over me, I have a lot of power over it.

The journey towards being an empowered patient didn’t happen overnight, for me. I would like to think that a person with diabetes diagnosed today would find empowerment much quicker than I did. But the two core elements that were pivotal in my journey didn’t really exist when I was diagnosed. Those elements were Diabetes Education & Support.

Obviously my Journey Began with diagnosis 23 years ago – 1993. Diabetes Education was extremely basic in Ireland back then, if it existed at all!

My diabetes management involved;

  • – Injecting a fixed amount of insulin twice every day
  • – Eating the same amount of food at the same time every day
  • – Checking Blood Glucose levels just twice every day
  • – And I was taught How to recognise & treat a hypo

For those first 6 years I felt like I blindly coasted through my diabetes care. I did what I was asked to but I had no idea why I was doing any of it, except to stay alive.

So what changed? What prompted me to get on the bus to empowerment?

This is going to sound corny but it was love. In 1999, I met this bloke.

Phil

This is Phil. We weren’t going out very long but he already had notions about our relationship and we weren’t going out for very long when he asked me for books or leaflets where he could learn more about helping me manage my diabetes. I was stunned! And for three reasons;

  • – He was the first person I met who didn’t expect me to educate him on something I barely knew myself.
  • – That the relationship was moving a bit faster than I had thought and
  • – that I had nothing, absolutely nothing to give him when it came to information.

What I did have was access to the internet at work. So the next day, during my lunch break, I “AltaVista’d” type 1 diabetes. If you don’t know what AltaVista is, google it! 😀

I couldn’t believe what I found – the list of websites containing information was so long. I found all of these organisations with websites that had tonnes of practical information such as the Joslin Diabetes Centre and the world’s leading research organisation, the JRDF. I had never heard of these places before.

I started reading all of this information before handing it over to Phil and it got me thinking that there might be a better way to live with diabetes. But that thinking got shelved for a while as this journey is not an express route and it required a couple of transfers to reach my destination.

1st Transfer–Diabetes Education

You’ll be happy to know that I, very quickly, realised Phil was a keeper and by 2003, we had been married a couple of years, had moved to US and we were thinking about starting a family. As soon as my endocrinologist heard this he marched me off to a dietitian to learn about counting carbohydrates, insulin dose adjustment and sliding scales.
Family 1family 2

I had been diagnosed 10 years by the time I found diabetes education which now seems too long. But this knowledge gave me some of the control over this thing called diabetes for the first time. And I felt supported; supported by my diabetes team and supported with knowledge. I didn’t realised it then but my diabetes team in the US was the first I experience of patient centred care.

2nd Transfer–Diabetes Peer Support

The 2nd transfer on my journey towards empowerment was finding peer support.

By 2007, we had moved back to Ireland, had our second baby and I was increasingly frustrated and unhappy with the diabetes care I was receiving. In June of that year I found myself at my lowest point after leaving the most humiliating diabetes appointment I’ve ever experienced. But it propelled me into action. I knew there had to be someone out there who would make me feel listened to.

I went home and remembered a recent newspaper article about a new branch of Diabetes Ireland being set up in Clare. I called the number in the piece and the lady who answered was a fellow person with type 1 diabetes. What are the odds? She had had her second baby around the same time as I had and we were both new to Clare. We instantly connected and during the course of that conversation we realised that we both wanted to meet more people like us and to do this was to set up diabetes support groups.

By the end of 2007, we had diabetes support groups and they continue to be a source of information, motivation and inspiration for me. And they, with some information from Diabetes Ireland helped me find a diabetes team that works amazing for me.

support group

Destination Reached – Person Empowered

This is where I feel my journey towards empowerment was completed. I had reached my destination.

Yes, I took the scenic route to being an empowered person with diabetes. An empowered person with diabetes who can drive her own diabetes. And I became that by finding two very simple, very basic diabetes resources but yet they are not accessible to everyone with diabetes in Ireland.

The first necessity is Diabetes education is as important as giving someone who wants to drive a car lesson and some theory. Would you really put a beginner in the driving seat of a car without it? And not just structured diabetes Education, like the university style of lectures. This education has to be an ongoing 2-way conversational style of learning, where a person with diabetes can grow in confidence, drive their own diabetes and the instructor takes more of a back seat each time.

The second is Diabetes Support and for me that comes from three sources;

  • At home – I may be the person with diabetes but my whole family lives with it. The more supported I am at home the more successful I will be in my diabetes management.
  • My Diabetes team – My journey has taught me that I need a health care team who listens to me, acknowledges all that I do to manage my care and doesn’t just focus my failings. A team that continues to teach me and a team that continues to learn.
  • My diabetes Peers – the most undervalued, underused resource available for people with diabetes today. Who else knows what it’s like to live with diabetes than other people with it. We learn so much from sharing our experiences, so much that can’t be taught in a hospital appointment.

So while my journey towards empowerment has been completed, my life with diabetes journey still continues. And I hope to continue that journey for many, many decades.

What is Diabetes

Chances are that if you found my website you already know a little something about diabetes. But, you might be like me and always want to learn more. And there’s ALWAYS is more to learn about diabetes. In this page/post I will attempt to give you my interpretation of diabetes. But I will also refer to medical people who can get more technical. I will also talk about the symptoms of diabetes, the risk factors and different types of diabetes.

Diabetes is not easy to explain and it usually requires more than a short sentence, which means people’s eyes glaze over and you lose them before you get to the “good” stuff. But you still have to try right.

It’s important for all of us, people with diabetes, to not only explain our type correctly but when we are asked about other types that we support those people well too.

Let’s start with the basics. Most of the medical definitions I’ve used here came from the Canadian Diabetes Association’s website.diabetes What is-1270346

Diabetes is;

Diabetes is a lifelong, chronic, and sometimes fatal disease about the struggle to manage glucose levels in your bloodstream. The body either cannot produce insulin or cannot properly use the insulin it produces.

What do we need insulin?

Insulin is a hormone that turns the glucose (sugar) in our blood into energy for all of our cells to function. The glucose comes from a couple of sources, mostly from foods known as carbohydrates and a stored supply in our liver. Diabetes leads to high blood sugar levels, which can damage organs, blood vessels and nerves – every where our blood goes means that’s an area excess sugar can damage. – See more here.

There are a bunch of different types of diabetes.

Type 1 Diabetes

My (non scientific, non-medical) description; Type 1 diabetes happens when, for some unknown reason, our immune system goes “terminator” on our insulin making cells and wipes them all out. My body now has no way to convert the food I eat, in particular the good stuff that comes in the form of carbohydrates, into fuel for my body to exist. Or the glucose that is constantly being released from my liver to keep energy levels up in between meals.

About five to 10% of people with diabetes have type 1 diabetes and it can happen at any age. Type 1 diabetes generally develops in childhood or adolescence, but can develop in adulthood. And type 1 diabetes is always treated with insulin.”

For the more medical explanation of type 1 diabetes click here. “The risk factors for type 1 diabetes are still being researched. However, having a family member with type 1 diabetes slightly increases the risk of developing the disease. Environmental factors and exposure to some viral infections have also been linked to the risk of developing type 1 diabetes.” Source – International Diabetes Federation (IDF)

Symptoms of Type 1 Diabetes:

The symptoms of type 1 diabetes can develop very quickly (over a few days or weeks), particularly in children.

The main symptoms of type 1 diabetes are the 4T’s :

  • Excessive  Thirst
  • Excessive trips to the Toilet
  • Excessive Tiredness
  • Thin; losing an excessive amount of weight

Other symptoms can be vomiting or heavy, deep breathing can also occur at a later stage. This is a dangerous sign and requires immediate admission to hospital for treatment. For more information on the symptoms of type 1 diabetes, click here.

LADA (latent autoimmune diabetes in adults) or Type 1.5

My (non scientific, non-medical) description; LADA is very much like type 1 diabetes but it tends to occur in older adults. It is very often mistaken for type 2 diabetes. It’s a slower destruction of the insulin making cells. Maybe it’s something to do with the “Terminator” being older and slower moving!?! So the symptoms present over a longer period than they would for a person with type 1 diabetes.

LADA is also known as slow-onset type 1 diabetes and type 1.5 diabetes. Like other forms of type 1 diabetes, people with LADA require insulin injections to normalise their blood glucose levels.

For the more medical explanation of LADA click hereSymptoms are very similar to those of type 1 diabetes.

Type 2 Diabetes

My (non scientific, non-medical) description; Type 2 diabetes happens when your insulin has developed a dementia. It’s old and tired and not quite sure what it’s suppose to do. So, sometimes it works and sometimes it has to put twice as much effort in to work. To me, it’s like the insulin has dementia – sometimes it’s sharp and works well and other times it just can’t figure out what to do.

In general, people who develop type 2 diabetes are older but this isn’t always the case. it’s the most common type of diabetes.

The treatment options for type 2 diabetes include managing physical activity and meal planning, or may also require medications and/or insulin to control blood sugar more effectively. It can be a series of trial and error to find the right treatment plan for a person with type 2 diabetes.

For the more medical explanation of type 2 diabetes click here.

Symptoms of Type 2 Diabetes:

The symptoms of type 2 diabetes can be very slow to present and often you can have type 2 diabetes for a number of years before it is picked up.

The most common symptoms of type 2 diabetes include:

  • excessive thirst
  • frequent or increased urination, especially at night
  • excessive hunger
  • fatigue
  • blurry vision
  • sores or cuts that won’t heal

Risk Factors for Type 2 Diabetes (from IDF):

There are 10, that’s TEN risk factors for type 2 diabetes. Not just the two/three that we ALWAYS hear about.

  • Family history of diabetes
  • Increasing age
  • High blood pressure
  • Ethnicity
  • Impaired glucose tolerance (IGT)*
  • Overweight
  • Unhealthy diet
  • Physical inactivity
  • History of gestational diabetes
  • Poor nutrition during pregnancy

Impaired glucose tolerance (IGT) is a category of higher than normal blood glucose, but below the threshold for diagnosing diabetes.

Gestational Diabetes

The other description from IDFis a form of diabetes consisting of high blood glucose levels during pregnancy. It develops in one in 25 pregnancies worldwide and is associated with complications to both mother and baby. GDM usually disappears after pregnancy but women with GDM and their children are at an increased risk of developing type 2 diabetes later in life.

Approximately half of women with a history of GDM go on to develop type 2 diabetes within five to ten years after delivery.

Other Types.

There are other, much rarer forms of diabetes that are monogenic, meaning a change in only one gene is responsible for the condition. There are two types of conditions in this category: Maturity Onset Diabetes of the Young  (MODY) and Neonatal Diabetes Mellitus (NDM).

For these types of diabetes I have to call on the words of experts because I’m not very familiar with them and don’t feel comfortable giving a description of something I don’t know much about.

MODY Maturity Onset Diabetes of the Young

I would love to take credit for this explanation of MODY but I couldn’t do any better than Morag (Twitter: @SparklyRedShoes) on GBDOC MODY happens when there is a mutation of a gene and is most often hereditary. It very often is confused as type 2 diabetes in a young person.

“MODY is diagnosed by genetic testing. It may be worth testing for MODY when a person with diabetes doesn’t fit the profile of the more usual types. For example, somebody who actually has MODY may not require as much insulin as most people with Type 1 (and will have measurable C-peptide), even long after the honeymoon period, but they will generally not be of the age and weight you might expect to see for Type 2. In fact, at diagnosis, people with MODY are often young, slim and active. ”

Being genetic, it runs strongly in families; if one parent has it, then the chances of a child inheriting the gene are 50/50. People with a MODY gene generally develop diabetes as young adults, and most are diagnosed by age 45.

For the more medical explanation of type 2 diabetes click here.

The key features of MODY are;

  • Being diagnosed with diabetes under the age of 25.
  • Having a parent with diabetes, with diabetes in two or more generations.
  • Not necessarily needing insulin.

NDM Neonatal Diabetes Mellitus

baby1-499976_1920From Diabetes UK; Neonatal diabetes is a form of diabetes that is diagnosed under the age of nine months. It’s a different type of diabetes than the more common Type 1 diabetes as it’s not an autoimmune condition (where the body has destroyed its insulin producing cells). Like MODY it’s a genetic mutation.

 The key features of neonatal diabetes are:

  • Neonatal diabetes is caused by a change in a gene which affects insulin production. This means that levels of blood glucose (sugar) in the body rise very high.
  • The main feature of neonatal diabetes is being diagnosed with diabetes under the age of 6 months, and this is where it’s different from Type 1, as Type 1 doesn’t affect anyone under 6 months.
  • As well as this, about 20 per cent of people with neonatal diabetes also have some developmental delay (eg muscle weakness, learning difficulties) and epilepsy.
  • Neonatal diabetes is very rare, currently there are less than 100 people diagnosed with it in the UK.
  • There are two types of neonatal diabetes – transient and permanent. As the name suggests, transient neonatal diabetes doesn’t last forever and usually resolves before the age of 12 months. But it usually recurs later on in life, generally during the teenage years.  It accounts for 50-60 per cent of all cases. Permanent neonatal diabetes as you might expect, lasts forever and accounts for 40-50 per cent of all cases.
  • Around 50 % of people with neonatal diabetes don’t need insulin and can be treated with a tablet called Glibenclamide instead. These people have a change in the KCNJ11 or ABCC8 gene and need higher doses of Glibenclamide than would be used to treat type 2 diabetes. As well as controlling blood glucose levels, Glibenclamide can also improve the symptoms of developmental delay. It’s important to know if you have/your child has neonatal diabetes to make sure you’re/they’re getting the right treatment and advice (eg stopping insulin).
  • Genetic testing for neonatal diabetes is offered free of charge for all people diagnosed with diabetes before 9 months of age. Confirming the diagnosis by molecular genetic testing is essential before considering any change to treatment.
  • More information about neonatal diabetes can be found here.

So if you were/your child was diagnosed with diabetes before you/they were 6 months old, ask your diabetes team for a test for neonatal diabetes. Your team can take a blood sample and send it to the Peninsula Medical School based at the Royal Devon and Exeter Hospital for analysis. The test is free. Go to www.diabetesgenes.org. This site will also tell your doctor how to take your blood and send it to the team at Exeter.

Diabetes Summit Review

I had so much to write about from the Future Health Summit on Friday 27th May last that I had to divide it into two post.

Disclaimer: The organisers of this conference reimbursed me for my travel expenses to attend as a patient speaker. But all opinions are my own.

Here is my review of the Diabetes Summit Event which was chaired by Dr. Ronan Canavan, co-chaired by Anna Clarke from Diabetes Ireland with our panel being chaired by Dr. Eva Orsmond. This was the event that I spoke at. I was last up on the agenda. I have to tell ye, I think I have the bug. Even though, I seriously thought I would need medical assistance because my heart was pounding so hard while I was waiting to go up, once I got up there – I had a ball!

The summit began with Dr. Ronan Canavan, outgoing Clinical lead of the National Clinical Programme for Diabetes and Consultant Endocrinologist, and an overview of what the Diabetes National Clinical Programme has accomplished under his leadership. This included the National Diabetes Podiatry Programme, the establishment of The Diabetic Retina Screening Service, the Type 2 Diabetes Cycle of Care, which we are seeing happening now, the publication of the Paediatric Model of Care for all Children with diabetes and the forthcoming Model of Care document for Adults with diabetes.

Professor Gerald Tomkin gave a wonderful presentation about something very medical but did not fail to be extremely amusing. Actually I giggled a lot! I should add that this conference was primarily attended by healthcare professionals and patients were in the minority.

Dr Neil Black, talked about the reforms that his team have made in Diabetes West, which is not Ireland West but Northern Ireland west.  They have made some very seemingly small but significant changes. They’re approach is to identify the problems in the diabetes service from the patient’s perspective. Some changes were easy, such as changing the name of the diabetes clinic to diabetes support service – it sounds so much more caring. They have also streamlined the pathway to receiving care so that the people who need more support have more access and the people who are in a good place can step back until they need a check in.

2016-05-27 14.53.45

Prof Philip Home-Professor of Diabetes Medicine, Newcastle University. Former Chairman of the International Diabetes Federation (Europe). In 2009 he was Programme Chair for the IDF World Diabetes Congress in Montreal spoke about medications for lowering blood glucose. Again, another well seasoned presenter and charming gentleman but well above my head. 

Dr Richard Lee Kin-Specialist Periodontist and founder of the Mint Clinic in Adelaide Rd., Dublin 2, pointed out why dental hygiene is so important for people with diabetes. He also inform us that people with diabetes can get two dental exams for free every year. I’m hoping to have more information on this about where you can download the form to apply in advance, if you are a PAYE contributor. It’s more straightforward if you have a medical card, see more information from Citizen’s Information.

Then there was me and my scenic journey to becoming an empowered patient, or as I would rather put it “my own best advocate”.

Once everyone has presented, we concluded the summit with a panel discussion where Dr. Eva Orsmond and members of the audience had to opportunity to question us. Things got a little tense for a moment or two during this questioning, but thanks to Anna Clarke the tension was alleviated.

All in all it was not your average day in the office. It was lively, informative and I’m very glad I had the opportunity to participate and attend.

The Great Sugar Confusion

Are you as tired as I am of hearing about sugar and all its evils?

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

The Great Sugar Confusion was originally posted on the 9th October 2013. I have taken a different spin on it this time.

Everyday, it seems like there’s another “sugar scare” story!

And yes, I know that too much sugar is not good for us, any of us but I get so confused when I try to understand what these articles are trying to tell us and how to explain it to someone else.

I know that these pieces are written by well intentioned people, even qualified medical professionals,  who are trying to educate the masses but everytime I see one of these articles I get “irked” because I feel that the healthier foods are being branded as “bad” too.

People with diabetes, despite the truth, are taught that sugar = poison. I feel this is changing in the diabetes community but the rest of the world will continue to be stuck in this time warp for a long time to come.

So, if someone shows you an image like this ;  Sugar httpwww.bbc.co.ukscience021843942

and you have diabetes and are not very carb-aware, you might assume that you can’t eat any of these three items.

For me, I get confused because I don’t know if it’s representative of the sugar that is added when the food is being created or if that’s what the carbohydrate becomes when digested into glucose. I don’t know if my reaction should be “Gosh, I didn’t know that!” Or “Yes, I knew that”. What, just what are you trying to tell me????

Educating the masses about the complexities of our food and how it affects us is a huge challenge. So many different approaches have been tried but haven’t really succeeded.

However, I do think that people with diabetes, especially those of us who count carbs to match insulin, have a leg up on this one. Learning to read a food label has been the best tool for me to know exactly what I’m eating, it’s even better if there are very few ingredients in it or if my food is cooked from scratch. The closer the food is to the farm the better it is. But it’s also a tool I HAVE to rely on to stay healthy and not let diabetes take me down.

It’s probably not very realistic to expect all others to scrutinise their food labels as I do. But it might be realistic to teach this in our primary or secondary schools along with how our digestive systems work? I mean that stuff has stayed with me.

This is what I remember from my 2nd year biology class.

  • – starch + sugar = Carb
  • – bite, chew-chew-swallow, swish-swoosh in the stomach
  • – presto = glucose.
  • –  Glucose floats around in the blood, gets absorbed by cells = energy.
  • –  Leftover glucose get stored for a while then gets turned into fat.
  • –  Done! A+ for me…. surely?

Molecular Structure Table Sugar

For those of you who would like a bit more science, have a look at this really good website; basic biology of digesting carbohydrates.

The Clare branch of Diabetes Ireland is hosting a Diabetes Education event will feature a dietitian who will talk about “being sugar smart”, on Tuesday, May 17th in The Temple Gate Hotel at 8pm. It’s going to make for a very interesting evening and hopefully be enlightening.

Welcome to Blood Sugar Trampoline

A combination of my personal blog about living with type 1 diabetes in Ireland and sharing information I collect along the way.

I feel that living with type 1 diabetes is sometimes like being on a trampoline, except you can never get off. It doesn’t take long for us to get tired of all that bouncing. It’s not any fun.

Here, we can bounce together, keep each other steady, and cheer each other on when we get tired and want to get off the trampoline.

#IWishPeopleKnewThatDiabetes….

Some of you may have come across the Hashtag #IWishPeopleKnewThatDiabetes….. over the last year, which is the brainchild of Diabetesaliciouness blogger, Kelly Kunik.

I met the superwoman herself last July at the MasterLab Diabetes Advocates conference. On that first morning, as I took a deep breath and joined a table of strangers. I know, I'm a very grown-up woman but I still have to force strongly encourage myself to do these things because I know I'll regret it if I don't.

Anyway, I did not recognise anyone but as soon as the ladies started conversing and using their first names, I started to connect the "who" to the "blog" and figured out that the girl sitting right beside me was Kelly.

Kelly has lived with type 1 since she was 8 years old (that's 38 years), and comes from a long line of direct relatives with type 1 diabetes, including her sister who died in 1991 from complications at the age of 33. Kelly gave an indept interview in August to Diabetes Mine in which you can read lots more about her and why she does what she does.

The #IWishPeopleKnewThatDiabetes hashtag and the #IWishPeopleKnewThatDiabetes Day, (22nd April 2015), were inspired by 3rd grade teacher, Kyle Schwartz and her #Iwishmyteacherknewthat hashtag, which was heartbreaking.

Photo cortesy of DiabetesMine.com

Kelly says that "This day is about people living with diabetes taking to twitter and using the hashtag in unison for a 24 hours period to express the good, the bad and the diabetesalicious of it all."

The #hashtag and day took on a life of their own with over 16 countries participating and generating over 17 million twitter impressions to date.

The IWishPeopleKnewThatDiabetes hashtag has now become an initiative, a movement and a call to action where people can express themselves past the 140 character limit and in various multimedia formats. Kelly launched the "Iwishpeopleknewthatdiabetes.org" website last November. She (and I) encourages everybody to visit the website and submit your own "what you wished people knew about diabetes". You can also read some guest posts from rock stars in the Diabetes Community and some totally-not-a-rock-star-or-even-close people's guest posts (i.e. yours truly. I was so honoured that she asked!!!)

IWishPeopleKnewThatDiabetes.org is well worth a visit.

 

Diabetes Complications are Not a Sign of Failure

The complications of diabetes are real and people are living with them. People are also living in fear of them. Myself included. I am actively trying to overcome this fear because if I do end up with complications I don't want to feel like it is the end of my life. Or that I failed to manage my diabetes well enough. And I certainly don't want to be made to feel that it's my fault.

I don't believe just because I am doing everything in my power to manage my diabetes that I will be spared. I believe that if I have type 1 diabetes I still have the risk of developing complications. I strive to keep that percentage of risk low but it will never be zero.

I will not stop trying!

Image from http://www.coolnsmart.com/failure_quotes/

So, when a friend of mine, who has lived more than 50 years with type 1 diabetes and who lives with a number of the complications of diabetes, comes to our T1D meet ups and people imply she didn't take of herself, I get a little "upset"!

My friend has survived taking care of her diabetes when there was no such thing as a glucose meter! Imagine never know what your blood sugar was?!?

She has survived during a time when the phrase "carb counting" might as well have been a foreign language in Ireland. It didn't exist!

We also did not have Rapid Acting Insulins until the late 1990's. So, even if we did practice carb counting, it wouldn't have been much good to us. Sure, we could do a certain amount of carb counting on the insulins we took only twice a day but we couldn't fine tune it like we can today.

We also did not know that the tighter your diabetes control, the less likely you were to be at risk of getting diabetes complications. This research was only published in 1993 as the DCCT Trials.

93 years ago we died! Today, we have so many tools, technology and instant access to research that people with type 1 diabetes, who have been told for decades what they can't do are breaking all of those barriers.

So I ask you? Is surviving 50 years with type 1 diabetes and living with complications really not taking care of yourself?

My friends who live with diabetes complications may even say themselves, that they didn't do as much as they should have to take care of their diabetes. And I say you did the very best that you, and everybody else, knew how.

I am so lucky and proud to have friends like Deniabetic, who are helping me overcome my fears.

The Great “Sugar” Confusion

I thought I knew a lot about food and in particular carbohydrates and sugar. However, I attended a diabetes support group recently that sent my head spinning in confusion. 

You see, I always thought that the word “carbohydrate” referred to the group of foods that have the most influence on blood sugars and that “sugary” foods would be part of that group. So when a gentleman remarked that white bread was full of sugar my head slowly exploded.

Inside my head I was asking so many questions;
– do you mean sugar as in table sugar and that it’s an ingredient of bread?
– or do you mean in comparison to wheat/brown bread?
– are you talking about carbohydrate and not sugar?
– are people confusing those two words?
– when dietitians talk about sugar; are they talking about sugary foods, table sugar or a subgroup of carbohydrates?

I started second guessing my knowledge and I couldn’t respond to the comment which was then followed with other remarks about other foods, such as bananas that are also full of “sugar”. Help! But of course none of us had the knowledge to sort all of this confusion out.

So off I went to Google university to try and figure out my confusion and find out once and for all what the word “sugar” actually means. I’m still not very wise but my opinion is that the word is being used in all sorts of contexts and that most of the other general public are confused too.

There’s sugar as in table sugar, complex sugar or carb which is a type of carb (obviously) and the other one which is simple sugar/carb, sugars as in my blood sugars.

We have invited a dietitian to our next support group meeting and I think it’s going to make for a very interesting evening and hopefully be enlightening.

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.

I get so mad at my Doctor….

I recently had a conversation with my consultant's secretary that left me so annoyed, I had to wait until I calmed down to write about it. I'm sharing this experience because the medical professionals can very often have a negative impact on a person with diabetes and we need to rise above this temptation to "lash out" at them by hurting ourselves.

So on Thursday, 27 May 2010, I received a phone call from the secretary at my endocrinologist’s office. And it went something very close to this;

Secretary; “Grainne, 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 and the Dr. says you have to do better.
Me: What!

The conversation continued for a couple more minutes and I was polite and civil because I knew the secretary was just doing what she was asked to do – blindly.
Firstly, how do you react to being told that “you have to do better”, when you think you’re doing everything you possibly can to begin with. Being told this makes 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, why I ask the secretary how I should do better, what do you think her reply will be. Yes, 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 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 she should do better – I am paying her €100 per visit and maybe it’s time she earned it. 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.

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