If you have found this blog, saying Welcome does not really seem appropriate. I know you wish you weren't surfing the internet for diabetes. I felt the same.

A big part of me wishes I were not writing about diabetes, nor did I anticipate to become so opinionated or informed on the subject, but it happened. In 2010, my son was diagnosed with Type 1 Diabetes.

It wasn't really part of the plan… Correction - it was not part of the plan, but it happened. It is not always easy, but I think we are all doing okay, and I hope we continue to do so.

Why the Middle East? I happen to live in Dubai. I don't think that living in the Middle East makes mine or my son's diabetic experience any more unique or challenging than it does elsewhere in the developed world.

I hope you stick around, or read something you like. Feel free to comment and join the conversation, subscribe or follow this blog by liking the Facebook page Diapoint.

Please note: This blog does not give medical advice. I am opinionated, and I share my experiences, but the first rule of diabetes is to follow up with your doctor and/or nurse educator about your care, diagnosis or medication. If you do not have a medical practitioner that is helping you find your way through this crazy world, then do not give up until you find the right one.

Saturday, May 31, 2014

The Global Burden of Diabetes & Rat Heads

Source: The National 29 May 2014

Diabetes has been in the news for the last several days in the UAE.  The results from the Gates Foundation, 2013 Global Burden of Disease Study are out and it is not pretty.  According to an article in The National over 66% of men and 60% of women in the UAE are overweight or obese.  This is huge.

Locals have had one of the highest rates of diabetes in the world for some time now, and are genetically prone to the disease.  Other studies do not single out the UAE, but the entire Gulf region.  Countries such as Qatar, Kuwait and Saudi also have very high incidences of diabetes.  Most of these studies focus on Type 2 as a result of lifestyle.  Something can be done.  We are Type 1, not so lucky, but we can manage.  We manage.

Regardless of Type 1 or 2, there is a lot to be said for healthy eating and exercise.  There is no better cure, or weight management methodology.  For parents out there with children that have the potential to be Type 2, I promise that you do not want this disease in your life.

It is not fair for a child to have to prick themselves many times a day to check their blood sugar and deal with injections, or pump insertion site changes among the many other things.  And if not managed correctly, the potential complications are too awful to consider.

Please brainwash your children early about the benefits of a healthy lifestyle with exercise and balanced eating. Everything in moderation.

I am not perfect, and I cave to the occasional cupcake or back of chips.  We're only human, but we can't be that "human" every day.  I strive to eat healthy and exercise.  I try to make my son even more aware as I know it is in his best interest.

Last week as we drove past one of the most popular names in fast food he said to me, "You know what?  Their chicken nuggets are mdae from rat heads."

I always tell him that place is unhealthy, and I cringe when it shows up at a birthday party.  Outside of our ice cream addition, we do not eat there.  However, I never mentioned rat heads.  Apparently, someone's brother saw it on YouTube, so of course it must be true.

I am always honest, but I didn't debate this one.  I just let that one go and admitted that I was uninformed about the rat heads.  If he believes that fast food is made from rat heads, then so be it.

Action must be taken now.  The world is late to act on this subject.  Cigarettes are heavily taxed or plastered with ugly images of black lungs in some countries.  Perhaps we should consider to do the same with fast food - tax it heavily and find some rat head stickers.

Saturday, May 17, 2014

What Does Diabetes Look Like?

I am still not sure I have the answer to this question.

When I started this blog, and it's Facebook page with the same name (that I am still developing), I knew I needed an image for it.  As a photographer, I was completely stumped.  Give me any other subject, and I will have something in my stock that is relevant or I can come up an image.

Diabetes, left me empty and uninspired.  The people, and especially the children, who deal with it inspire me beyond words, but artistically, it just wasn't doing anything for me. 

I went to Google Images for inspiration.  There is nothing there but images of feet gone bad.  One of the many reasons why it is important to manage your diabetes.  Scary to the point of motivating, but far from inspirational.

I went to my Type 1 son who is an artistic child that loves to sketch and paint.  I asked him what diabetes looks like.  Could he draw a picture of diabetes?  He too thought for several seconds.  "I don't know", he replied.  Not a bad thing I thought - diabetes just is.

Since then, weeks have passed and still nothing.  

Participating in Diabetes Blog Week has started the creative writing juices again, and I created the picture in the previous entry about our diabetic notebook.  But that is only one aspect of diabetes.  It does give some insight into one of the many small, nagging things we do on a daily basis, but it is not the whole picture.

So, what does diabetes look like?  It looks like this.  This is my son, happily scooting along at the last day of our spring break vacation last month.  He is healthy and happy.  He is full of life and everything good in the world.  The only prominent sign of anything diabetic on him is his insulin pump.  

This is diabetes.  This is inspiration.

The Notebook

Catching up on Diabetic Blog Week entries.  Yesterday's topic - Diabetic Life Hacks.

Our diabetic notebook

Our biggest "hack" - which isn't really a hack, or a way to beat any system.  Pen and paper.

We use a notebook to communicate with the school health office.  Of course I stop by every morning and every pick up to discuss where Erin is on the blood sugar scale and anything that they should be aware of. Communication is key to managing any disease.

Despite our discussions, we write everything needed in a notebook.  There are three people that work in the health office and while all are extremely dedicated to caring for the children, there is no way you could ever speak with all three at one time.  What is in the notebook?

  • Morning blood sugar and bolus so everyone can be aware of how much insulin was given.  
  • An itemized list of food in snacks and lunch, and how many carbs are in each item.  This way if everything is not eaten, a nurse can make a good estimate on the bolus.
  • We also share other information, or the nurses use it to remind me if they need more supplies, or there is an upcoming change in the school schedule.  Like that one day where they have early snack that always gives us a little glitch.
I feel fortunate to be in Dubai where we can do this.  I am not sure how open the legal environment of other places would be for this.  Even if I were in a different environment, I would still try to introduce it.

It's a really helpful way to have a quick go to for a brief history of the day without having to open the disease management program in the computer.  And while it may seem a bit manual with so much information in the pump, nurses are taught to write things down and so I think this comes naturally to them.

Our health office likes it so much, they have recommended the notebook system for a newly diagnosed Type 1. For smaller children, you can even make it a fun thing to go pick out what kind of notebook they want to use for their diabetic record at school.  Although I haven't tried it yet, as time goes on, it might just become a good educational tool as my son learns to read and take more control over their disease.

Friday, May 16, 2014

What Goes Up Must Come Down

What is my diabetic mantra?… good question.. I think it changes often.

After experiencing a couple of DKAs, and stubborn insertion sites that have tried my patience, I have often resorted to the What goes up, must come down mantra, and the song Spinning Wheels plays in my head often.  

I don't sing this out loud for my son, nor do I even say it, but it is in my head.  A gentle reminder to my impatient, frustrated internal mind.

I just take a deep breath, and know that eventually, the number will come down to something acceptable… And if it doesn't come down, I pop the analogous blood sugar balloon with an injection to ensure it does.

Another thing I always remind myself is that it could be much, much worse.  As I have 3 friends facing different kinds of cancers right now.  We have Type 1 Diabetes - we've won the lottery.

I experienced this observation early on in my son's diagnosis and it was a life changing day for me.  I wrote about it in the post Perspective

At the end of the day, I don't always have one go to mantra.  I try to take it one day at a time and reach for whatever mantra will get me through that day.

Wednesday, May 14, 2014

What Gets Us Down?

Fortunately, not too much.  Yes, we have a lot of up's and downs - pun and no pun intended.  I am not going to say it is easy.  It is not.

My son was diagnosed at 20 months old, so he does not know a life before diabetes.  In some ways, I feel this is advantageous.  There is no longing for the days of yore when there were no finger checks or sick days.  I recall those 20 months, but do not dwell on it.  I can't.  I have to keep looking forward.  Or at least live in the moment for my son's sake.

It is my job as a parent to teach him to grow up with this disease and manage it.  It is important for him to know that there are no limitations on what he can or cannot do.  If I get depressed about this, it will not help him.

I would say my most challenging times are when we've had too many consecutive highs and we can't always immediately resolve it.  Getting sick, bent cannula, or something else.  I try to learn and move on.

There are also times when he is really sick, and I cannot make it go away.  I wish it were me instead of him. However, again, we cannot dwell on these.  If you do, it will get you down.

This disease is a lifetime.  What gets us down this year will be different next year, and again different in five years.  It will change with different phases of life.

I struggle with diabetes daily, but I try to not let it get me down.  I know my son will face many emotional challenges with it as he grows up, but as his caretaker I feel it is important to stay positive.

The only thing we can do is to try and control it the best we can and not let it control us.  We are so blessed that a diabetic can do everything that a non-diabetic can.

And when I have those moments that I think I want to slip into down mode, I always think there could be worse things to deal with.  Just read the news.  It's more than enough.  Headlines #bringbackourgirls, a mine explosion in Turkey with hundreds dead, the issues in Ukraine, Syria, a French reporter murdered…. That's what gets me down.

Tuesday, May 13, 2014

Diabetic Blog Week - Poetry Tuesday

I am not really a poet, and especially not often at the end of a long day.  I do like the occasional Haiku, so here are a few.  You can read the other poetry shared during the week at Bitter Sweet.

Diabetic son
Forever to be Type One
But wait, perhaps… hope

Early days are tough
So much to learn and then some
All will be okay

Small fingers to prick
How many times a day now?
Small scratch needs band aid

Waiting between checks
Late night wait should be useful
Candy crush kills time

High BS again
It will eventually fall
Don't forget to breathe

Monday, May 12, 2014

Changing the World…Well, Let's Start with Education

I have just learned about Bitter Sweet, Karen Graffeo's blog and her organization of Diabetes Blog Week.  The event runs this week and many bloggers will share their experiences about the same topic every day.  It really is a great idea, so thank you Karen for bringing it together and inspiring these thoughts.

Today's topic: Changing the World.  

Of course there are many things I would like to change in the world, and specifically in the diabetes world.  It is very difficult to follow the wisdom of Ghandi and "Be the change you want to see in the world" if you are a Type 1, or the care taker of a Type 1.  You can manage it, but changing your behavior or eating habits will obviously not cure it.

I am a strong believer that knowledge and information is empowering.  This is one reason why I started this blog.  If my rant can help even one person, then that would hopefully be a positive impact for the better.

One of the things I would like to change, and that I am really passionate about is the knowledge of medical staff about Type 1 diabetes in relation to patient care - quality patient care.  This was one of the topics I discussed in my presentation earlier this month.

We have experienced a few DKAs over the last few years since diagnosis.  While hospitalization and DKA are never great, those experiences could have been better if the nursing and support staff, and in some cases doctors better understood diabetes and how to manage a DKA.

For example, discovering the emergency room doctor on duty looking up how to manage DKA in a medical manual after my son was admitted did not give me great confidence.  I am not saying that healthcare is all bad here.  We have had good experiences, and there are some good doctors and a great deal of effort to improve the care.  However, in a country where the rate of diabetes is one of the most prevalent on earth, I feel pretty passionately that medical staff should know more.  

I later learned this was not just the case here.  Last year we experienced a DKA and hospital visit in another country where healthcare is generally good.  It was frustrating to know the pediatrician on duty was desperately calling around the entire country to find anyone that could help her manage a DKA.  In the end we managed it with her between our physician here by day, and our physician in the US by night (his daytime).

By the end of both of those incidents, I was driving my son's healthcare.  I learned a lot and I am so thankful I have gained that knowledge.  But in the case of the patient that has not worked in healthcare or does not have a medical background, that may not always be possible.  

The only way to make it better now is to arm yourself with information.  Arm your staff with information and once they are knowledgeable and confident discuss how to best do what is needed to provide the best possible care for the patient.

And by all means, as the patient or caretaker, arm yourself with as much information as possible.  Do not be afraid to ask questions.  In my experience, we sometimes know more than we think.  When we share what we know it can change things as well as possibly improve the outcomes and experience for the next patient.

Tuesday, May 6, 2014

The Doctors

Last weekend I was invited to present at an international Type 1 Diabetic Summit in Abu Dhabi.  I opened a panel discussion of patients (children) and their caregivers who shared their experiences.  Some of them were just learning to deal with things, others have been diabetic for some time and overcame amazing obstacles in the past.

This was my first time to do something like this, so needless to say I was a little bit nervous.  I have no issues to get up and make a presentation, but this was the first time I was talking about myself and my experience as the caretaker of a Type 1.

I opened a panel of patients.  This included both caretakers and children.  I pulled from my healthcare background and talked briefly about what makes for a good Type 1 patient experience.  For each item, I had a personal example and then some.

The other patients' stories were amazing and sometimes heartbreaking, but I also saw something that day.  I saw a room full of physicians and practitioners who cared deeply about their work and their patients.  

We often hear about the incompetent ones, or the bad experiences.  I  know I am often quick to share those because, after all, they are stranger than fiction.  

I am fortunate that I have some good doctors in my life supporting us that should not be taken for granite.  Today, within 15 minutes I saw a room full of doctors tear up as one mom shared her story, beam with pride as a young woman told about the prejudices she overcame after diagnosis, and then become passionately angry as another boy shared his experience of a faulty guarantee to be cured with a stem cell transplant. 

It is a side of physicians that we do not often see.  I was reminded that like us, they are human.  I was also reminded that there are great doctors out there that care very deeply about their patients and their well being.