Welcome?

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, April 26, 2014

And How is He Handling It?

And so the obvious question, "How is my son handling it all?"

I am often amazed at how well he handles it.  However, he does not know anything else.  He was diagnosed at 20-months old, so he does not have the challenge that many children do of remembering what life was like before diabetes.

Yes, he does have his moments with it, and he has started to realize that life is unfair and sometimes asks the question why him.  This is typically when we are about to change an insertion site which requires a jab with a pretty big needle (about one inch long) to place a canulla under his skin to deliver insulin from an insulin pump.

We usually put the insertion in his bum, but sometimes the tissue has to rest and we need to put the site in his abdomen.  This is not easy.  I don't tell him to get over it, or dismiss it.  I let him be angry with it when he needs to. I can't blame him, I would also be terrified to take this needle in the abdomen.

I am the one who changes his insertion site every two to three days, and he will later have to do it himself.  I sometimes wonder about the long term effects that this will have on our relationship.  He understands he needs it to keep him healthy, but I am the person that convinces him to comply, and I am the one that inserts the needle.  Fortunately, he is okay with changing the insertion site on most days.

Checking his blood sugar is a regular thing that we do at least six times a day.  Sometimes he is impatient with it if he feels he might miss out on something, but pricking his finger is not an issue.  Since the third day of his diagnosis five years ago when he was hospitalized for DKA he has not complained.

The nurse came in to check his blood sugar the morning we were going to be discharged.  When she asked for his finger, my sweet, 20-month old boy took a deep breath, extended his arm and pointed his finger out.  The memory of how a boy who was not yet two years old found such courage is still very vivid.  From that day forward he has never once flinched when we check his finger.

Diabetes is not only about checking your blood sugar regularly, but this is a big part of it.  My biggest hope is that since he has been so accepting and has done this well so far, he will continue to take on the lifetime of challenges he will face with this disease head on.


Thursday, April 17, 2014

Why a Diabetic Blog?

There are soooo many diabetic resources and forums on the internet, so why a blog?  Why this blog?

I did not know much about Type 1 when my son was first diagnosed, so I immediately went to learn more on the internet.  What I found was astounding.

There are many great sites like JDRF, and they also have forums where diabetics and parents of diabetics can ask questions and share experiences.  There are many supportive, knowledgable parents there to give advice.

I read those boards for a few days, and then I had to stop.  If you are in the early days of diagnosis, or even in the first year, it can feel like information overload.

I also found myself becoming angry as I read the forums.  Angry that every day I would see at least two or three more parents coming to the forum with a newly diagnosed child.  Like me, they were scared and sad.  However, I was also upset to learn there were many other children in the world that would have to endure this disease. Seeing it on a forum where a few hundred or so sought out advice could only mean this number was multiplied several times over.

I did not want a cure.  I wanted a solution.  I wanted prevention, and I wanted eradication. Sure, if my son was cured I would be happy beyond words, but after a few days reviewing the forum, what I really wanted was to never again read the phrase my child has just been diagnosed with Type 1.

I still visit those forums sometimes, but through this blog, I will share my experiences and thoughts.  They are my thoughts, in one place.  On a forum, I feel I have to be objective as space is short and discussion is technical.  Here, I can be more honest.

Case in point: the fact that I have slept a whole 2.5 hours last night after a relaxing family spring break holiday to manage my son's ridiculously high blood sugar due to problems with pump insertion sites is not something I would share on a forum.  If I had a technical question about it, I might seek out advice there, but I'm not going to go there and start a Damn you Diabetes or a Diabetes Sucks thread.  I would rather share that here "privately".

So why a blog?  Just like exercise and yoga, writing is therapeutic for me and I enjoy it.  I keep another blog full of photography and non diabetic observations.  It feels good and right to do that, but as I experience the world as the caretaker of a diabetic child, I have developed a lot of opinions and observations on the subject.  While the prevalence of diabetes is spreading and effects many, it is still a targeted audience.  And, if my thoughts or rants help someone that might be experiencing the same thing, then that is an added bonus.

Maybe as you read some of these posts, you'll laugh - or cry.  Or maybe you will be offended because you disagree… and that is ok.  It is just my story.  But regardless of what you believe about diabetes, I doubt you are alone.

Wednesday, April 16, 2014

Perspective

Life was unexpectedly put into perspective.

At the end of August of 2009, almost exactly 8 years ago, my son was diagnosed with Type 1 diabetes. This is not something that runs in our family so to say it was a shock is an understatement. Immediately he was admitted into the hospital because his blood sugar had been high for who knows how long and needed to be corrected immediately before it caused serious damage to his little 20-month old body.

Like any mom in the same situation, I experienced the emotional roller coaster of feelings - upset, angry, wondering if I did something to cause this to happen because it was so unexpected. At that time, there were very few physicians here who understood Type 1 Diabetes so we could not find the education and support we needed back then. I am so happy to report that this has changed drastically since then, but at the time, it was a very lonely diagnosis. Since my husband and I both worked in healthcare, we immediately started searching for care and treatment options. Texas Children’s Hospital was the end result.

My son and I stayed in Houston for almost a month. We had naively planned to stay for only 10 days.  The doctor was right to suggest this so I could become comfortable with diabetes management.

As angry and upset as I was at this disease throughout this experience, there are absolutely no words to describe what you go through when you get in the elevator with your child and you are surrounded by children and their parents who are facing much more challenging conditions.

On one particular day, before I entered the elevator to go to my son's appointment, I saw two parents pushing a child in a wheelchair that had obviously lost their hair from chemotherapy. Just as the elevator doors were closing, someone pushed the button and another patient entered. This time a boy on a stretcher entered with his mother and his personal nurse. He was connected to a very large medical device.

That was the longest elevator ride in my life.  All I could think was, How did I ever get so lucky? How was my son blessed with a disease that was manageable? Or at least seemed manageable. One that enabled him to live a full, normal life? I was numb because for days I was so upset that my child had Type 1 Diabetes. As difficult as this disease can be, the harsh reality of this was realizing that we had won the lottery.

This did not make me jump for joy by any means, but my heart ached for those parents and others. I was still coming to terms with my own situation, but I was in awe at how they were handling everything under such difficult circumstances. I continued to observe this throughout our visit as well as the randomness of the diseases.

I returned to Dubai with a lot to learn, but at least armed with the knowledge to become my son's pancreas and manage his diabetes for him until he is old enough to do so himself.

I have learned many things from this experience, and continue to learn something new every day. On some days I feel like a pseudo endocrinologist, nurse, dietician and more. It can make my head spin. But still, nothing is as profound as the 15 seconds I spent in that elevator that day.

It reminded me to not sweat the small stuff.  While diabetes is big, every day is still a gift.  Sometimes, in the grand scheme of things, it is not always as bad as we think.

Welcome?

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.  When my son was 20 months old he 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.  He is now eight.  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.

If you stick around, or read something you like, great.  The one thing I ask is that you do not take this as diabetic gospel, or consider it medical advice.  I am opinionated, and I will 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.