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.

Tuesday, April 28, 2015

You Know If You Just Tried This....

All of us in the Type 1 Community - caretakers and diabetics alike - we hear about a lot of remedies for Type 1.  And I mean A LOT.

Of course at first diagnosis we are looking for remedies - why? how? How can I get rid of it?

Later comes acceptance...

Ok, I can't get rid of this, but I am going to manage it and fight it full on.

So often we will come across a web site with a cure, or receive unsolicited advice from a relative, or stranger. The need to share unsolicited advice must be human, but now being at the receiving end of a lot of it I find it frustrating sometimes.

Case in point.

I recently received an email from a very sweet friend. She is lovely, smart, genuine and also a mom. She follows a nutritionist who wrote a rather lengthy article about food allergies in relation to a list of growing conditions seen in children. Everything from autism to sleeping intolerance is in this summary.

The article does site some legitimate research that is going on, but it is nowhere near the depth needed for any of the conditions mentioned.

I know my friend sent this with the best intentions, and I loved that she thought about us enough to reach out. But if I am honest, these articles are a painful reminder at the same time.

When our children are diagnosed - and I am going to be bold here and say when they are diagnosed with anything on that list, I bet just as I did, all those other moms out there wanted answers too. We searched the internet high and low looking for answers, looking for what caused this, looking for where we went wrong, and a possible cure.

What we found were a host of reasons - many of which we exposed our children to. Ate wheat, dairy, potatoes, had fruits... and the list goes on.

What happened next? We felt extremely guilty and blamed ourselves for our child's condition. We did things that had been done for years, and deemed healthy, but yet our outcomes resulted in something less than perfect. We must have caused it.

This is a big demon to deal with, but this is the reality of what we faced. We did not let our child play in the street, but worse. We fed them and nourished them.

This particular article mentions that breastfeeding greatly reduces the risk of Type 1, as well as not eating meat, and no dairy until as late as possible.  Well, guess what.  I did all that!

I breast fed, I did not eat meat, nor did my child for many years. I personally do not enjoy meat, so I did not eat it before, during or after pregnancy.  Dairy was not introduced until around 6 months of age. I even made my own baby food when possible from organic produce or bought organic if I could not make it.  Gwenyth Paltrow got a run for her money on that one.

Essentially, I followed the advice of that article, and went the extra organic mile, and my child still ended up with this thing. But yet, I must have caused this somehow.

No, I did not.

My point is. These articles, and sometimes the advice has the best intention as this one did. Despite all those good intentions, it is painful. For me, it takes me back to those days when I really thought I caused this. It makes me question my choices all over again.

My friend is not even implying that at all, but this is how that article and many others like it make me feel. It reminds me of that time desperately searching for answers.

Answers that no one has yet. We hope someday there will be answers, but for the time being we are still not sure.

If you or someone you love has recently been diagnosed with Type 1, stop reading all the advice on the internet. Instead, search for communities of other Type 1s. They will steer you in the right direction and openly share their very real experiences with you.

Friday, April 10, 2015

Advocacy and Doctors

As a parent, part of our job role is to advocate for our children.

As the parent of a diabetic child, you will come to understand a much deeper meaning of advocacy than you ever imagined possible. When your child is left out of a normal school activity because someone does not understand diabetes, when they are sick in the hospital and the doctor does not know how to treat DKA, when you ride an airplane and need to carry juice to treat a hypoglycemia (yes, they have juice on planes, but enter turbulence and you will not get any) on the phone with your insurance company to fight for critical supplies, or even something as simple as entering an auditorium that does not want you to bring in food or drink – you are the advocate for keeping your child healthy and safe.

Advocacy also includes general doctor visits.

One thing I have realized in the last five or so years since diabetes entered our lives is that I really do understand diabetes in our context. Yes, it baffles me at times, but 5 years of 24x7 caretaking…it happens.

Our first endocrinologist taught us how to be self-sufficient. Therefore, I can now partner with his current specialist in planning our care, and sadly I understand the in’s and out’s of diabetes just as good if not better than a general doctor whose specialty is not diabetes. I’m probably freaking out my cat’s veterinarian has he speaks to me about her new diabetic diagnosis. No one has ever asked him about DKA in a cat before.

I hate that we have gone to the Emergency Room and the head doctor opened a book to figure out what to do with a Type 1 child. While I hate it, I am thankful I have acquired knowledge to advocate for him and even suggest references to the doctor.

Any Type 1 caretaker that has been at it a while will likely have a similar story. We make decisions about our child’s care to the point where we have to anticipate what might happen when he is sick, travelling, stressed, participating in sports, attending a birthday party, sleeping and more. 

As the caretaker of your own diabetes, or the caretaker of a diabetic, although exhausting, we must make it our business to understand just as much if not more about this disease than the doctors you visit.  At some point in time, you will become an expert in your diabetes based on what knowledge is out there and what practical experience you have learned on the way. You will learn to ask questions rather than to follow orders.  You will become a critical part of the team that makes decisions in your child’s care.

However, there are doctors out there that you will come across that will always think they know better. In many cultures, “doctor” is regarded as the highest profession and can do no wrong.

I get that, and do not want to disregard their opinions. Doctors go to school a long time to become experts in their field and advise us about our child’s care. People go to doctors to look for answers.

Unfortunately, we are of that percent of the population where our learning curve and a general doctor’s knowledge of my son’s specific case cross, or in some cases we’ve passed it.

We experienced this again recently. We visited a generalist for something not diabetic related.  The first question I am asked was not about the reason for our visit, but what is what is his A1C. I understand he is diabetic. It is part of medical history for him, but that is not why I am there, so I do not wish to dwell on it, but he does.

The last was 7.1, which we checked during an endocrinologist visit just a few weeks before. While a nondiabetic is between 4 and 5.6, I know it will be some time before he gets closer to that.  I always strive for something below 7. Even though the world recommended standard recently changed from something in the 8 range to a 7.5, I will keep working toward something that starts with a 6. It is possible, as we have seen this number before.

His endocrinologist thinks we are amazing to the point we may not even consider a CGM right now.  However, I still want it to be better even though according to world standards we could be doing much worse.

But yet, from this doctor, the tone is completely different from his endocrinologist and I get kind of reprimanded about the result. Yes, I know as a diabetic my son risks heart disease, loosing eyesight, loosing a foot, shorter life span and all other kinds of complications if this is not managed. Exaggerated? Yes and No. This is the reality if I did not manage his blood sugar well. Believe me, I know.

My heart breaks on a regular basis for him, and it terrifies the crap out of me, therefore I fight it 24 hours a day just like other fully engaged T1 caretakers. Holding up my job as caretaker, what I don’t need from a doctor is a lecture or scolding. The reality of life is brutal enough to drive me to try to surpass any global standard. I don’t get a chance to really verbalize this because I am the patient and he is the doctor.

In addition to questioning our management of diabetes, I was not really heard for the condition I was suspicious that he had. My suggestion was disregarded because an in office quick test showed negative. Call it intuition or whatever, that thing needed to go to the lab for further culturing.

Still home from school with fever, we were back for another visit one week later as the symptoms did not go away. At that time, the doctor insisted there was more lab work to do because he was diabetic. Two failed, traumatic attempts to take blood from each arm, and a urine test, the infection that I suspected and suggested he might have all along was confirmed by sending a simple throat culture to the lab. (Had he not been due for an annual thyroid test in a few months, I would never have agreed to the blood tests).

I hang up the phone angry. Angry that my son had to endure this for two weeks, angry that he has to deal with a life of needles and had two extra ones that day for no reason, and angry that I did not press on because I did not advocate hard enough on that day.

Moral of the story. Doctors do not always know everything. Many have a general understanding of a lot of diseases, but a generalist in most cases will not understand the details of what you need for your chronic illness. This is why we seek out specialists that do have the depth.

But when faced with such situations, why are we hesitant to question it more, or speak out more? I Doctors may not like this as no one questions them, but we have to. Or if not question, politely probe to understand what they think rather than to just be given orders. It is our job as parents to partner with our physicians to understand the best treatment for our children.

Doctors are products of their education, and we are too. Two heads, or a team of heads really are better than one and if we take a passive role in that discussion and do not advocate for our child – whether that be trust in our parental instincts or discuss realistic benchmarks and suspicions, then in the end both doctor and care taker have done a huge disservice to the child.

In the end, we only set the child up for a prolonged treatment or misdiagnosis at that point in time, and it also teaches them to play a passive role in their care as they get older.

This disease is often a silent nuisance. Sometimes it is referred to as the “silent killer”. It is no joke and nothing will be managed if we do not get in the ring with it, even if that means questioning a doctor.

Saturday, April 4, 2015

What the Zip Line Reminded Me About Diabetes

Zip lining through Sentosa Island, Singapore

With my son two weeks off from school for Spring Break, we decided to head East to Singapore. My husband and I have both been before, and although it has changed and improved exponentially, we just focussed on some of the major family highlights and spending some much needed quality time together.

During this trip, we went back to Sentosa Island as it had much more to offer than the first time around - including a zip line. This included a nice walk through the manmade bridges and paths to the start. 

We arrived, strapped up and signed our life away before ascending several stories up a tower. I’m no expert in distance, but it was high. As we overlooked the jungle as they were clipping us onto the lines, my son confided in me that he was a little scared.  I told him I was too. I was a bit surprised because he takes after his father in these adrenaline things. 

I then looked over at my husband, veteran New Zealand Canyon Swinger and Sky Diver, like I must be nuts. I was about to hurl myself into the jungles of Sentosa, son first.

Before we knew it, we were released and flying down the line. It was exhilarating, but I held on for dear life. My son, immediately howled with excitement and let go with his arms wide open embracing everything that life had to offer at that moment.

They company that manages the zip line took this picture of us. Although you cannot see our faces, I thought this was quite analogous for how we often manage diabetes in small children. They are really unaware of your fear as you hold on for dear life. 

The diabetic child is often oblivious to the risks they face, but yet we hang on behind them as we encourage them to take on the world knowing no different. They ride shot gun as we are in "control" into the uncertain and unknown.

I don’t know when they realize both the real and implied risks that go along with this condition. For us, we introduce things in an age appropriate context as they come. We can only hope that he has healthy relationship with whatever he faces on this crazy ride. Sometimes it may require a fair amount of trust and throwing all caution to the wind to enjoy the ride.