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.

Friday, June 19, 2015

Type 1 in 20 Minutes

ISPAD/ASPED/Lilly Course in Abu Dhabi

Last weekend I was honored to speak at the ISPAD/ASPED/Lilly Post Graduate Course in Abu Dhabi focussing on Type 1 Diabetes. Several physicians from the Middle East and North Africa were in attendance, as well as at least one from India. There they presented several cases and shared medical experiences in managing children with Type 1. 

My son’s doctor asked me to participate and speak to the group about the “Parent’s Perspective” of raising a child with Type 1. I was flattered of course, but thought about it a long time. This disease can be crazy sometimes. I wanted to put it in perspective, but not be too boring, but yet not say too much. 

There is so much that goes on in managing a child with a chronic condition. It really is a 24/7 job. Being a mom is too, but add a medical condition on top of that and the responsibility is exponential and sometimes overwhelming.

Where to begin? Could I do it justice? I have presented about diabetes before, but could I talk about this very personal subject without getting emotional? My previous presentation was about addressing the question of quality in diabetes care. This would be much more personal.

I have no fear of speaking in public. I've done it for many years. However, this is diabetes. After my husband saw the slide where I planned to discuss some of my son's feelings and phrases, he said "Wow. Can you make it through that without crying?" I was not sure, but to do the subject matter justice it had to be discussed. Good endocrinologists are aware of these challenges, and if they are not, they need to be.

I highlighted the early days, the challenges of learning what to do. The pancreas is a pretty amazing organ and learning to think like one is not an easy task by any means. The initial acceptance that your child's pancreas does not function, and you will have to think like one is a lot to bare. It is a process. You grieve, but yet you do not have time to do so because you have to immediately get up to speed on diabetes management. I redefined the traditional grief cycle - it is not a rolling hill.  It is a roller coaster. A never ending roller coaster.

Then there is fitting of all things D into your daily life. Life is not always so carefree - even when you want it to be. No matter how hard you try, it is with you all day, every day. Fun family outings or relaxing vacations are sometimes more stressful than the every day. Pancreas thinking is much easier when there is routine. The amount of preparation, and constant follow up required when you are trying to enjoy yourself is cumbersome. It is hard to be a carefree parent because you always have to crash the fun to check in on what the blood sugar is up to. If you don’t do this, things can go bad quickly.

Want to enjoy a family ski vacation or just read a book on the beach? It is not so easy. No matter how hard you try, you will always be watching, wondering. Thinking about the activity and the food intake. Will the weather influence a hypo or a hyperglycemic episode? What did I forget? I love our family travels, but my mind is always occupied.

Sleep.  What is that? My average number of hours improved a few years after diagnosis, but I have never slept so little in my life since D arrived. It comes with the territory. You wonder, you check, you wake up for no reason at all only to find there really was a reason you woke up. You correct for that, but you are so freaked out that you just happened to have the instinct to wake up that you can't go back to sleep.

Then there are all the questions you get and advocating that you have to do on a regular basis - almost daily sometimes. I took them through the top list of random questions that people have asked me. The doctors were shocked at questions like "Does he still need an oxygen mask?" and "Did your cat get (Type 2) diabetes from your son?" I was shocked at these too, but the more random things I am asked, the less shocking they are. However, I still wait for someone to beat the cat question.

I made it through that slide with the things my son says about diabetes. He is pretty well adjusted, but like all Type 1 kids he wishes he wasn't diabetic. The reality that life can be really unfair has hit him all to soon, and yes it is unfair. And yes, I have no answers for him. If I could will this thing leap from his body into mine, I would.

There is not much that can be done clinically to remove these social and psychological factors. You can only deal with them, and continue to advocate and educate. So, I felt it best to close emphasizing the importance of the physician-patient team and managing this thing as it is - chronically, instead of just focussing on one A1C check up. For me this is key in making a difference both clinically and psychologically.

And much to my surprise , I made it through the presentation without crying. Even more surprising, some physicians in the audience cried!  I was glad to see they were touched by the challenges outside of the clinical world, but that was not my intention. However, it is a testament to their dedication and passion for what they do.

I feel like I should put a disclaimer after all of this: If you are new to diabetes and reading this, please do not let this scare you. I had 20 minutes to make a point to about 70 doctors so I needed to tap into our most challenging, emotional moments. I promise it does get easier. It will become your norm, and you will still find that being a parent is the most amazing experience ever - even with diabetes.

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