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, December 18, 2015
I was going through some pictures today and I came across this one of my son. I took this just one month after his diagnosis.
He was so small - around 20 months old. When I look at children that age I still find it hard to believe he was that young.
We have come so far since that time. I think I only got his pump the day before I took this - I didn't even have it in a pump pack yet as you can see. I was for sure not sleeping, incredibly worried, scared and then some. Fast forward to today, he will be 8 next month.
He is a happy, and pretty healthy 8 year old that is growing up with T1. For those who are new to this diagnosis: It will be ok. It will be quite a ride. You will learn a lot and sometimes it won't be easy, but it will be ok....
Thursday, December 10, 2015
Although I felt I had much to do that afternoon, I decided why not? Be the cool parent for a change. Even though we spend a lot of quality time together, he will not be young forever and before I know it, I will not be so cool, and he’ll want to eat chicken wings with his friends.
As we were ordering, he asked me if he could drink a cola. For many families, this is an everyday occurrence. In an effort to just be healthier in general, we only buy them when we are hosting parties or drink the occasional one when out. It is a healthier option for any child, and I save myself. If they are there, I will start drinking them!
I was too tired to bargain on this one. However, it was dinner time and I did not want to be up all night managing blood sugars. For us, I find these things sit better during mid-day. Not sure if it is because the body can use the energy or some other metabolic phenomenon, but I usually notice a late night spike when a sugary drink is involved even if I bolused correctly.
That day and time, diet cola was the lesser of the two evils. He was perfectly fine with that as we do not drink those much either.
When our waiter came, I ordered two diet colas. He paused. As he wrote the order he verbalized “One regular and one diet coke”.
I corrected it politely. “No, that was two diet colas”. He paused again and tilted his head in that funny way to question it.
I wasn’t sure what was so confusing, but just to reconfirm again I restated the order and “two diet colas”.
He then he started to mumble and gesture with his hands.
“Sorry, I do not understand”, I said. He then proceeds to tell me as he motions toward my son, “He is a child. Regular cola is better for him.” Seriously? BETTER?
Too tired to go into details, I politely state again, “No, two diet colas will be fine”.
He was quite the persistent waiter. He then tried to reason with me. “Come on, he is a small boy. He needs cola”. Seriously? Who NEEDS cola?
Again, but a little more firmly this time, probably gritting my teeth in order to not shout “No, he doesn’t need regular cola. Two diet colas will be fine.”
I see my son watching patiently, perhaps almost entertained with widening eyes. It is not the first time he has seen me advocate for something. Fortunately he understands diabetes.
But yet, the waiter insisted again. Insisting in that shrug your shoulders kind of way as if I am almost abusing my child and depriving him of the essence of childhood. "Come on" he said as he pleaded to me.
My patience had run out long ago. This time I stood up and called the guy to follow me a few tables away. Knowing he would not grasp the whole Type 1 thing in the few seconds that I was willing to spend with him, I left it at “My son is a Type 1 diabetic. I do not want him to have a regular cola right now. Please. Take my advice. Do not question your customers’ choices for their children. Sometimes there are good reasons for this that you may not be aware of”.
Even saying that felt like too much of an explanation, but that is what came out. I didn’t shout, but there must have been some form of “Are you kidding me?” rage oozing out of my ears because I could see he was surprised. He got the point.
I know he didn’t mean to be rude, or keep insisting. It is not uncommon for people to insist their ideas are right – especially when it comes to children - even though I am pretty sure this guy was too young to have any.
I have lived in places where it is the norm for strangers to give their advice. I hate it, and even people in those cultures do too, but it still happens. It happens more as I publically manage my son’s diabetes, and he will also come across similar situations where someone will insist that cinnamon will cure it.
Best I can do is advocate for him, and try to lead by example so he is prepared when it becomes time for self-management. I am not always the best example, but at least this time as I sat down my son didn’t question me or my response. We carried on talking about his day at school.
Later I asked for more napkins as we enjoyed our messy wings he brought me a mountain of paper. He may still be clueless about Type 1, but hopefully he will not impose on a customer again.
Mom – 1, Stranger imposing their opinion – 0.
Wednesday, November 25, 2015
Gratitude and appreciation are something I place high importance on. We are truly blessed and fortunate for many reasons, and what we have available here to us to help manage my son's Type 1 is definitely something to not take for granted.
As I dropped him at school today for a field trip, I found myself thankful for everything and everyone working toward making sure he can do this and other activities as a non-diabetic primary school child does.
I am so thankful for the help we have that can cover these activities if I cannot go, the nurses in his health office that are always on top of everything at school, his teacher that was ready to carry his entire box of class emergency snacks and supplies on the field trip (although not necessary, but her enthusiasm and pro-activeness says so much), and the cooperation of everyone to make all this happen easily.
This week I met several people who have dedicated their life to diabetes. Other diabetics, caretakers, advocates, physicians, managers and many others who are dedicated to making life better for diabetics. For their time and effort, and the potential of what's to come, I am thankful.
And then of course there is insulin. That in itself is a miracle. Insulin and all the other medical developments that have gone into making it possible to live with diabetes. I am also thankful for those who continue to work diligently to improve what we already have and those with the hope for more.
Thursday, November 19, 2015
It is totally accurate. The biggest one is Dubai - where I live of course.
Something else struck me as interesting. Despite all the pictures and articles I share about Dubai or moments I have enjoyed, one thing is always there. Diabetes.
Diabetes is there. Right under the word "Amazing", and just before "Today". Amazing Diabetes is there every Day.
This is very illustrative to my life. Not a day goes by that I don't think about diabetes or do something related to diabetes. If I actually wrote about those in my Facebook status, I am sure that word would be even bigger than Dubai. The subject could consume the whole cloud if I let it.
Moral of my story. Diabetes it is always there. We take it with us everywhere we go - or rather it stalks us to some extent. Sometimes it is a nuisance, but we live with it and manage it best we can. It is along for the ride and not going away anytime soon.
But that is ok. When I look at the rest of the words there, it makes me smile because I hope it means that we are working it into some pretty cool experiences and memories.
Don't let it stop you - just make it part of your word cloud!
Saturday, November 14, 2015
It is the day that Frederick Banting who, along with Charles Best and John James Rickard Macleod discovered insulin in 1922. If he were alive today, I would personally seek him out and hug him... Really.
I had a few other subjects in mind for this day, but considering the events that happened in Beirut and Paris yesterday I thought it might be a good time to highlight emergency preparedness for diabetics.
I grew up slightly risk adverse. My father was a risk manager. In my healthcare career I have also worked on risk management programs for hospitals. I am a firm believer in pro-activeness.
While not everything is in our control, we can try to be prepared for the unthinkable. For my diabetic son, I do not take that subject lightly.
I have emergency boxes in every classroom at his school, and his nurses have a plan too. I have small bags of glucose tabs and a few other non perishables within his reach in my car. Those are not full emergency kits as he does not leave the house without a bag that includes additional insulin, glucogen, syringes, juice, water, batteries for his insulin pump, and snacks.
At home, I have an even larger backpack with juice, water, non perishable food, glucogen, flashlights, a small first aid kit, batteries, additional insulin pump supplies and more.
It is horrible to think about the unthinkable. I too wish it would stop. However, emergencies are not only manmade. We should also consider natural disasters. Whenever I read about any emergency, the first thing that comes to my mind are those with chronic diseases - especially Type 1 Diabetics.
On a day that should be about the unity of the blue circle that represents the world coming together to address diabetes, we are unified by grief due to acts of violence. Our condolences to those who have lost loved ones in this tragedy.
|Our Diabetic Emergency Bag. It sits behind the door.|
Thursday, November 5, 2015
At the beginning of the month, I read about an app that puts the blue diabetes circle on a picture. I liked this idea and thought I would use it on an image of my son and upload that as my profile picture for the month.
I chose an image that was a silhouette of him flying a paper airplane. I love that image. It captures everything a boy at that age should be - carefree.
After I watermarked this image with the diabetes blue circle, I felt uncomfortable. The feel of the image had completely changed. By no means are we in denial about anything diabetes related. There is no shame in anything diabetes, or in him as a diabetic. However, at that moment, my son was labeled. I had just labeled him.
The blue circle that is supposed to represent the unity of the global diabetes community response to the disease now symbolized everything that was stolen from him as a result of diabetes - a true carefree childhood. I held off on asking my son if I could use the picture.
I also considered another initiative, "T1D Looks Like Me". It has caught on and many parents are posting blue images of their children with that phrase on it. There are kids of all ages overcoming diabetes and doing great things. There is even a Type 1 age 70 that participated - he is an inspiration to many. They are all inspirational, but yet because of my feelings about the blue circle picture, I had not yet posted the same.
Although I felt uncomfortable with our image, I thought it could be nice to show my son that there are other children his age living with Type 1. There are three other diabetic children in his school, but seeing so many blue pictures exemplifies the magnitude of how many people are living with this. His first reaction when he saw all the blue hued pictures was, "Where's mine?" I explained to him that I was not sure if he wanted me to post a blue image of him. I wanted to ask him first.
The next day at dinner, we were discussing a boy at school that is overly curious about his pump. My son is very well versed in presenting diabetes, but recently if someone seems overly interested in it, or he is not sure of their motivation, he tells them it is "personal and private". And it is. What goes on with a person's body and health information is exactly that - personal and private. Also, after the playground incident I recently wrote about where he was kicked in the stomach in his insertion site, he is much more selective in how he shares this.
It is his body, his disease. Some people share, others do not. I respect both decisions. I advocate and work with various diabetic groups in our local community, but I do not insist that he do the same. I am sometimes asked by organizers why my son did not join me for certain presentations. If he wants to he can, but I do not feel it is my place to suggest he do this or use him as the face of what I do. As he grows up he will learn more about what is out there, and express or share his diabetes in his own way.
Please note, this post is intended to judgment on anyone that does participate in initiatives that I do not. That is not the intention at all. It is more of a please excuse me if we do not participate, and this is why.
I think it is great to advocate, and if you choose to do so it is most important that it is done in a way that works best for you and your family. In the case of the blue pictures of all the T1s and other images, I thank you for helping my son understand that there are many others out there like him.
Tuesday, November 3, 2015
Tuesday, October 27, 2015
For a diabetic, this can be a bit of a nightmare - especially if you have to navigate your way around a large variety of candy that you may not typically eat.
Well, good news. The JDRF has a page that includes typical Halloween candy carb counts! This is fantastic for Type 1s so we know how much insulin to dose based on our carb to insulin ratios.
For any Type 2s, it can give you some guidance if you have a daily carb target, or just want to be aware of what you are eating.
You can find the page here.
Wednesday, October 21, 2015
Unfortunately, at recess my son was intentionally kicked by another child in the insertion site on his stomach. I think he was aiming for his insulin pump which my son carries in a pump pack around his waist, and he got kicked in the insertion site as well.
My son called me from the school health office for reassurance, and I thought maybe it was just an accident or a playground game that got out of hand. A few hours later the principal called me to apologize. As I listened to her explain what happened as my child went to ask some boys if he could join in their game, I felt as if I myself had been kicked in the gut.
I remained calm, and tried to be civilized about it. Even though I think it is a situation that gives me a pass to go nuts, I somehow remained calm. It was only from the principal that I understood it was intentional. Unfortunately, I did not understand the seriousness from my 7-year old when we spoke on the phone earlier.
I didn't get it at the time. I felt awful for not getting it, and even more awful for encouraging him a few weeks ago to ask kids on his school playground if he could join them during recess. I would have never expected in my wildest dreams the answer would be a firm "No!" and a kick in the gut.
Despite all of this, I am amazed at how my son is handling it all. I went to school that afternoon at pick up time. He was fine playing with a friend on the playground. We talked about it later and he was very matter of fact about the situation and how the school managed it.
He understood the process behind the school's response very well. I was informed the other child is getting some kind of disciplinary action both at school and home, but I am not sure what. I am not too interested in his details because we have enough to deal with on our side of the story.
I chose this school because I could relate to it academically, and they had experience with diabetic children, so I felt comfortable leaving my 5-year old Type 1 there three years ago. Since then they have very much exceeded my expectations in helping him navigate his school days with this disease.
Little did I know his nurse and others would advocate so hard for him in his time of need. The follow up from his teacher, school counselor and principal were more than any parent could ask for. When I read about others' experiences in the West, I am often shocked. I cringe when I read about the legality of it all, and how the fear of this sets a child up for potential neglect or harm. It shouldn't be this way.
At a previous meeting I attended, the physicians in the room asked for school advice to tell the parents of their patients. As not everyone will embrace the diabetic situation, my best advice is to find the one person that will champion your child's situation.
They may not have a medical background, or completely understand diabetes. Find the person who cares about the welfare of your child. And once you do find them, build that relationship, and hold on to them. It will be that teacher or employee that will advocate for your child when you are not there to do so.
We are truly lucky to be where we are right now. It may not be like this forever, but I often remind the nurses in the school health office that they cannot ever leave Dubai before my son graduates!
Sunday, September 13, 2015
My son has never been a fan of having blood taken. Show me a kid that is.
When he was diagnosed at 20 months old, this was the worst part of the hospital stay. They called everyone from phlebotomy to the NICU and it was as if no one could find my son's veins. No amount of numbing cream was enough to lessen the pain for him. Five years later and its not much easier.
When I confirmed, he was obviously upset. At first he tried to refuse, but he knows we have to do this once a year.
A nurse escorted us to the phlebotomist. A woman from the Far East who works at the hospital asked "For Baby?" It is not uncommon for some cultures to refer to young children as a baby. I do not know at what age a child is no longer referred to as such, but I am sometimes surprised a seven year old classifies.
We follow the nurse in the direction given. My son still crying as he anticipates what will happen next. The nurse turns back to my son to tell him that the woman called him a baby because he was crying.
I am not certain if it was my son's response to her as he shouted through his tears "I am NOT a baby!" or my look to her, but she understood right away that was a stupid thing to say. Yes, the "s" word.. Stupid.
I ensured him he was not a baby, and it was okay to cry or be scared. I also told him it will be okay and over quickly. It is hard for any child to understand.
Before my son took his plate to the kitchen after dinner that night, I stopped him. I told him to sit down because I wanted to share something important with him about our doctor visit that I did not like.
I told him that when we were walking to the lab, I did not like that the nurse called him a baby. It wasn't right. And it is absolutely not true. It is okay to be scared and cry because what he did, and what he deals with everyday is not easy. He is brave, and he is my hero... and he is most certainly not a baby.
Wednesday, September 2, 2015
Finger checks are easy, but if you use an insulin pump or continuous glucose monitor (CGM) those needles are not small.
We always used my son's backside because he was small and then it would be out of his way. Of course one cannot continue to use the same tissue as it will not absorb the insulin well if overused.
Around age five or six, we started to try to introduce an alternative to let that tissue rest. The alternative was the ever so common abdomen.
For us, that brought on a whole new set of fears. The insertion is right there in an in-your-face kind of way. It is a natural reaction to curl into a ball when we are hurt or fear something. It is very hard to open up and do the opposite of instinct to get that cannula in a good position when you fear something.
These were the times when we most felt that diabetes was not fair. And he is right - it is not fair to have a lifetime of 2 inch needles to the stomach. Who could blame him?
We tried a few times and then it became too upsetting, so I decided to continue alternating on the back side. The kid has enough to deal with in this disease. I was hoping that he would know in his own time when he is ready.
I tried to show him videos that some parents put on Youtube when they would insert a site for their child. The child just laid there comfortably. This only made my son more upset as he felt he wasn't brave enough as the children in the videos were sometimes younger than him.
This summer, something changed. He stopped requesting someone to cover his eyes for a stomach insertion. The discussion to prepare would be a tearful 30 minutes or more sometimes, but recently, it somehow got easier.
Then the other day, the first week of second grade he says to me "I want to do it in my stomach". What? Are you sure? "Yes", he says.
He did not want anyone to cover his eyes. Just himself. A few deep breaths and repeating to himself that he can do it. One last deep breath and then he gave me the physical cue to go. I pushed the button on the inserter and the spring thrust the needle into his stomach. He held his breath as I removed the needle, put the tape down and checked that the cannula was in. Once all was confirmed, he let out a huge breath of relief.
It is good that he breathes because I am never able to throughout this process. Ever. I am so scared / in overdrive, but trying to stay calm / wishing it to go in perfectly that I forget to breathe. Every ounce of my being is focused on doing this correctly for him.
Before he moved his hands away from his face, he paused. Typically after an insertion in the stomach, we would both be in tears followed by a huge hug and me reminding him how he is the bravest boy I know - which is so true.
But this time was different. He peeked out from under his hands, looked down at the insertion, looked at me and paused again. He leaned slightly forward and with wide eyes whispered, "I am okay. I don't need to cry."
Tuesday, August 18, 2015
Summer is almost finished. And despite all those off routine things that happen to a diabetic, I am still not too excited at the routine that is awaiting us just around the corner. It will be fine, but getting back into routine and all the diabetic prep required for school requires one big breath.
We had a fantastic summer.. My son had a fantastic summer, and while we saw a couple of epic lows, diabetes did not stop him from enjoying travel, hiking, going to the beach, being with his friends and just being a kid.
I think two of the coolest things that happened this summer is that my son met two other diabetics - a young woman at a camp he went to and a five year old boy we came across while traveling.
He did not verbalize it, but I could tell that just having someone at the day camp in this context to relate to and share his pump and carb stuff with that "gets it" was a cool thing for him.
The boy we met at a cafe while having lunch on vacation France. He had been riding his bike with his dad and brother and when they sat down, they checked his blood sugar. My husband noticed that unmistakable tube sticking out of the boy's clothes.
While I didn't expect them to become best friends or pen pals, I thought it was too cool an opportunity to pass up. I was like that alien in that diabetic meme "He's one of us!" So as we were leaving, we walked over to say hello and introduce ourselves.
I am not sure, but a small part of me felt that the boy's dad maybe thought I was nuts (which could be true). Or maybe it is just an American thing to not be so indiscreet about diabetes and introduce ourselves. I am not sure if people with other medical devices walk by and high five each other. Maybe they do.
Although surprised, the father was receptive and told us his son was diagnosed two years ago. What he said next was key. "But it is fine. We are okay and everything is normal." We exchanged a few more words and then went on our way.
Reinforcement is nice, and it is good to see diabetic children doing normal kid stuff. And, more importantly, it is good for diabetic children to meet others like them.
Wednesday, July 29, 2015
Summer is going so fast.. and in Dubai, although it is still hot, school is fast approaching. Just about one month left and we will be back to our early morning routine and rushing to make it to school on time.
And although a whole month, you know it will fly by! Just a few more working days to get our school supplies, clothes or uniforms, shoes and everything else in order.
Insulin doses change over summer with varied schedules and activities. And our kids grew, so that effects insulin too. In addition to documents, you should consider urgent/emergency boxes for each classroom, supplies for the health office, get any check ups needed, and of course you will want to try to meet the teachers before the first day of school. If you can, try to get the general schedule prior to school starting to help anticipate carb:insulin ratios, or pump settings if you pump.
Start early. Getting prepped for diabetes back to school can take more time than getting ready for the academic part itself. Don't underestimate the time it will take to write down doses and outline specific instructions for various situations.
The first year is of course the most challenging. The good news is after that, you can use the previous years as a template as you go, but it still takes some time to do it well.
It can be intimidating, and I have also found emotionally draining at times. As a caretaker, you are already living, eating, sleeping, breathing diabetes. To detail that on paper can be overwhelming. The good news is there are a lot of resources available on the internet to start with.
I have used the American Diabetes Association (ADA) Diabetes Management Plan templates and they have been great. My son's nurses like them so much they have asked other families with diabetic children to use the same. If not ADA, there are many other resources out there.
For example, the National Diabetes Education Program (NDEP) Heading Back to School resources. This is very thorough - like down to the food server and bus driver. Not all sections may apply to your child or your school or country's culture, but it can give you some good ideas.
Just Google "Diabetes Back to School" and you will get many options to consider. Don't let the numerous results overwhelm you. Read a few, mix the best two or three resources if that works, or just start with one template. One is a good start. It is important to have something to work with, and a document that gives you a point of reference and communication. One is always better than nothing.
And between all this planning and behind the scenes madness that your child may or may not realize is happening, don't forget to enjoy the fun stuff. Yes, school parties and the amount of junk (crazy extra carbs) that people feed their kids will make you shake your head sometimes; but sometimes we will have to take a deep breath to that donut or whatever it is that you would never eat at home, or whatever it is you will try to avoid because it causes a spike in your child's blood sugar.
Breathe deep, and don't forget to enjoy all the good stuff in between the blood sugar checks and carb counts. It will pass in a blur before you know it!
|One of my son's favorite teachers taking him to the nurse to check|
his blood sugar a few years ago
Monday, July 13, 2015
May Kycie rest in peace and her family find strength during this very difficult time.
|Source: JDRF, www.jdrf.org|
Friday, June 19, 2015
|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 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.
Tuesday, June 2, 2015
We were talking about work and she asked me what I wanted to do. She is aware of my ability - I used to be a consultant and all that good stuff. She asked me what I would like to do because I could "do so much more".
She didn't mean that I am being lazy and not working. What she meant was that I can climb the corporate ladder - shoot for a higher position and whatever else comes with that.
It is flattering, but I politely declined. I have worked on several projects and throughout those there is always that crazy week or two where your life is not your own because others are late, things are chaotic and it is just out of your control because well, stuff happens. I cited this as my reason. And it is not completely untrue. I can do that from time to time, but I do not want every week of my life to resemble this.
What I didn't tell her is that I already am doing more. A lot more. I pull more all nighters than I ever did as a young adult out with my friends. The amount of responsibility that comes with the role of caretaker for a Type 1 Diabetic is "So Much More".
Crazy presentation to prepare, up all night waiting for others' input. I'd take that over any sick night my child has with diabetes. I promise the night full of vomiting, keytone and hypoglycemia watch, and all else that comes with that is much more challenging than building a business strategy.
In addition to taking care of my son's health, I also have more opportunity to be a mom than if I were in a higher position. Diabetes aside, why would I want to miss his life events because I am over allocated? I am already multi-tasking on several things, so why would I want to carry more? I don't. I'm not sure it is possible - especially if they don't develop time travel or figure out how to make the days longer.
And, while I do not have a lot of free time, I do squeeze in some diabetes advocacy and activities from time to time. Before the "Big D", I was a healthcare manager and consultant. I left that job to focus on my sons health. Yes, irony. With that background, it is very hard for me to sit back and not "do more".
So could I do more? I could probably do with more sleep, but who has time for that when there is so much to be done!
Wednesday, May 20, 2015
Last week I read Typecast: Amazing People Overcoming the Chronic Disease of Type 1 Diabetes. I appreciated this book for many reasons. Mostly because it highlights a few people dealing with Type 1 - some have it, some are caretakers, others are in the healthcare industry helping patients - and it focusses on how attitude can overcome the negative around the disease.
The author, Andrew Deutscher, is a caretaker of a Type 1 child like me, so I could relate to a lot of what he wrote. So much in fact, that early on in the book he could have taken the thoughts right out of my head. They are of course his own, but I often think similar things, and I am sure other caretakers do too.
It is a focus on attitude, which we know is pretty much the secret to overcoming adversity - diabetes included. How we choose to deal with a situation will give us strength, and also affect the outcome of the situation.
All of the examples were inspiring, but the one I appreciated the most was a discussion about Barbara Anderson, PhD, an Associate Professor at Baylor College of Medicine in Houston, Texas. She has worked at all the leading diabetic institutions in the US, and in 2003, won the American Diabetes Association Outstanding Educator award. I am sure she has since won many more.
I so appreciated her views on how medical teams should deal with diabetic patients. In short, the message was to work as a team and focus on the process. Do not beat patients up on the outcomes. This is what I was getting at in an earlier blog post, but could not articulate it as well.
The discussion cited parents and doctors who really gave their children or patients a hard time for a "bad" A1C number, but this is not the answer to helping them. Focus on the process is key. Diabetes is a chronic thing that we live with daily, so just defining it by one number - even though an indicator of three months - will only leave the patient feeling negative about their care.
She compares it to horse whispering when she addresses the ADA in 2003, the year of her recognition I mention. I find this approach to be so true, and realize those doctors that I have "clicked" with, are those that are focussed on the process with me.
Earlier in diagnosis when we were back to Houston for a check up, my son's A1C was not where I wanted it to be. Although it could have been much worse, I was so disappointed in this number. We (I) had been working so hard. Day after day. Sleepless night after sleepless night. Our endocrinologist there (who I should really call my mentor in navigating this disease) basically told me well, it didn't work out the way you wanted it this time, so what can we improve to make it better next time?
I was floored by this response. There was no shame, no ridicule. But why should there be? No amount of ridicule would change the past. The only thing left to do was to work with them to fine tune ratios and settings and work toward the future.
I guess the lesson I learned is if we fall off the horse, the best thing we can do is try to get back on, or keep trying to work with it and "join up" as described in Dr. Andersen's speech.
Today, in 2003, we have learned that it is by listening to and respecting our patients' agendas and by being open to our patients' language that we can come to adjust our most fundamental tools - our words, minds, and our hearts - to create a more meaningful "joining up" with our patients.
To read the full address, click here.
Monday, May 18, 2015
So while I could not post last night - I want to close out this topic for sure, because this is what it is all about. Connecting - the "very first inspiration for DBW... and that is the most important reason it is held every year".
So a special THANK YOU to Karen Graffeo at Bitter-Sweet for organizing this every year. What a great way to get people connected at an even deeper level. Who says technology is not personable and lacks that warm fuzzy feeling? Ha!
There are hundreds of great entries to read and learn from. I will continue to read after this week for sure. A few highlights for me this time were:
Yoga for Diabetes. Once upon a time I had a great yoga practice. It really did make a difference with how I dealt with life and remembering to breath. I often say that diabetes is a zen disease that keeps one in the present. Yoga for Diabetes was a good reminder that I should also find my zen in other more "conventional" ways. Rachel Zinman is very open and honest in her writing - and also has some beautiful images in her blog too.
I love Sarah's blog Coffee & Insulin for many reasons. Her posts are funny, she writes beautifully and she combines her love of travel into her blog. Which just makes so much sense! I am a caretaker of diabetes, but I always see the roles of traveler-photographer and diabetic caretaker separate. What her writing and blog illustrated to me was that these are not separate things. Diabetes is part of our life. Like it or not, it is there everywhere we go.
This was my second year to participate in Blog Week, and I am sorry to see it go. While my work week was incredibly long, my time with the DOC passed quickly. Fortunately we can log on and find each other at any time of day. I look forward to a continued connection with and learning from you all.
And having said that I must go. My son just said those three magic words to me "I feel low".
Saturday, May 16, 2015
My posts are more about sharing, and wanting to make a difference. If anything resonates with anyone out there in a similar situation, then I am happy it helped.
Favorites. Now that is a loaded word.
I have two. Depending on your mood - if you want a good laugh, go with There Will Be Questions. If you want something a little more serious, and wish to read about the day my attitude change toward diabetes, then go to Perspective.
Perspective was the first post I ever wrote here. I wrote it some time before I started this blog. Even editing it several years later was quite an emotional task. Telling the story takes me back to that place. How unfair life is. How we are so lucky. That was the day I decided to look diabetes in the eyes. It was still quite early on in our diagnosis, which was good, but it was the day that changed my attitude. It did not make my learning curve any easier, but it often reminded me to suck it up.
There Will Be Questions are some of my "favorite" questions and reactions I have had about my sons diabetes. It was inspired by a parent that questioned if our lovely old cat caught her diabetes from my son. I kid you not. I can't really elaborate much more about it, because even though it was almost one year ago, I am still a little amused and speechless.
As for the cat, she is on insulin. One shot a day. I feel it could be better managed, but the vet keeps telling me "in cats it is different". I am still not so sure, but even though Type 2, what a great educational tool.
Friday, May 15, 2015
Our secret - we do not feed our Type 1 child any different than if he were not diabetic. Why is that? Well, we cover carbs with insulin, but we try to eat healthy. Sure we are moderate and not rigid in this, but we promote healthy choices whenever possible and avoid processed foods or fads that are oversold as healthy.
Of course there were challenges when my son was diagnosed at 20 months old. Getting enough carbs in a toddler when they are being picky can be tough. We survived those years, and were still able to promote healthy eating. If he didn't get enough carbs, fortunately, we were able to top him up with a little apple sauce or something else.
Now that he is seven, we are still promoting healthy eating and he gets it most of the time. If he wants the one off treat or "unhealthy" choice, then so be it. He will have to learn to eventually navigate his food choices and manage his blood sugar as a result, so I rather we learn that while he is young so he has an idea as he gets older and manages it.
A typical school day might consist of:
Breakfast - nothing with refined sugars. That will only make his blood sugar spike like crazy. I have no proof, but I swear those cereals geared toward children are evil - even the organic kids cereals are full of sugar! So something moderate like Cheerios or CornFlakes, toast, homemade pancakes, and eggs are included in that sometimes. It just depends on our mood.
Snacks: (which we do twice a day) can be many things, but usually focus on a fruit and/or vegetable, yogurt, cheese or whatever else sounds good. We like to cook and bake, so while we do buy bars and things like this, we often have our homemade versions of cookies or banana bread on hand.
Lunch: Used to be hot like chicken and rice, but because the school only gives 20 minutes for lunch, I have started to pack healthy sandwiches or wraps. My son is already loosing social time going to the health office to get his finger checked.
Dinner: We usually grill some kind of protein and then have a carb like pasta or rice and a vegetable. For pastas, we use various kinds of flours - everything from spelt to vegetable.
So it isn't that revealing or exciting. No myths busted, or secret recipes. Diabetes is so complex to take care of, and food is a large part of that. For us, following our usual principals of healthy eating is still our best practice to deal with it.