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.
Monday, May 30, 2016
I went to the gym, and toward the end of the class I was taking, I suddenly felt incredibly hungry. I have not eaten beef for over 20 years now, and could almost be classified as a vegetarian, but the only thing I could think about through the last few minutes of trying to strategically balance myself on an exercise ball was barbecue brisket!
I was sweating from the workout, but I had that feeling of a cold sweat coming on. Could this be what my son feels when he is having a low, I wondered? Was I really low? Was I just hungry? Exercise usually does not have me running out the door in a manic quest for Texas barbecue!
Fortunately, I was in my complex, so in a matter of seconds, I returned home eager to ask my son to check my blood sugar because I felt low. I told him "I feel low", which is what he often says to me when he has a low.
I thought he was eagerly running off to get the glucometer, but instead he was eager to share with me what he was writing while I was away. It was incredibly awesome, but before I grabbed a juice, I really wanted him to check me to see if I was in fact low. I thought that reversing the roles somehow might make him feel better about diabetes, or not so alone.
I then followed him to his room thinking the glucometer was there. I still wanted a side of beef. Meanwhile, my husband is trying to tell me something, and my son is playing with some tape he wants to put over his mouth. Did I mention I needed a double brisket meal with potato salad and jalapeño corn bread?!
Where is the damn glucometer?!!!
Finally, it arrives. I asked my son to check my finger, but he was busy with his tape project. So I change the lancet and checked my own finger. The reading was 69. Wow! I suspected I would be a bit low as I did not really snack throughout the day as I usually do, and I had a small lunch, but wow. I really was experiencing a low.
Juice, I need juice. Off my son went running through the house trying to communicate with his mouth taped shut that I was low and I needed juice. Not sure how that was going to work as no one would expect me to be the one with the low. I reinforced the mumbled message by requesting a low carb juice from the opposite end of the kitchen.
My son brought me the juice and ran off just as I realized the straw was not in the hole. What? No straw? I was shaking a bit, and it was one of those juice bags, not a box, so I was skeptical that I could do this gracefully. I took the straw... no, I ripped the straw off the juice bag and tried to put it into the ready made hole. I missed!
After a few more attempts, I stabbed it so well that I also punctured the back of the juice bag. The straw never went in! And now I had a juice fountain in my hallway. I started sucking the juice out of the back hole of the bag, but it was still leaking out of the front! I was mostly sucking air from the back of the bag! Clean up on aisle six!
Finally, enough juice spilled onto the floor to allow me to insert the straw into the bag and finish what was left. Enter mop.
The juice seemed to helped a bit. That, or I felt so accomplished that I stabbed a juice bag with a straw, I went to shower - after which I sat down to eat immediately. I still felt like I was starving, but I must have been on my way to a normal blood sugar range as I no longer wanted to devour an entire animal. Crisis adverted.
I do not know what this all means, and I am not alarmed by a lower than normal blood sugar. It could be a fluke, or not. I'll do some checks and watch it. I'm putting it down to doing intense exercise on a day when the timing of my meals did not serve what I needed my body to do.
I am pleased that I had this mild low and I got to experience something that my son deals with every day. It was incredibly annoying and challenging. First because I could not finish my workout as I would have liked to, and I can see how as one goes lower, it can get frightening, quickly. The frustration and isolation of people ignoring you or not understanding the severity of your needs must be overwhelming at times.
I have no real message here. Just a random experience. I wish it were me instead. I am not sure I could handle it as gracefully as he does. And I am pretty sure that I have the potential to physically harm someone in a quest for good Texas barbecue. This could go horribly wrong considering there isn't really any here.
Friday, May 20, 2016
Thursday, May 19, 2016
There is so much to say about this topic that where to begin is almost overwhelming. I have experienced healthcare in three different countries and all are very different - including the opportunities for improvement. I do think that one of the biggest factors in helping patients overcome their frustration is if healthcare providers and insurance companies worked as teams - both within their separate entities and together.
Anytime I have dealt with a physician that was not part of a larger team of people with experience in diabetes (i.e. nutritionist, psychologist, nurse) much of the patients' needs are not addressed. Some doctors may know everything from a comprehensive perspective, but they do not have the time to be all things to all people. If they can be integrated with a team that can support them and the patient, it is a win for everyone.
The same can be said about insurance companies. If they cannot work as a team within their organization, the patient has a less than satisfactory outcome, and may miss out on care. If they can work on initiatives with the providers giving the care, then even better.
In 2014, I made a presentation to physicians about the patient experience in diabetic care. The premise of my discussion was how does one know that their diabetic patient is getting good care? Is it the A1C? That they are returning for regular check ups? What is the indicator?
I researched many academic articles in the quest for a holistic answer. As I kept reading, I decided to take all of those articles and create a word cloud out of them. In a word cloud, the words that are used most frequently in a document will be larger than the others.
The results were not surprising. The subject words, Diabetes and Care, were the biggest. The next largest were the words "Integrated" followed by "people" and "services".
If I could wish for one thing to improve diabetes care, it is that those three words were considered throughout the entire care process. Those words have so many different meanings and are intertwined in so many ways that many healthcare frustrations could be resolved.
There needs to be integration among services - true integration. Services working in silos is not enough. This is not really better than having no services at all because without synergy, there could never be comprehensive integration. Patients could even get conflicting treatment information in this kind of environment.
There needs to be people with the skills to do it. Yes, finding healthcare resources is a challenge throughout the world, but still a need.
The solution is not easy and will not happen overnight. For the short term, I think it is important for healthcare providers to remember what chronic means for the patient. The patient has to address diabetes several times in one day and in many ways - medically, psychologically, socially.
Focus on the bigger picture with us and not just one episode of A1C. As patients we want to leave your office feeling supported and optimistic about our future.
Wednesday, May 18, 2016
I have been fortunate enough to live abroad for almost 20 years now. The first place I lived during this time offered many unique cultural experiences, including a language barrier. English was not as commonly used as it is here in Dubai, so I got to learn another language. It also made me realize that communication is more than just words, and often words are just well, words.
It is not always easy to get your point across in a language that is not your own - especially in the beginning. It is incredibly challenging and frustrating at times. Diabetes is no different.
Diabetes is like a language, and not everyone speaks it. If there are small phrases used, or questions asked, I am not too bothered. Those people do not speak the language and are completely foreign to the life we live.
I think the general public that does not understand, or has not lived with diabetes or <insert disease> will probably not get it until they have been there. And while sometimes it requires a deep breath, for the most part I remember there are nuances within a language. This is not to disregard the power of words. I just think that once you realize the power of words or phrases in a a language, you reach a new level of fluency.
My diabetic language threshold is crossed when those who do not speak diabetic try to write verbal essays to me. Things like challenging me because they believe I am afraid of homeopathy, and they can cure my son with meditation, or they ask me if my Type 2 cat got diabetes from my son. (Yes, someone did). It is those imposing opinions and poorly written arguments with no backing that are sometimes the challenging ones.
In these cases I am okay to demystify the myth. I still try to remain calm and kind. Sometimes I am very direct about the consequences of diabetes, but I still try to use a kind tone. I have found this very effective in many cases. Or at least I felt good about it.
Perhaps to those essay writers, my responses are still just words. This is why I believe that no matter how much you educate, or change terms or rename the disease, there will still be a larger population that cannot speak the language. They do not want to learn it, nor do they need to.
|A beautiful Japanese menu, which I unfortunately cannot read!|
Tuesday, May 17, 2016
I believe my son handles this pretty well. He was quite small when he was diagnosed, so he does not know life without diabetes - both a blessing and a curse.
He has just started to experience diabetes in a social context and how some (just a few) children can be cruel. Obviously that is not good for anyone, and it is heartbreaking as a parent. However, those instances are few and far between, and if it wasn't diabetes, it could easily be another subject.
As a caretaker, I feel the mental challenges too. I do not know which one of us is more challenged because we are each having a completely different experience. But as a caretaker, it can be exhausting - physically, socially, psychologically and mentally draining.
I never really thought about it before, but I think I am selective with my internal battles now. I try to remember I have a choice of how far I want to let a comment bother me or situation upset me. Maybe it is a "unique" defense mechanism called denial, but let's face it, we cannot be everywhere at once, and that includes emotionally as well.
I believe sleep is critical to doing this. Something a caretaker does not always get a lot of. So I will try to bank a lot of sleep one night a week and get to bed super early. Then my tank is full for a few days. I often run on fumes, but it is what it is. And I would not want to miss out on anything in life - especially the good stuff.
I don't really have any mantras, but I am a fan of the Boy Scout motto, which is "Do Your Best". That is something I remind my son in challenging circumstances. If we are doing our best, then we know we are giving more than 100% on most days.
Sunday, May 15, 2016
Before I get into today's topic, you might be wondering, What is Diabetic Blog Week? Started by Karen Graffeo at the blog Bitter Sweet, 7 years ago, this annual event brings the Diabetic Online Community (DOC) together by sharing ideas about the same topic every day for one week.
Even if you do not blog, I suggest reading and following. In the last few years that I have participated, I always meet many open-minded people of different walks of life all dealing with Type 1 in various ways. Sharing our experiences always leaves me feeling a little less alone, and a little more knowledgable than I was a week before.
The first topic of the week is Message Monday. Why are we here? Why am I here? What is my most important diabetes message? Why is that message important, and what am I trying to accomplish by sharing it on my blog?
There are so many messages and lessons to be shared from diabetes and as a caretaker of a Type 1. But what is my fundamental reason for being here? To share my experience with others. Before my son was diagnosed with Type 1, I worked in healthcare management for many years. The gaps in care and patient experience bothered me - they still do.
Meaning that while I did not know much about diabetes at diagnosis, I at least had some idea of where to go, or where to look for more information. I was overwhelmed... and for a long time. Had I nor my husband not been in healthcare, I do not want to think about how much more overwhelmed I would have felt.
My purpose and message are pretty straight forward. I am here to help and advocate. I am here to help those in the medical profession understand what we deal with when we leave their offices. I am here to build a community in my part of the world. I am here to empower people with information.
While my purpose and focus may slightly change from day to day, my reason for being in the diabetic context is clear. I am here to (hopefully) make a difference.
For more information about Diabetic Blog Week, visit this link.
Tuesday, May 3, 2016
However, I still cringe sometimes when I hear diabetes described as a disability. While I do not wish to start any heated debates, I do think it is worthy to reflect on sometimes.
These thoughts are not about me not accepting my son's condition. I just feel that diabetes is one of those conditions that is not as severe as say cerebral palsy or other diseases that seem much more challenging than the cards we have been dealt.
Enter this week's Boy Scout topic - Disabilities Awareness. The requirement was to learn about disabilities - including invisible ones. My inner mom voice wondered where this would go.
My son does not see himself as disabled - and diabetes has not interfered with him doing anything he wants to do. I am (perhaps overly) cautious to ensure that his dreams and imagination continue to grow without ever seeing diabetes as an inhibiter. Not that anyone in this group is going to call it out intentionally, but kids are kids, and they perceive things in many ways.
After sending a lengthy WhatsApp response to a message asking if we had any concerns about the agenda for the topic, I made sure to take a few hours out of my work day to join the meeting. When it came time to discuss invisible disabilities, one boy offered that he was dyslexic. All the boys were so tentative and as they are at the age where they are just becoming independent readers, they showed a lot of empathy.
Another boy then said it. "Diabetes". He said it twice. It was not in reference to my son, but when he said it I held my breath. Were my worst fears about to become true. My son's psyche crushed for the rest of his developmental years?!
I looked at my son, and I could tell he had not perceived of diabetes as an invisible disability. It was a bittersweet moment. He wasn't sad, but at that moment he may have seen diabetes differently. I had probably already freaked out the parent who worked so hard on putting the day's agenda together with my warning flag message, so I somehow remained quiet as I waited to see if it escalated.
It didn't. Instead, when asked about diabetes, my boy scout owned it. He explained in great detail what it was, how he manages it, the needle and catheter for his pump insertion site, highs and lows and more. He was confident. I was proud.
The other parent who helped manage the event did a great job of making each and every boy who shared a personal challenge feel accepted and safe.
And the moral of the story was we all have our differences and challenges. And whatever they may be, we are still the same inside. We all have a heart and feelings. Therefore, we should be kind to everyone and be inclusive.
They all agreed... Then couldn't wait to get out and run around on the playground!
Sunday, May 1, 2016
I still perfect my art to think like a pancreas and predict blood sugar while balancing a tight rope, juggling fire balls as I whip up the perfect soufflé.
Armed with information, some days I still feel like I need a magic 8 ball when the school nurses ask me how they should bolus at the next blood sugar check. As awesome as they are, even the three of us cannot crack the code sometimes. No two diabetics are alike, and for the same diabetic, no two days are alike!
I continue my open door policy around advocacy and education. Just last week someone asked me why I had not tried homeopathy or ayruvedic medicine to help with my son's diabetes. It was a naive question. This person had good intentions. However, she asked me if I was afraid of alternative medicine.
Ha! Little did she know I am a huge fan of acupuncture for myself and other alternative therapies. Despite our life with needles we hate, the irony of how relaxing other needles are is crazy. What I do fear is the reality of sending my child quickly into DKA if I actually took him off insulin and relied on an alternative treatment.
So for any of you spammers out there that post the latest and greatest cure in my Twitter and Instagram account with your cute cat pictures, I am not falling for it. For my friends who send me miracle cure links in WhatsApp, be sure - be very sure - if there were an alternative medicine cure for Type 1, I would not be writing this.
Between the crazy questions, the compliments still make me very proud. The latest was about how well adjusted my son is. He is only eight, and was diagnosed so young that he was robbed of a carefree life "before" that he remembers.
This has enabled us to be matter of fact about diabetes and just get on with it. Which is what I love about him. Diabetes just is. Yes, we have our challenges, but we deal with it. It does not stop him, and I am not planning to let that become a thought.
We are also learning about new ground in the social scene with D. For example, some mild bullying at school. It is heartbreaking to watch as a parent, but sadly these things could happen even without D. Life's lessons are not always fun.
This one offers no random cure, and she has diabetes herself. Type 2. She is doing well, and I have even impressed her vet at my amazing ability to adjust her insulin needs correctly according to her weight. I can't imagine where I got that idea from!