Great?

Thanksgiving weekend was great. We had family travel to spend the weekend with us. We hosted the meal. We enjoyed leftovers, played board games and took some long walks.

Diabetes-wise? It wasn't great. The Dexcom beeped all weekend, mostly for high blood sugars. There was a 'FALLING' alarm each time we set out for a walk, as though all of the insulin delivered over the previous hours had pooled, waiting for the slightest movement to activate all at once. And there was a mysterious low after the Thanksgiving Day pie:



 

 



The leftovers are mostly gone now and the routine has returned to the usual school day schedule. Blood sugars are coming back into range.

We decided long ago, the first time we vacationed with diabetes, that special occasions warranted a loosening of diabetes perfectionism. This doesn't mean we don't correct highs and treat lows. It doesn't mean that we stop trying to count carbs altogether. It doesn't mean that we don't use the tools and tricks in our arsenal to attempt to keep things on as even a keel as possible. It simply means that we accept the inevitability of wider swings in blood sugars because of the change in routine and eating patterns. It means we take a deep breath and don't freak out over every out of range number. It means that we focus on the diabetes to the extent we need to in order to keep my daughter feeling good. Beyond that, we focus on the fun. Not medical advice, I'm sure, but it's a philosophy that keeps us sane so that we can enjoy the special occasions in life.

Which is why I can say that, despite the incessant beeping, Thanksgiving weekend was great.





Thankful

Yesterday was a good day, diabetes-wise.

Early in the day I had a conversation I'd been dreading. I needed to speak with someone from the school about diabetes accommodations specific to a high school event. It turned out to be a great conversation in which I was encouraged to clearly express my questions and worries. I was able to explain the aspects of living with diabetes which led to my concerns. The reaction I got was both compassionate and practical. I expect that, as a team, the school and our family will find just the right solution to our dilemma.

Late in the afternoon we had our quarterly endocrinologist appointment. I've mentioned before how thankful I am for our doctor and our clinic. I was, once again, grateful for wise, fresh eyes on the high blood sugar trends we're working on. We received advice delivered conversationally and with humor. And, while it partly reflected some early-fall lows, we left the clinic proud of my daughter's lowest A1C ever. I know... it's not supposed to be a 'report card. But after the amount of work we've put in to keep her blood sugar from spiraling out of control during this first fall of high school and marching band?  It felt like something worth celebrating.

This day I've described came on the tail of a local JDRF Summit I attended on Saturday. There I encountered people who don't have what we have. They have schools which won't budge on legally required accommodations like testing blood sugar in the classroom. They have doctors who don't take the time to work with them to improve their health or who, even worse, judge and criticize them. They had come to this event because they felt alone and unsupported in their diabetes worlds.

Which brings us back to the November theme of awareness...

I am aware that many families do not find a compassionate voice when they call their children's schools. I am aware that many families are fighting tooth and nail for basic, legally required accommodations. I am aware that many families don't have the time, language skills or knowledge to even ask for their children with diabetes' rights to be honored.

I am aware that there are people with diabetes in this world and country who have no means to get medical care at all. I am aware that much of what passes for diabetes care in this country is far inferior to what is offered at the specialized center we travel to.

I fell asleep last night feeling content that all was right in our little diabetes world. I woke this morning aware that there is work to be done so that more, if not all, families who live with diabetes have a shot at being as well supported as we are.

Every Day is Healthy Lunch Day

Yesterday was National Healthy Lunch Day, a diabetes awareness month event sponsored by the American Diabetes Association.  I spent yesterday morning largely off-line, so by the time I saw the e-mail inviting me to participate I was halfway through my lunch and my daughter's had been at the high school for hours.

Fortunately, almost every day is healthy lunch day in our house, so I bring you today's school lunch:



 

 

A variation on this theme goes to school with my daughter every day in our ragtag collection of reusable containers.  Today's sandwich is PB&J with natural peanut butter and low-sugar spiced pear jam. Grapes are today's fruit choice, and she'll have salt and pepper popped rice crisps for the crunchy course. The muffin of the day is apple and pear. 



All packed up and ready to go, with a note reading, "68 g." 

 

 

Hope

It's blue circle day. The symbol was adopted in 2007 by the United Nations to represent worldwide unity in the fight against diabetes. Progress has been made since World Diabetes Day's inception, including better technology, increased awareness, and more organizations at work to help people with diabetes. Those building blocks of progress give me hope.

I even catch myself thinking about the end-game for this whole diabetes thing. It's quite possible that within the thus-far elusive 10 year window my daughter will be able to go about her business with little to no concern about diabetes. The advent of a true artificial pancreas now seems inevitable. Smart insulin and other pharmaceutical advances will make life simpler and safer for people with all types of diabetes. There are an increasing number of paths towards biological cure therapies. There is a light at the end of the tunnel. I have hope for my child.

Yet for too many people that light is a mere glimmer, if they can see it at all. Parents are wondering how they'll afford the next vial of insulin. Children in third world countries are travelling hundreds of miles to diabetes clinics. Grandparents are choosing between food and prescriptions. Families are suffering physically and emotionally because they do not have access to even the most basic diabetes care: a knowledgeable physician, a glucometer with enough supplies, and the pharmaceuticals they need.

So for me the question becomes, what needs to happen so that all of us are really united in that blue circle of diabetes, so that all of us can have hope? I can't wrap my answer up in a tidy bow for you today, but I can tell you that there is no shortage of organizations at work on behalf of people with diabetes here in the US and around the world:

International Diabetes Federation

JDRF Advocacy

Diabetes Patient Advocacy Coalition

Diabetes Advocates

American Diabetes Association Advocacy


These organizations and many more (if I've left out one you feel passionately about, feel free to comment below) are finding ways to provide hope for those for whom diabetes is a hardship in ways many of us can only imagine. If World Diabetes Day Resolutions are a thing, then I resolve to find another way to be involved this year in advocating for the basic diabetes needs of all people with diabetes to be met. Everyone with diabetes deserves to have hope.

#Inspiration

Project Blue November is sponsoring an Instagram challenge for diabetes awareness month. Today's theme is inspiration.
 


What image would I post?  What inspires me in this diabetes life?

There's the obvious choice: a photo of my kid. For so many reasons she's my inspiration. Neither of us chose this path but the way she's treading it inspires me every day.

Another choice would be a photo from one of our JDRF walks.  I'd choose one with some friends in it but also with the sea of people surrounding us.  Those are the images I conjure up after a long night of Dexcom alarms. It's inspiring to know how many other people are rooting for and working towards the end of T1D.

I have lots of pictures of my 'happy places' I could use, like an ocean shot or a picture I took from my seat in a kayak. Being in these places gives me the opportunity to disconnect from the everyday and gain the perspective and inspiration I need to move forward with renewed energy.

I could post a favorite spiritual or philosophical mantra.  There are plenty of quotes and verses which inspire me to keep going even when this diabetes road gets rocky.

What about a word collage with names of people who inspire me? It would begin with my kid but also include my husband, family and friends. It would especially include our friends whose lives are touched by diabetes. It would include doctors, nurses and other medical staff who've encouraged us along the way. It would include famous people living with this disease and raising their voices in encouragement and advocacy. It would include names from the diabetes online community whose voices have kept me going on many long days. 

Fortunately, I was able to turn this into a written exercise and lay out a collection of possibilities instead of choosing just one.  But I worry that there are people out there who wouldn't be able to think of even one.

Which brings us back to diabetes awareness month and my goal of considering awareness from lots of different angles. I am so fortunate to have abundant resources in my life from which to draw inspiration. That awareness leads me to wonder what else I can be doing to help other families with diabetes to find sources of inspiration in their own lives. It takes a variety of resources to live well with diabetes: insulin, knowledge, patience, medical care, humor, adequate equipment, and, especially on the toughest days, it takes some sources of inspiration. Everybody should have at least one.

Not All Statistics Are Boring

I struggle every November to think of ways to use my personal social media accounts to raise awareness.   I've posted general diabetes facts.  I've posted symptom checklists.  I've shared bits of our story.  I've received very little reaction to any of those posts, and those who did 'like' or comment were almost always people whose lives were also touched by this disease.

Thanks to JDRF, this year is different.  The above infographic can be created by  going to this page on the JDRF website.  Type in a few dates and details and, voila: a personalized diabetes stats sheet. 

I posted this on Facebook on Tuesday and it's still generating conversation today. People are genuinely moved by these numbers.  They're big numbers, and somewhat alarming if you really look at them. These numbers invoke, in a unique way, both surprise and empathy.  She's had how many fingersticks and she never complains about it?  You've lost how many hours of sleep and you're still (usually) functional?  The people closest to us see some of it, but I imagine there's almost nobody who realizes how much sleep we lose or how often my kid has a sharp object pierce her skin.

Last November, I wrote about how awareness-raising within our small circles of friends can not only generate more personal support for us which, let's be honest, we could always use; but also how it can also create a ripple effect, raising awareness and advocacy on a larger scale.

This year I'm grateful to JDRF for providing me an extremely effective way to start several meaningful conversations about what life with diabetes is like.

Awareness?

Diabetes exists, and we'd rather it didn't anymore.  Please be aware of that.

I intend to visit the idea of awareness in a few different ways during this magical month of November. The above words, from a post I wrote back in 2011, sum up my sense that there are many different aspects of diabetes to raise awareness about and many different ways to do so. The rest of the piece is below:


I've read a couple of pieces this week discussing what the purpose of diabetes awareness month should be.  Awareness is the obvious answer, but awareness of what?

Should it be awareness that people with diabetes can do anything people without diabetes can?  No foods are forbidden. There are famous athletes, musicians, and supreme court justices with diabetes.  My kid can come to your kid's birthday party, whatever it may entail.

Should it be  awareness that diabetes is a terrible disease to live with?  It involves piercing the skin with sharp objects many times per day.  Cumbersome equipment and its related management is a constant.  Scary complications up to and including early death are real possibilities.

Should it be advocacy for a cure?  Don't cut national funding for medical research.  Allow scientists to use all the tools at their disposal to find a way to erase diabetes.  Donate to JDRF or DRI or ADA.

Should it be an increased sense of community?  Wear blue on Fridays. Make plans to attend Friends for Life or go to a local JDRF event. Blog more.

Or is it simpler than all that?  Maybe any of the above will do.  Whatever it is that means the most to me, or you, is what we should do.  The important part is not how we share the message, but that we do it at all. 

Diabetes exists, and we'd rather it didn't anymore.  Please be aware of that.