D-parents

Team Type 1 and Life With Diabetes

Friends For Life is not just for children with diabetes. It isn’t just for adults with diabetes. It is also for parents, grandparents, siblings, significant others, and friends of people with diabetes. Friends For Life is for those who need hope, who need help, and who need reassurance that anything is possible for people with diabetes, whether they themselves have diabetes or not.

Phil Southerland, founder of Team Type 1, lives to prove that anything is possible with diabetes. I’ve seen the presentation of the story of Team Type 1 several times, but Friends For Life was the first time that I’ve seen it directed to parents and caregivers of children with diabetes.

Phil started by introducing himself, and sharing the story of how he and his mom dealt with the reality of the diagnosis of Type 1 diabetes when he was a small child. I can relate to Phil’s story, as I was diagnosed at about the same time he was. I was two years old when I was diagnosed, and though doctors tried to fill my parents with hope that a cure was on the way, the reality of the diagnosis at that time, and for me at such a young age, was not as optimistic as it is today.

But Phil and I both made it, and we got to experience the Team Type 1 session at Friends For Life 2012 with one of us on stage, and the other (me) out in the audience observing how parents with the same diagnosis as our parents received about us were trying to figure everything out.

I was so happy to see the room full of orange bracelets (worn by those without diabetes). Friends For Life is ultimately a Children With Diabetes conference, and with the exception of an Adult T1 Track, it is geared primarily to children and their caregivers. For this session, I was actually the one in the room that wasn’t where I was supposed to be. Not really a surprise, as I’m rarely where I’m supposed to be, but still, it thrilled me to see so many parents who were interested in learning that their kids can do ANYTHING with diabetes.

Several of the parents in the room had specific questions for Phil about how to manage their child’s diabetes in various situations, such as while swimming, playing soccer, and other sporty situations. Something I see often with parents, especially those parents whose child is recently diagnosed, is that they want black and white, straightforward, no argument answers about how to deal with some aspect of their child’s diabetes. They don’t want it to be as “bad” as it is.

The truth of the matter is that diabetes is not black & white. It is gray, purple, green, yellow, and every other color of the rainbow. Although it has its tough days, living with diabetes is one of the best things that ever happened to me. If you ask Phil, he will tell you the same. With diabetes, you have to really know your body, pay attention to it, and as a result many people with diabetes (PWDs) are as healthy or healthier than a lot of people without diabetes. I find a lot of strength in that.

The specifics of diabetes varies for every single person. Honeymoon periods (the period of time for some recently diagnosed Type 1 diabetics where their body is still producing small amounts of insulin, which typically decreases as time goes by) last for weeks, or months. Low blood sugar symptoms show up at a BG (blood glucose level) of 110 mg/dl or 45 mg/dl, and sometimes not at all. Every single person with diabetes varies.

Phil’s best advice to the parents, and something I agree with him 100% on, is to let children become the CEO of their own body. Keep focused, but learn and let children learn from their diabetes successes and mistakes. Blame does not breed learning.

If your child has a low blood sugar, it’s not your fault, and it’s not their fault. If your child has a high blood sugar, it’s not your fault either, nor is it their fault. The same applies if you have Type 1 diabetes yourself. That is diabetes, and over three decades of living well with diabetes has taught me that it is critical to remove the emotion from diabetes numbers, such as blood sugar levels and A1C values.

It’s just data, and it isn’t telling you that you are doing it right or doing it wrong. Only a human can assign emotion to math. A blood glucose meter cannot do that. Take diabetes data with the same face value as a road sign or a traffic light: It is a cue that some sort of action needs to take place, whether that action is to make an adjustment, stop, proceed with caution, or keep going and you’re doing great!

The next time your child comes home from school, resist the urge to immediately ask them what their last BG reading was, or how they are feeling, if they need a snack, or how many carbs did they eat for lunch. Instead, ask them to tell you about the most exciting thing to happen to them that day. You may be surprised to learn that diabetes is not the most exciting part of their world, so don’t make it the most exciting part of your world either (unless you’re at Friends For Life).

Life comes first.

Friends For Life 2012

The world is full of both extroverts and introverts; individuals who gain energy and fulfillment through being around and engaging groups of people, as well as individuals who thrive better when they have time to themselves and are not as engaged socially.

There are all sorts of definitions and distinctions of what makes someone an extrovert or an introvert. You could take 20 personality tests and read the entire self help section of your local bookstore and still not have a clear definition of the two classifications for all situations.

For me, that is the kicker. I tend to sort of meander between extrovert and introvert depending on the situation. I love being a part of big groups, sharing information, having both normal and nonsensical discussions, and feel like I’m being included, if not leading the experience. However, I sometimes reach a point where I also need my “me” time to figure things out on my own and reflect, plan, scheme, and let my thoughts run wild without the constraints of appropriateness to the situation.

When I need to be an extrovert, I gravitate toward situations where chances are good that I will be at or near the center of attention. As an introvert, you can sometimes find me in a state of observation, quiet, seemingly on the outside looking in.

I’m like this with diabetes as well. There are times that I am perfectly comfortable wearing the proverbial tights and cape and ~~hooker~~ boots that make up the Super Diabetic persona (hey, it worked for Superman…don’t judge me), educating the masses about the ways of the ‘beetus, managing meals in a single bolus, calculating carb and blood sugar ratios in my head faster than a speeding bullet, and encouraging the newly diagnosed and recently overwhelmed with a healthy dose of You Can Do This.

There are also times when I don’t want to deal with my diabetes, much less try to convince other people that it is easy or that I have everything under control. Sometimes, with diabetes, it’s hard, and I suck at it. Not most of the time, thankfully, but sometimes it is overwhelming and I just need some time to reflect and figure things out.

This past week I was at Friends For Life 2012, which is this extrovert’s dream come true, yet there were times that I found myself reserved and low-key. I spent quite a bit of time listening and observing, sometimes clinging more to my introvert tendencies to try and figure everything out than clamoring for attention and putting my diabetes on stage and in the spotlight. This wasn’t my first Friends For Life, and I didn’t feel as if I was around strangers that I needed to figure out. I just wanted a fresh perspective, for both myself and my diabetes.

I really needed a week with people with diabetes. There is something extremely special about food buffets that have carb counts on them, not being looked at strange for whipping out a BG kit and pricking my fingers in public, and people that understand what a glucoaster is and are riding it all week right along with you.

Now that I’m back home, I’m putting together my thoughts on some things that I learned this past week. From all the things that can come with diabetes beyond just insulin, to amazing things that people with diabetes can do, to challenges with the FDA, observations of parents of children with diabetes, and even the diabetes online community in real life, I’ve got plenty to think about and share. But first, I need a night to rest after a week of staying up until the wee hours of the morning every night. After all, nobody goes to Friends For Life to catch up on sleep.

Diabetes Supreme

Today there is cause for people with type 1 diabetes and other pre-existing conditions to celebrate. The Supreme Court ruling confirms that people with diabetes (PWDs) will retain protection from insurance discrimination, and parents can rest easier knowing that their children with diabetes will be covered for life-saving diabetes supplies until at least age 26, when they can get their own insurance without fear of being denied because they are insulin-dependent. Sure, the Affordable Care Act isn’t perfect, but it’s one step closer to not having to fear how we are going to get that next vial of insulin, test strips, and other necessities to stay alive. We can rest assured that diabetes won’t prevent us from getting health care, because diabetes is a big reason we, people with diabetes, need health care to begin with.

Bullets: Rat-a-tat Tat

I’ve been traveling a lot lately. And working. And traveling some more. If my counting is correct, this past weekend was my 8th trip somewhere out of town in the last two months, after weeks of prepping for said travel, and I still have one more trip to go.

I’ve forgotten what weekends at home are, but if those mythical creatures still exist, I’m certainly looking forward to one someday soon. I’ve got a lot of catching up to do, and so much that I want to share with all of you that still read my blog and haven’t given up on me while I’ve been M.I.A. the past few months.

Overall, the past several months have been a success, made up of both work and diabetes, and including a lot of reading, thinking, meetings, planning, traveling, juggling, tightrope walking, backward and forward somersaults, and as much fun as there has been time for in the three ring circus that is my life these days. Here are just a few highlights:

I took a trip to Seattle, Washington for the Medical Library Association conference. I had never been that far west or north before, and it was a mind-boggling and delightful experience. Jet lag sucks though.
I attended the inaugural Students With Diabetes National Conference in May, and it was one of the most incredible three days with diabetes that I’ve had in my entire life. Ever. I’m still processing my thoughts on it, but what is being done with Students With Diabetes and Bringing Science Home is nothing less than life altering.
After working every day (and night) since the end of February to plan a statewide meeting of medical librarians, I was elected President of the Florida Health Sciences Library Association. I’m extremely proud of and excited to lead this group to some grand things for medical libraries in Florida over the next year.
I’ve finally decided that I’m all in for D-Ink. I just have to find someone who has the skill to draw what I want. Will share my thoughts on that process, which may appeal to some of you who are also considering D-Ink.
New diabetes technology is out and about, and I’m drooling over it. However, with every new invention to improve the lives of people with diabetes, there comes a list of challenges.
Traveling and eating out so much has left me still struggling with my weight…again. It’s a recurring theme, really. I wanted to be lean by Friends For Life this year, but alas, that’s next week, and I don’t see myself losing the equivalent of a toddler between now and then. I’m exploring some options of what to do about it, and trying to figure out how I can get into a routine that isn’t so detrimental to my bottom line, so to speak.
Through everything, I’m still working to stay on top of my world with diabetes. 60% of the time it works every time. Wearing my Continuous Glucose Monitor (CGM) on a constant basis is still probably my biggest diabetes challenge, for a host of different reasons.
Also, I’ve spent some time recently shepherding someone near and dear to me who is newly diagnosed with Type 1 diabetes. It has left me with a lot of thoughts about how we, both as patients and parents of children with diabetes, react to change and the news that our transmission has decided that it wants to be a “stick shift” rather than an “automatic.”

More to come on all of this, but I’m just excited to get back to writing and sharing and communicating with everyone again.

Here’s a picture of me and Sara at the Students With Diabetes National Conference. See also: Poster children for Type 1 diabetes. (You read it here first.)

Progress Takes Time

National Health Blog Post Month, Day 28: Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?

People say the darndest things, especially when it comes to diabetes. Most all of us have heard about how cinnamon can cure diabetes, how Halle Berry managed to wean herself off of insulin, and even how Chuck Norris’s tears contain the cure for diabetes. (Too bad he doesn’t cry. Ever.)

I can handle the ridiculous and imaginative ideas for curing diabetes that people in the publishing business come up with in order to sell copy and get clicks on their websites. I know, as well as they know, that they are often full of crap. Just look at the Reader’s Digest issue from a few months ago. It’s capitalism, and it’s meant to make money. We, as people with diabetes, regardless of type, have to make sure that we are smarter than the fly-by-night snake oil salesmen.

I get extremely upset with doctors who tell parents and children who are newly diagnosed that there will be a cure within five years. Or ten years. Or that it is just around the corner. I was told that when I was diagnosed at age two. That was 30 years ago. I’m not saying that we shouldn’t all have hope, but our efforts would be much better suited if we focused on living well with our diabetes (regardless of type), rather than surviving just long enough until there is a cure. What’s the point in a cure if we don’t make it that long?

If there was a cure for diabetes, it would not require me to buy someone’s book off of a TV infomercial or sign up for an annual subscription to a website. A cure would be grounded in science, and would include known experts in the field of diabetes who live with and work with this disease every single day that would be more than willing to vouch for whatever form and type of diabetes the cure is for.

I also believe that we would see it coming. True researchers dedicate their lives to finding a cure for diabetes. They don’t accidentally mix up samples and say, “Oh, wow, a cure for diabetes. How’d that happen?” So many people are stakeholders for diabetes improvements, and they have their fingers on the pulse of the research that is being done towards better treatments and a cure.

The things that I’m excited about right now are insulin pumps with low blood glucose suspend functionality. Basically, if the continuous glucose monitor (CGM) senses a blood glucose that is below a certain level, then it will automatically suspend the insulin pump for a period of time. I have low blood sugar unawareness, so this would be helpful to me to ward off severe lows, like the 35 that I had while I was at Epcot last week, and maybe even prevent me from having a low BG related seizure.

I’m also excited about CGM sensors that aren’t as invasive as what we have now. My biggest hurdles in wearing my CGM are the components themselves. I love the results, and the data that I get from it, but having to harpoon myself with a fat needle to insert my sensor and then attach a big honkin’ transmitter to it and tape it down so that it doesn’t fall off is really a burden sometimes. I remember the first home BG meters. They were huge, and heavy, and slow. Today they are tiny, and can report BG’s in five seconds, so I know we will get there with CGM technology as well.

As long as research and development is being done, and we are advocating for our needs, progress is inevitable. It just takes time.

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

Bummin’ Around

National Health Blog Post Month, Day 18: A comment as a blog post. Pick someone else’s post (from the past or from today) and write a comment to them. Write that comment as your blog post for today. Link back to them to let them know you were inspired.

Yesterday, I was reading through the “Let It Be” themed blog posts, and one really stuck out to me. Jen, over at Blood, Sweat & Carbs, wrote about the fear that so many parents have when raising a child with Type 1 diabetes. Jen’s words are real, and vivid, and I know something that every single parent of a child with diabetes thinks about, but never wants to admit. For some reason, Jen’s fear reminded me of a story that I haven’t thought about in awhile.

One morning in my early 20’s, I woke up all alone, in a strange bed, cold, in a room well lit with fluorescent lights, covered with nothing but a thin sheet, wearing only a pair of shorts, and staring at the clock on the wall above the door, trying my best to figure out when and where in the world I was. Turned out I was in the emergency room, having had a severe low blood sugar and seizure early that morning.

My dad would always call me in the mornings when he was working off the coast of Louisiana on oil rigs, and he later said that I had answered the call, but then he heard a crack and the phone went dead. The crack was my head hitting the kitchen floor. My girlfriend at the time heard the commotion, found me in the floor, and called 911.

After the ambulance ride and whatever the doctors did in the ER to get me back to good, my girlfriend and my college roommate finally invaded my room in the ER after having been told to wait in the lobby for a time. It wasn’t long before my mom and grandma, who lived an hour and a half away, also showed up. I remember being happy to tears that they were all there, and that I wasn’t alone anymore. Hospitals are scary when you’re that low. Heck, the entire world is scary when you’re that low.

It was still relatively early morning when I was discharged from the ER. I was starving, so we all went to McDonald’s to get breakfast. And who doesn’t love McDonald’s breakfast? No one. It’s awesome. Anyway…

While we were in line, a homeless man asked my mom if she could spare a few dollars so that he could get some breakfast. Thankful that I was okay, and in the spirit of blessings, my mom didn’t hesitate to give the man a bit of the cash for him to get himself some food with. The disheveled man promptly took the money and headed for the door, where his friend was waiting, so that they could most likely go buy themselves some booze instead.

Seeing this, my mom marched after him and grabbed him by the collar before he could get out the door and told him, “Now, I gave you money because you were hungry and wanted breakfast, and I just picked up my son from the hospital and we are thankful to be alive this morning. I didn’t give you money to go blow it on booze and cigarettes.” She then proceeded to walk the man to the counter at McDonald’s, as if he was a six year old boy, and made him order breakfast for him and his friend. Then she took her change back and sent them on their way with a paper bag full of hot McDonald’s goodness.

Back where me, my girlfriend, and my grandma were sitting, we couldn’t stop laughing at the spectacle of my mom making this bum unexpectedly order him and his friend breakfast. To this day, that story that started out so frightening still brings a smile to my face.

I don’t know why Jen’s post made me think of it. Maybe just to illustrate that diabetes is what it is, and it is going to throw a curveball in the direction of all of us at some point. The key is to be ready, and to be thankful for all the times that diabetes doesn’t win, which hopefully far outnumber the more fearful moments. Remember that, as a parent, it is your reaction to diabetes that your child will remember and learn to mimic, and will carry with them through life.

And also, never give a bum money at McDonald’s. Walk him to the counter and make him order breakfast instead. (Thanks Mom!)

Me and Mom (2006)

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

Unconscionable Numeracy

Last week at the 6th Annual Education Forum on Diabetes Prevention & Management conference, I witnessed clinical healthcare professionals learning and sharing about the impact of diabetes, issues from the patient perspective, issues from the healthcare professional perspective, and enough data and PowerPoint slides to make Bill Gates proud.

Two presentations really stood out to me. As a person with type 1 diabetes, or a type 1 diabetic if you prefer (you say “noo-tella,” I say “nuh-tella”), I gravitated toward those portions of the conference that I could identify with the most. I like hearing various perspectives of my particular flavor of diabetes, especially from the side of people who work with and deal with diabetes without having the disease themselves.

First, there was a presentation about numeracy.

Numeracy: adjective; able to use or understand numerical techniques of mathematics.

In other words, numeracy is the ability to understand and use numbers in our day-to-day lives. Those of us with diabetes, especially type 1 diabetes, do it all the time, seemingly without thinking because we’ve done it for so long that it has become almost habit. We can do carb and blood sugar math like it’s nobody’s business! For example, I know that my insulin to carb ratio is 1:8. That means if I have a meal or a snack with 20 grams of carbs, I’m going to have to take 2.5 units of insulin to cover it so that my blood sugar doesn’t spike and make my head explode. (Not really, but my blood sugar will go high, and I hate, hate, HATE being high.)

I loved this presentation because the presenter really linked it to the patient perspective of living with diabetes. She highlighted the fear of all the numbers that sometimes paralyze us to take action. That applies no matter what type of diabetes you have. She said, “Something that healthcare providers have to realize is that if we make a mistake in math in our checkbook, it’s really no big deal, but if a type 1 makes a diabetes math mistake, they can die.” There is not a lot of room for mathematical forgiveness with type 1 diabetes.

The next presentation I went to was awesome because the presenter was my endo. I love my endo, so pardon me a minute while I gush. I really appreciate him because, even though he doesn’t have diabetes himself, he gets what it is like to live with diabetes as well as anyone I have ever met. He was sharing with the room some of his experiences with helping children and parents adjust and learn to live life with type 1 diabetes. Having grown up with diabetes myself, since age 2, I could appreciate a lot of the stories he had to share; many of them could have been about me.

He opened his presentation by telling every single diabetes and healthcare professional in the room that “it is absolutely unconscionable what we ask people with type 1 diabetes to do to stay alive.”

Unconsionable: adjective; not in accordance with what is just or reasonable.

Yes, yes, and more YES! I’m paraphrasing here, but he explained that sustaining the constant counting and checking and pricking and poking and dosing and everything else it takes to live with diabetes is really not reasonable or realistic. He said, “Albert Einstein said that doing the same thing twice and expecting different results is the definition of insanity,” then added, “…except with diabetes.” A person with diabetes can do the same exact thing and eat the same exact foods for two days in a row and get totally different results. The best that can be hoped is that people with diabetes will do as much as they can.

Something that I’ve always appreciated about him, and the reason he is still my endo even though I am 32 years old (still a kid at heart people, don’t get it twisted!), is because of the perspective he shared at the end of his presentation. He said that in his practice, he refuses to tell a person with diabetes to “test” a blood sugar. A test you can pass or fail. A blood sugar check is just a check, returning a number that is neither good or bad, just possibly something that needs to be addressed. All these numbers that come with diabetes are just data. Just. Data.

What we have to do to live with diabetes may sometimes be unconscionable, but the numbers that we see staring back at us should never be that. We have to learn to use all of these numbers in our diabetes world to make decisions, and react to the best of our abilities.

That has to be enough.

The Day After

I’ve been perusing news articles, blog posts, tweets, Facebook, TV and radio observing the reflections of a day ten years ago when terror struck on September 11, 2001. The impact of four commercial planes full of innocent people, heroic people, and the worst kind of people who eventually saw all four of the planes through to a tragic end has left an indelible mark on me, on a city, on a nation, and on the world.

Ten years is a long time, yet, it isn’t very long at all. It seems so fresh, so yesterday, so real still. I still expect to turn on the TV and see smoldering rubble in the business district of Manhattan, a burned and gaping hole in the side of the Pentagon, and a big, dirty, smoking trench in a field in Pennsylvania. Yet, those aren’t my tragedies.

One of the tragedies of 9/11, for me, is the change in perspective. What once would have been a coincidence, a natural phenomena, or a just a freak accident is now questioned: Are we being attacked once again?

Recently there was a relatively minor earthquake that shook our nation’s capital in Washington D.C. and surrounding areas. The first thought for many people in D.C. was that there had been another attack, that something had exploded nearby, that the worst had struck again.

Before 9/11, we would have all thought that it was an earthquake…first.

Parents of children with diabetes also have this perspective shift. Before diabetes, a child acting the fool, goofing off, and just being the beautiful weird that a child can be would have been attributed to just having fun and being a kid. After diabetes, the same acts are questioned: Is his blood sugar low? Does he need a snack? Is there a reason for this odd behavior? Is this my fault?

Diabetes is its own sort of terrorist, hijacking our immune system, demanding that we be forever vigilant of how we feel, what we eat, and what we do and how much we do it from that point forward. It requires us to closely scrutinize things that we would have previously overlooked, such as being thirsty or having a headache, and question their intent and what they stand for.

Both the evil of 9/11 and diabetes have claimed and continue to claim the lives of friends, families, loved ones, innocent people, heroes, and even those that we don’t admire so much. There is no discrimination, aside from sweeping political and religious idealism that has been portrayed by the media over the years since 9/11.

The day after 9/11, we questioned everything. The day after diabetes, we questioned everything. Still, we have the day after, and that is one more day to live with all of this, and one more day to overcome it.

“Nothing we do can change the past, but everything we do changes the future.” — Ashleigh Brilliant

NYC World Trade Center Rebuild - May 2011

Rebuilding the World Trade Center - May 2011

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