I’m always rooting for my peeps. If you have diabetes, I’m already a friend of yours because I think that all of us have a seriously sucky job that no one signed up for. And I’m especially a fan of thriving with this this disease, and doing the best we all can to stave off those dark and looming complications.
So when a friend of mine with diabetes posted about her recent eye exam and happily reported that 10 years in to living with diabetes her doctor had found no complications, I was surprised to find myself feeling…something other than happy for her. I mean, I was definably happy for her on one level, but I also felt…jealous? Angry? I’m not really sure what the emotion was.
All I know is that I realized that I too used to be in the “complication-free” category, and I had managed to keep that status for two decades. But it was in my 20th year of living with T1 that a doctor first noticed a speck of retinopathy in the back of one eye. And two years later it was tiny specks in each eye. Seeing her post felt so defeating in a way, because even though I am trying my damnedest to take optimal care of myself with this disease, you don’t get points for trying with diabetes. The truth is that many of us who maintain a good A1c and put in a ton of effort will still wind up with some form of complications. To say that diabetes is a bit unfair would be the understatement of the year. How about unfair, not motivating, un-inspiring, and total bull$&%*?Yeah, I think that sums it up a bit better.
Of course in my heart I am so happy for my friend, and I will always be on Team Kick Diabetes Butt. But as my tenure with this disease grows, it can be hard to reign in my resentment over working so hard and still being punished for it. These are feelings I know I will always have to deal with, and I am certain they will intensify when Jacob and I have children one day and I then layer a whole new slab of Diabetes Guilt on things. It surprised (and horrified) me that I could feel anything but happy for my friend and her complication-free status. Although I know that was the diabetes voice talking and not the real me, I felt ashamed for even letting it cross my mind.
Do you all ever feel jealous when someone seems to be doing better with their diabetes than you are in the moment? And do you let yourself feel it or do you shovel it under the carpet?
It was another long, hot, summer day in Portland and the neighbors had created an impromptu block party on one of their porches. One of our neighbors offered a fellow from down the street a second beer, but he politely declined.
“Nah buddy, thanks but I’m trying to get healthy. I’ve been focusing on eating better, drinking less, and working out more. I saw the doctor a few weeks ago and he said I’m pre-diabetic. Pre-diabetic! Can you believe that?! I kinda freaked out about it. I mean, I never thought I would ever hear that from a doctor. That really hit me hard. But, I’m really trying man.”
It’s hard to convey the underlying sense of urgency and panic that loaded his words, but it was clear that indeed, this had truly hit him hard. He went on to talk about the fact that he didn’t realize that he had gotten so unhealthy, and that he didn’t realize that a diet of beer and grilled steaks coupled with a sedentary job could be the recipe for Type 2 diabetes at a relatively young age. He had always associated it with those who were very old and very overweight.
I didn’t chime in and let him know that I also have diabetes, but that mine won’t be solved with a healthier diet and more activity. I wasn’t in the mood to explain that mine was caused by an inexplicable and irreversible assault on my beta cells, or to get into specifics in that very moment. I did offer words of support for his healthy lifestyle changes and let him know that just about all of us are capable of doing a little better with the food and exercise thing, and that a wake-up call from a doctor can be a blessing.
What was so refreshing about his comment was that this was a person who truly realized he had a opporuntity to intervene. He had taken to heart that he was in the “pre” stage and that he had time to turn it around for now with lifestyle changes. And interestingly, I also found myself feeling a twinge of jealousy. Why does he get the kind that might not last forever? Diet and exercise only? If that was the case for me, I’d be living on the treadmill with nothing but carrots and chicken breasts for meals. But I also realize that it is because I truly know the burden of insulin-dependent diabetes that I can even feel that kind of jealousy for someone who’s got options.
But mostly, I was stoked for him. Stoked that he had a chance to intervene, stoked that he wanted to intervene. Although it’s not awesome to get that news, it is awesome to actually do something with that news. Too often with both Type 1 and Type 2 diabetes we don’t hear about people taking action until something really bad happens – a hospital visit, a wound that won’t heal, or maybe something even worse. And the bottom line with diabetes – whichever kind you have (they all suck by the way) – is that our only job is to get up every day and try and “do better .” That is, actually, good enough, and all anyone can ask for.
On those hot, sweaty summer days, your devices might have an extra challenge staying stuck to your body. And on those hot, sweaty summer days where you are CLEARLY suffering from insanity because you said “yes” when your friend asked if you wanted to go to a hot yoga class on a day that’s already over 90 degrees then you really have an adhesive problem heading your way.
That’s exactly what happened on Tuesday night when my friend invited me to a hot yoga class (for those who haven’t heard of it before, hot yoga is regular yoga done in a room heated to 120 degrees. “Sweating profusely” doesn’t begin to cover it. It’s supposed to help you stretch out your muscles more and blah blah blah but I just like it because I think I lose like, four pounds whenever I go. Also, if I don’t go to yoga, I don’t do much stretching on my own which is bad for my now-over-30 body. Ug.) I obliged to attending the class, but I knew both my CGM and my pump would need some extra help staying stuck on me.
I reached for my go-to solution in this case, Opsite Flexifix tape. I love this tape because you can order a huge roll for $20 on Amazon. It goes on and stays on completely clear, but it has grid lines that peel off so you can cut off a straight little piece from the roll. It’s flexible, comfortable, doesn’t irritate my skin and works like a charm even through swimming, surfing, and sweating like a linebacker in hot yoga classes and beyond. One strip across the top of my CGM sensor and two little strips across my pump adhesive were all I needed to power through that class.
With a little Opsite, I can concentrate on holding tree pose for longer than three seconds instead of if my pump and CGM are melting off my body. And trust me, when I go to yoga, I need all the concentration I can get!
“So, what if you just eat only meats and green vegetables and no sugar and no carbs? Do you still have to take insulin?”
This is the totally fair, totally logical, but still totally exasperating question I was asked at brunch on Sunday. Not exasperating because of the person who asked it. No,he’s a good friend who is well versed in nutrition, a brilliant medical consultant in his own right, and an endurance athlete who understands physiology quite well.
And guess what? Diabetes is still confusing to someone like him. That’s because this is a confusing disease to explain in general. Think about it:
So, what is diabetes?
Having diabetes means I don’t make any insulin, which your body needs to break down food into usable energy.
So you take artificial insulin?
So can you eat whatever you want?
So why are you downing that Coca Cola right now like there’s no tomorrow?
I took too much insulin by accident, so now I have to bring my sugar levels back up.
So sometimes you have to eat sugar?
No, it’s not.
But wait, you said earlier you didn’t want any cookies, I thought you just said that having diabetes means you have to eat enough sugar?
If you were naive to diabetes, can you imagine how hard it would be to take away a main, overarching concept from a discussion like that? Too much sugar one moment, too little the next. One minute we’re totally ok with a slice of birthday cake, the next minute we’re throwing out the diabetes excuse to refute mashed potatoes. Who can keep up with all that? I’m the one who has diabetes and it barely makes sense to me some days.
Sure, we all like to think we have a science behind every diabetes management decision we make, but do we really? Or are we just really trying to keep the balance between lows, highs, and having a life in between? Having diabetes means you are trying to recreate something that the body does as automatically as breathing, and we all know the human decision-making process is no match for the work of art that is human physiology. Still we try, and we try to explain it to those around us in a way that makes it easy to understand. But the truth is, living with diabetes is complex and layered, and as confusing as all get out.
Sometimes, I just want to play in to every stereotype I’ve ever heard about diabetes and when someone asks me why I’m eating this or not eating that I can just say:
“I got the sugars.”
I’ve had some great A1cs in my life, and some really crummy ones. And most of the time, when I’m under 6.5%, it’s because of hard work and determination. But there are other ways to get to a low A1c. We can’t ever forget that A1cs are simply an average – meaning a great A1c can easily be composed of some really high highs and some really low lows. One of my best A1c’s in recent memory was from 2009 after I ran my first half marathon – it was at 6.1%, and between all my running and my great low number, I should have been feeling amazing.
The only problem was, I knew I had gotten there from seriously wild swings in my BGs. Training for my first half was one long episode of trial and error, with an emphasis on the “error” part of that equation. While I figured out basal rates and nutrition, I regularly ended runs at over 300 mg/dL because of overdoing my carbs, only to later crash into the 50s because I hadn’t adjusted for the latent effects of my exercise. All in, it got me to a nice low A1c, but the spaghetti-string mess on my CGM download was enough to prove the way I had arrived there hadn’t been pretty.
Fast forward to 2014 and training for my third half marathon. Things are way smoother than five years ago but I still see glimpses of those wide swings. Sunday’s seven miler had me coasting between 80 – 110mg/dL until mile five, when I saw the CGM arrow tilt downwards. I downed a packet of GU and smiled when the arrow righted itself a few minutes later. But an hour later, it was double arrows up, 164 mg/dL, and didn’t quit until I was well over 200. Hours later, I almost crashed, but stopped a low at 100mg/dL thanks to my CGM and a snack of an apple and a handful of blueberries. (Side note: it always feels better when you catch a low early enough to treat it with fruit, not straight sugar from something not-so-good-for-you, right?)
Exercise is by and large great for your diabetes management, but endurance training takes things to the next level. Small doses of insulin can become tidal waves, and food planning can become more confusing than ever. Although I’m still not perfect with my training and ‘betes management, I’m grateful for the tools I have now to guide me. A temp basal rate and a CGM can be the difference between a great day and a day spent on the Glucoaster. And the difference between an A1c made out of 100s instead of one made out of 50s and 300s.
That’s all. Literally “bananas” the noun and also the euphemism for “drive me bats%$* crazy. I bolus for them. I eat them. Things fall apart. And I know SO MANY people with diabetes who love bananas! They’re easy to bolus for! they claim. Lies.
Here is 15 minutes after eating a medium banana, for which I bolused three units.
And here is exactly 40 minutes later. What. The Eff? Bananas. Ug.
You know how awesome that feeling is when you finally reach a goal that you’ve been trying to get to for SO LONG? It’s awesome right? You’re all doing a double fist pump in the air and like “Hellll yeeeaaaah I made it!” That’s how I felt when I hit my A1c goal of being under 6.5%.
But I totally forgot that with diabetes, it’s not enough to hit the goal. Nope, now you have to figure out how to stay there. Like, for a long time (by that I mean forever). And that, my friends, is not easy. Because you see, getting myself to that goal required major efforts, concentration, high BG stalking, and tons of lows. And all of the effort can lead to one major case of Diabetes Burnout, which is the where my head space has been for about two weeks. I’ve been training for my half marathon which has caused some wide swings in the old BG department, as well as trying to lose a few pounds I’ve put on while getting my said stellar A1c. And all of it – diabetes included – has made me feel like one big glass of Totally Over It with a side of Give a Crap.
I have always said that the strength we find in having diabetes is not about the painful injections or the sore fingertips from sticking yourself. The strength you need to live well with diabetes is the strength to get up and do it all again – over and over for the rest of your life. That’s the real challenge we all face with diabetes. And there are times – especially after putting in a highly concentrated effort for a while – that you mentally feel like “I just…can’t. Not today. I cannot.”
But the thing is, I know that I can. I have before and I will again. I’ve literally gone years with an A1c under 7% before, so there’s no reason I can’t keep things under 6.5% for a while as Jacob and I start thinking about starting a family (no, this post is not a hint that I’m pregnant! That will be a totally different post and you all will know I mean business!). The challenge is in finding the strength to keep going when that’s the last thing you want to do.
I might be training for a mere half marathon in real life – but life with diabetes is the Ironman of chronic illnesses. I’m looking to make the podium – are you?
Here in glorious 2014, there’s a whole LOT of stuff for diabetes that I wish I’d had around as a kid: My CGM for one, my tubeless insulin pump for another. And oh yeah –rapid-acting insulin would have really made a difference during those cupcake-fueled slumber parties circa sixth grade.
One thing I know for sure was missing were the right words to say from concerned friends and family members upon my diagnosis. There was a lot of muddled “I’m sorry to hear that” and “Will she be ok?” type of commentary. But really, all you want to hear when you’re diagnosed is that this disease sucks, but it will not change who you are as a person, and yes, you are going to be totally fine.
Other people in this wide world of diabetes wished they’d had this resource as well, namely my new friends Nene Adams and Corrie Kuipers who have been designing greeting cards for people with diabetes.
Yes, that’s right folks, we’ve got our own genre tucked under the “Get Well Feel Better” section of cards (side notes: interesting they file this under “get well” (because you can’t), but I guess where the heck do you put it? Under sympathy? Like, sorry your pancreas died, glad you’re still here? That might not fly. Anyways.) My personal favorite features a robot with a nod to the fact that those of us on pumps are a little bit more bionic than your average bear
I am so pleased to have Nene Adams and her partner Corrie Kuipers showcasing their cool cards here today, which you can purchase here. Thanks for what you are doing Nene and Corrie! We could all use a little encouragement with this disease now and again.
My name is Nene Adams and I’m a Type II diabetic. My partner, Corrie Kuipers, and I have been designing and selling greeting cards (http://www.greetingcarduniverse.com/corrieweb) since 2007. Three years ago during an illness, I received a diabetes diagnosis. While researching the disease, I was surprised to find very few greeting cards for diabetics, especially children and teenagers. According to the American Diabetes Association, 25.8 million adults and children in the U.S. have diabetes. Corrie and I felt the need to create positive greeting cards addressing issues like insulin pumps, body image, lifestyle changes, feelings of isolation and other concerns.
We invited other uniquely talented artists – Doreen Erhardt, Sharon Fernleaf and Betsy Bush – to join us and make one of a kind greeting cards for people with diabetes.
Doreen Erhardt – http://www.greetingcarduniverse.com/SalonOfArt
Betsy Bush – http://www.greetingcarduniverse.com/dragonfiregraphics
Sharon Fernleaf – http://www.greetingcarduniverse.com/SFernleafDesigns
If there’s a child or teenager (or adult) who’s been recently diagnosed with Type I or Type II diabetes in your life, send them a “hug in the mail.” A little encouragement and a colorful greeting card will go a long way toward making them feel better about themselves.
That moment on Sunday, July 6th when you ran six miles the day before and kept your meals super duper low carb for the past 24 hours and you realize you haven’t bolused AT ALL since noon…noon on July 5th, that is. As in, more than 24 hours ago…
Wowza. That whole “latent exercise effect” really means business! And yes, you can also see that I somehow, with no bolus on board, managed to still get a low of 40mg/dL! Who needs insulin when you’re training for a half marathon?
I’m not really sure why I ask questions like the one I’m about to ask because the answer is usually “diabetes makes no sense,” but here it goes anyway:
How is it that lows of comparable numbers can present so differently? You know what I mean? Like you can have a 54 that you barely notice, and your only symptom is “tired,” and then a day later you can have a 55mg/dL that has your dripping in sweat, the room spinning, and you tackling the refrigerator like a linebacker on Super Bowl Sunday. And don’t get me started on the random ones where you have symptoms that are just weird anomalies that you’ve NEVER had with a low before. Like the time I started crying for no reason on a training run with my best friend:
“Lex! You ok? Wait why are you crying, do you hate this run?”
“Um I don’t KNOW!? I’m just crying? I don’t hate this run…I just…”
“Are you low maybe?”
Yeah…about that one. That had never happened before and has never happened since (and PS – thank goodness my friend was there! I didn’t have the foggiest clue about why I was crying, she nailed it! Diabuddy).
But seriously – does anyone know why low symptoms can be so different from low to low? Even at comparable numbers? How does the body decide if this is a creep-up-on-ya-with-no-symptoms low or a HOLY HELL I WILL RIP THAT COOKIE OUT OF YOUR MOUTH type of low? Not that I’ve ever done that last one…ahem.