Perspective

Why You So Stubborn, Diabetes?

I think of myself as a typically optimistic person, especially when it comes to my diabetes, because really my life with diabetes is better when I’m able to cast it in a positive light. Even so, that doesn’t mean that I don’t spend a few days in the trough of a wave every once in awhile.

Today was one of those days. I didn’t sleep much over the weekend, so this morning I got up early and fed the dogs and then decided I would try to sleep a little bit longer, considering it was Sunday and all and I didn’t have to go to work or anything. About the time I got comfortable, some masochist with a lawnmower decided that 8:00am was a fine time to mow the grass next door. Seriously, how do you get up so early on a Sunday and think, “I’ll go mow the grass this morning.” Read the paper and have a cup of coffee for Pete’s sake. Have a whole pot if it tickles you. Just don’t go outside and crank up the mower and wake up the neighborhood! </rant>

I like to make a big breakfast at least one morning on the weekend. I’m doing good to get dressed and get to work on the weekdays, so Sunday mornings are my time to pause and enjoy the thrills of a pot (or two) of coffee, eggs, sausage or bacon, and Meet the Press with A-Flizzle. If you ordered that meal at Denny’s, it would be a Grand Slam Nerdy, and could you leave a carafe of coffee on the table please?

I found a little bit of Bisquick left in the fridge, which is weird because most people put that in the pantry, but I decided to use it up and make a couple of pancakes. I limited myself to just one pancake, the one that came out looking like it had been put in somebody’s pocket instead of in the skillet, because I didn’t want my blood sugar to go through the roof or anything crazy. And it didn’t. It just hovered around the stinkin’ penthouse suite all day long, making me real frustrated because it wouldn’t come back down to the lobby where all the normal BG’s hang out.

That was the only starch that I had on the day, and I hovered around 200 mg/dl all day long. Being used to running a BG of around 100 lately, I felt that 200 in full effect. I even resorted to rage bolusing, just throwing a max amount of insulin at it to try and get it to budge. We went to see Hunger Games with some friends, and I barely touched the popcorn. Then we went to dinner afterward, and I couldn’t even eat because I was so nauseous and thirsty from the stubborn high BG. Finally, after I got home and gave up, I started to sink back down to normal again.

Stubborn CGM

I ended up having to take over 100 units of insulin today to combat diabetes. That really, REALLY frustrates me, considering how a normal day for me (with carbs) is closer to 60 or 70. In hindsight, I shouldn’t have eaten that pancake, but there was no way of knowing that it would have been so stubborn all day long. The beauty of the conundrum is that it might not have even been the pancake. It could have been that my insulin lost its potency, or that I’m fighting off a virus of some kind, or that I was wearing green today instead of blue and my diabetes was offended. In other words, who knows?

Some of you may be reading this and thinking, “Wow, he’s got the diabetes real bad.” You may be thinking, “He really isn’t taking care of himself having to dose that much to get his blood sugars to cooperate.” You might even be thinking, “I would have been pissed too if that guy had woken me up with that damn lawnmower!” Or you might just be thinking, “Yup, been there, done that.” I’m convinced that some days diabetes has a mind of its own and does whatever it damn well pleases, regardless of what we try to do to “control” it.

Fighting back the tears, I was telling A-Flizzle about how frustrated it makes me when I feel like I have no control over what my body and diabetes has decided it wants to do. I hate feeling like I’m just strapped in and along for the ride, wherever it may take me. That is why I have the CGM, why I check my blood sugar on average 6-8 times a day, and why I try and count everything that goes in my mouth so that when I do make a mistake, hopefully it isn’t a complete disaster.

This situation is a good reminder to myself that we can do seemingly everything right in our lives with diabetes, from correct carb counting, insulin dosing, BG checking, and everything else, and yet we can still have those days where all of the pieces just refuse to fit together.

Tomorrow is a new day, with a new inset, and a fresh reservoir of insulin in my pump. So bring it beetus! I’ll be your Huckleberry.

Twitter Fail Whale

Working Through It All

I’ve been busy lately. Extremely busy. Too busy. I’ve been doing all kinds of things, but without divulging my Dead Sea Scroll-length laundry list of things to do, suffice it to say that I’ve been working really hard at just trying to keep up.

From being so occupied lately, I’ve developed a bad habit of setting aside important things that make me feel better and happier, like writing on this blog and being an active member of the Diabetes Online Community (DOC), exercising, reading for leisure, getting enough sleep at night to not feel like I’ve been hit by a truck the next morning, keeping in touch with friends I care about and miss (both online and offline), and in some ways even my diabetes. I feel so out of touch, missing invites to events that I would have loved to have been a part of, missing news, and even missing out on the jokes. And I LOVE a good joke. Speaking of which, has diabetes been cured since I’ve been M.I.A.?

In addition, I can’t seem to get anywhere with my New Year’s goal of losing some weight, which just adds to my frustration. Most days I find myself completely worn out by the end of my work day, and I come home and grab the carb-heavy easy foods and try to cool my jets instead of grabbing my gym pass, the iPod, and a water bottle. By the way, I need a new iPod Nano if anyone is feeling particularly generous. No, seriously. Anybody? Bueller…Bueller…

My bicycle is sitting in my laundry room collecting dust, the spokes wrangling wayward dryer lint, taunting me each time I do a load of laundry. I can hear it whisper, “Psst! Hey, fatso! Wanna go for a ride?” My swimsuits, from board shorts to triathlon training gear, sit in the bottom of a drawer just waiting for me to slim down enough so that I can fit into them and get back into the pool without it looking like the Twitter fail whale retired to the local YMCA. Thankfully, my swimsuits know better than to make any snide comments in my general direction. I’ve already threatened to give them to the dog to play with if I hear one snotty remark out of them.

Twitter Fail Whale

I know that I’ve been missing online. I know that I’ve missed being online. I also know that sometimes there is just no extra time for much beyond the things that absolutely must be done.

So what the heck does this have to do with diabetes? Last weekend, Jacquie, her husband Bob, and Sara spent the weekend visiting with A-Flizzle and I, and it really helped me to remember what I love about our community of people. It ended up raining the entire weekend, but I still loved that we all got to hang out and spend time together. When you can hang out with people and do nothing and still have fun doing it, you know it’s a good thing.

We are so much more than just people with diabetes. We are friends, even family. I get a text from Jess late at night for no reason but to ask how I’m doing, and I smile. Sara walks in the door with a hug and says, “We’ve missed you!” and I swallow that little lump in my throat and change the subject really quick. Bob (not to be confused with Jacquie’s Bob) sends me a Twitter mention from somewhere in the middle part of the country and it reminds me that I’m missed, and I’m not alone, even when I feel like I kind of am.

I’m working through a lot of things right now. I’m processing a lot of change lately. Don’t take that negatively, a lot of the change I’m dealing with is amazingly good change, but it’s still change, and by nature we human beans are change resistant.

I know I’m dealing with a bit of depression too, but I’m not willing to truly admit it to myself. I tell myself I’m too busy to deal with that right now. I’ve got a lot going on internally about external influences, trying to process my own feelings about some things that I’ve been dealing with for awhile now, while trying to manage my anger and hurt levels on an almost daily basis.

I really have a lot on my plate with work and trying to get my career as a director of all things awesome to the next level. I also long to be a bigger voice and presence in the diabetes community. Something that I use this blog for regularly, and something that I’ve somehow veered away from, is making people laugh. I love to make people laugh, and I want to be able to laugh too. Laughter is a ginormous part of who I am, and I need it.

I’m overwhelmed with the sheer amount of things that I feel like I have to do, that I want to do, and that I need to do. Regardless, I am trying my best to work my way through it all, or at least get things to a manageable level of stress and outstanding items so as not to be so neurotic. If you don’t hear from me, or reach out and get only silence in return, don’t fret. I got the message loud and clear, and I appreciate it more than words, and I’m working my way through everything in an effort to find my way back to you all.

Cough Drops

One Flu Over The Cuckoo’s Nest

Today is the fourth (or is it the fifth?) day of the flu. Or maybe it’s a cold. With fever. And sniffing and snorting. And a lot of coughing and inability to catch my breath. And not enough energy to last through the entire day. And having to call it at night at 9:30 on a Saturday night while my girlfriend and friends have enough energy to carry on through the evening. (Frustration…I haz it.)

Yeah, definitely the flu.

Being sick on top of living with diabetes is like being stuck inside a dark room with all of your senses scrambled up and not able to rely on any of them for worthwhile information. Nothing is as it seems.

For example, last night before bed I felt high. Dry mouth, thirsty, lethargic, just an overall sense of blah. BG check = 60. Definitely NOT high.

This morning, felt high again. Same symptoms. BG check = 49. Nope, not high then either.

(Side note: I sure will be glad when my Medtronic order goes through and I get my new CGM sensors.)

A-Flizzle and I went to see a musical show last night called Into The Woods. I thought after three days of riding the couch that I would be fine to go to a show. And it was a great show too, and the community musical theater near us did a phenomenal job. The first half of the musical, I was fine, enjoying the show, doing my thing. Then the cold meds wore off. During the second half, I had to escape out into the lobby at one point to have a coughing fit. Sugar free cough drops managed to hold the coughing somewhat in check until the audience applauded at the end of a song, when I was able to cough freely for a few seconds and mask my upper respiratory conundrum by the claps and hoots of the crowd. Thank goodness they were a lively audience!

By the way, sugar free cough drops have the same effect of all that sugar free candy we discovered when we were first diagnosed with diabetes and ate too much of, except they help you not to cough as much. But if you do cough, watch out! Just FYI, in case you ever need that tidbit of information.

Cough Drops

I hate having a million things to do and not having enough energy to actually do them. I’m trying to rest, and ignore the fact that I have three days (and probably 300) work emails to do something with on Monday, since I was out half of the week last week. I’m trying to stop looking around my house at all the things that I need to do, regretting that the three days I was out of work couldn’t have been spent on something more productive than laying in bed and trying to stop shivering.

I wonder if this whole being sick thing was because I actually got bombarded by germs, or if it was because I have been pushing myself too hard, trying to do too much at one time. How much of it just happened? And how much of it was my own dang fault? And why were all those fairytale people obsessed with wandering around in the woods at night anyway?

Maybe I shouldn’t blog while taking cold medicine.

Fortune cookie - Depart not from the path which fate has you assigned.

Fortune of Fate

The other day I had a hankering for Chinese take out. Sure, it might not be the healthiest food of all the choices out there, but sometimes you just have to indulge. For the record, I did make three meals out of my dinner order, so at least there is that.

The wonderful thing about Chinese food is that, after you are done, you get to fumble around in the butcher quality brown paper bag that the food arrived in, contorting yourself just so in order to avoid the mangled construction grade staples threatening to open up your house fried rice infused arteries, and find the most magical and sage of all desserts: The fortune cookie.

I like it when my fortune cookie tells me something gratifying, like “We’re renaming soy sauce to awesomesauce in your honor” or “You put the POW in kung pao chicken.”

Sometimes though, my fortune is a real miss…

Fortune cookie - Depart not from the path which fate has you assigned.
Normally when I get a bogus fortune, I just shrug it off and throw it away and don’t think about it. After all, not every fortune cookie is created equal. This one, however, was discovered to be filled with commentary.

The notion that life is on rails, and that the future is set in stone, has never sat well with me. My science mind refuses to accept that all of our paths, as complex and unique as we are, are pre-planned.

Take diabetes for example. As I sit here writing this, there is absolutely no way of knowing what my blood sugar is going to be with certainty at this same time tomorrow. I can guess, and due to my repetitive behaviors when it comes to living with my diabetes, I can make an educated prediction, but that isn’t fate. Fate would say that tomorrow, at exactly 10:07 a.m., I am going to have a low blood sugar and require someone to fling jelly beans in my general direction as if they were feeding an animal at the petting zoo. Fate would say that I am on a path toward that silly spectacle of a low, and the best I can hope for is that the jelly beans are buttered popcorn or watermelon flavored, which is much more desirable than the mothball or earwax Jelly Belly recipes.

The flip side of that coin is that maybe my fate IS to depart from the path that I have been assigned. Maybe the new path is indeed my fate, and the other path was just a ploy to make me think that it was what I was supposed to be doing. Maybe by writing this blog post, I avoid the 10:07 a.m. low and allay my fears of biting into a vomit flavored Jelly Belly in order to survive a sneaky low. If you think about it too hard, you end up flopping around in the floor with a perfect blood sugar and your brain all twisted into the shape of a plate of lo mein.

I guess what the egg drop soup boils down to is that the only fate we have is what we make of the decisions we encounter today. We use our best judgement to make the best decisions that we can, and then we react to the outcomes as they may be. Nothing is guaranteed, good or bad, and nothing is written in stone.

How we are doing with our diabetes today does not in any way dictate our tomorrow. Our choices determine our fate, not the other way around.

Numeracy

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.

Numeracy

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.

Stop Diabetes

Resolved

Last Friday I had the privilege of attending the 6th Annual Education Forum on Diabetes Prevention & Management in Tallahassee, Florida. Throughout the day there was talk about all of the various types of diabetes and their differences, along with the growing number of diabetes diagnoses, the obesity epidemic, the lack of education about the beneficial impact of fitness on the human body, and other topics.

One discussion panel consisted of diabetes educators from rural areas, mostly working with their local health departments rather than a diabetes center of some sort. Each of the professionals shared what their communities were doing to educate people who are at risk for Type 2 diabetes, to help those with any type of diabetes to get the resources that they so desperately need, and to help them navigate the often confusing world of healthcare.

One of the panel members, like so many others that took to the microphone throughout the day, spoke about her personal connection to diabetes and how important it is to her. My ears always perk up when I hear someone sharing their diabetes story. We all have a unique diabetes story, and we find common ground in our shared experiences in living with diabetes on a daily basis.

I heard this panel member trying to share her connection with diabetes from her rural perspective, and her view of the importance of education and helping people to learn the skills they need to effectively live with diabetes. She said, “I understand, because I used to have diabetes, but mine has been resolved. My husband still has diabetes, so it is very important to me.”

I looked up from my iPad, where I was taking notes, and probably had a look of “Huh?” written all over my face. “Used to have diabetes?” I’ve always been taught that there is no cure for diabetes, regardless of what type you have. Sure, there are options if you have Type 2 diabetes, including lifestyle changes and medications, but you still have diabetes even if you are able to avoid medications. Diabetes is a progressive disease, and you have to stay on top of it in whatever way works best for your unique situation. They don’t say “your diabetes may vary” for nothing. For Type 1, there is far less gray area for lifestyle adjustments: Insulin or death, pick one.

At first it agitated me that this woman, a diabetes educator, a representative expert on diabetes in her rural community, was proceeding and educating others with the presumption that diabetes was something that could be “resolved.” To me, that implied that diabetes was somehow the fault of the patient, which is not always true, and certainly is not a fair assumption without looking at many other aspects of the individual’s health. Initially, it felt to me like she was blaming her patients for having Type 2 diabetes, which I do not agree with.

Blame does nothing but remind someone of the circumstances that they are in. Blame looks into the past, not the future, and keeps us focused on what we should have done, as opposed to what we can do now.

I said at first it agitated me, because the more I thought about her words and her perspective, the more I came to realize that maybe her choice of words is a direct reflection of the rural community she is trying to help. Rural communities are often lower income, lower educated, often economically challenged, and without extensive healthcare options within the community area. Given this, for the people with diabetes that she is trying to help, it may be easier and more effective in managing diabetes within the community if they proceed with the idea of:

Losing weight + eating healthy + exercise = diabetes resolved.

As opposed to:

Medications = I have diabetes.

I know this equation doesn’t work for everyone, but I decided to give her the benefit of the doubt, because maybe it works for a majority of the patients in her care. Thinking about it from that perspective, it is certainly a lot easier to inspire people to take care of themselves when they can have a goal of “diabetes resolution.” For a rural community that simply does not have the resources to help every single person with Type 2 diabetes, and the community members themselves may not be able to afford medications, prevention and “resolution” may be the most effective options.

At first I wanted to jump up and say, “There is no cure for diabetes! You can’t give people that false hope! That isn’t fair!” Then I thought about it some more, and even if we find hope and can place our faith in things that under a microscope may not be completely accurate, if it gets us to a better place where less people are dying from diabetes, then I can certainly accept that bigger win in the long term.

Stop Diabetes

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