Archive for the ‘My Soapbox’ category

Argh.

August 16th, 2012

I’ve had some comments appear in my various inboxes over the past few years about how unusually positive Diabetes Outside is, by comparison.

I appreciate that very much, yet at the same time get frustrated that somehow positivity is unusual in diabetes circles.

(I’m not altogether all that more positive than anyone else I meet, either, by the way.  I just don’t let negativity slow me down or give me any excuses; if you’ve been here for any time at all you’ve probably seen I have a fair number of rants!)

I am not super sure I should be writing about this particular topic, as it’s definitely one close to everyone’s heart, but I feel like I’m avoiding it if I don’t discuss it at all.  Can’t have that.

It absolutely KILLS me that in a Diabetes Daily poll the other day asking people what their predominant emotion is about their diabetes and their future, the majority of people answered “fear.”

Followed by “worry.”

Together, fear and worry represented 56% of the people who answered the poll.  Fifty-six percent!

This may mean I don’t sleep well tonight.

At the bottom of the poll, 3% of the respondents answered “hope” is their prevailing emotion when they think about their diabetes and their future. 

Only 2% answered: acceptance, optimism, faith.

Those options didn’t even make the cutoff on the display screen!  Wow.

This means that at least half of you are still in the shadow of that monster.

And you know what?  If you are, I think you are selling yourself incredibly short.

Listen, I’m the last one to tell you it’s easy to accept diabetes.  I’ve worked at it, and will probably continue to work at it the rest of my life.  Diabetes isn’t an easy thing to do.  The disease carries with it an enormous responsibility and not much of a cushion for mistakes.  You don’t get to take a day away… it’s hard to even take a few hours away from calculating and figuring and planning and talking and thinking.

This is why I think acceptance is just so much easier than anything else.

Because the thing is?  You stop TRYING to get away from it.  You see diabetes isn’t the worst thing in the world.  You don’t feel like a failure before you get up in the morning simply because you have woken up in the shadow of a monster.

Calculating and figuring and talking and planning become “self” instead of “alien”… you stop fighting and noticing you are different than someone who isn’t calculating or figuring.  (Let me assure you, they’re busy doing something…something you probably don’t understand, either, just like they don’t understand your disease.)

I want you to work at accepting your life with your diabetes.  Let the monster go.

You’ve got better things to do here.

In Case You Didn’t Know

August 14th, 2012

In case you didn’t know… I’m a sucker for a medal.

An absolute sucker.

I will get up at 3am Florida time, stand around in 28 degree weather for an hour wearing a trash bag, and then run for four and a half hours including some of that through Animal Kingdom smells like you wouldn’t believe, slip on water that has frozen into ice on the ground at water stops, endure burning quad muscles for the last hour, and then stand around for another hour after I got to stop running in my sweaty clothes for one.

I’ll then turn around and sign up to do half of that all over again in southern California just to get a Super Coast to Coast Medal because I did them both in the same year.

I’ll run a 10k and have thirty seconds to change shoes and bib number before starting a 5k just to get one.

I’ll drive around with twelve people for three days I’ve never met before just to get one.

An absolute sucker.

But there is one, one very special medal, that I haven’t earned and can’t earn.

Yet.

Yes, I’ve blogged about it before, and I’m certain I’ll do it again.  I am very much looking forward to this medal.

You guessed it!  It’s the Joslin 50 years with Type One Diabetes medal.

Woot.

As close as I can get for now is the 25 year certificate.  Next year I’ll earn that one.  (That is 212 days, for those of me who is counting…)

Close enough for now.

Super excited.

Once I qualify for that certificate, I’m on my way to my medal.

I wonder what all will happen before I earn that beauty?

I can’t wait.

I should start shopping for a shadowbox or something for it now… it’ll take me forever to find just the perfect spot.

It’s way more important than any of my other medals.

I mean, I’ve earned them all, and I love them all in their individual ways, but this Joslin medal… woah.

Check it out.  You’ve got to send documentation and stuff, so get going on collecting and saving what you will need.  Certificates for anyone 25-49 years on insulin, then medals at 50 and 75 years.

I mean, haven’t we all said at one point or another that we deserve a medal for this? Thanks to Joslin for recognizing that, and us, and all we do.  This is fun!

:) Go after it!!

“I’m Totally In Control of My Diabetes!” (liar liar pants on fire)

August 8th, 2012

Whenever I hear someone say that to or around me, I see a little orange flag pop up out of their heads.

Because I think it’s the same thing as saying I’m Totally In Control of well, anything.  And I think that is not possible or realistic.

Which means, yes, that orange little flag popping out of their head?  It’s a Denial Warning.

Because the thing is, with diabetes?  We really do have a serious medical condition.  It really can take our lives away from us.  We really can get into situations that are not good for us to be in, and we really will need help to get out of those situations.

And this applies to every single one of us, no matter what our A1c is or how often we check our BGs or what we do and don’t eat, drink, or do.

It’s the nature of life, and particularly life with diabetes.

Respecting that is just something we need to do to really accept our disease.

So when I hear someone say they are Totally In Control of Their Diabetes, it makes me wonder what deep down they really truly think.  I suspect they have at least a thread of fear involved, that when challenged, raises the pitch and volume of their statements about Being in Control of Their Diabetes and encourages anyone around them to shut up.

I’m not saying I like this aspect of life with diabetes; who would? 

I had to write a persuasive essay when I was in high school and I wrote it to persuade the FAA to let me earn my commercial pilot’s license despite my having diabetes.  I’m telling you, it was a good essay.  I gave it to my boss at the time to read (figuring if I could persuade him I could persuade the teacher at least to give me a good grade) and I was absolutely devastated when he looked me straight in the eye and said “I don’t want you flying MY plane!”

Devastated.

He fortunately followed it up by saying he wouldn’t want someone with his eyesight to fly a plane he was on, either.  (I had to respect that; the man had some seriously thick glasses.)

I’m glad he was honest with me, and I’m glad he also gave me a different way of looking at the blanket ban on diabetics as commercial pilots.

Ever since that moment, anytime someone has told me or I have read about something diabetics as a class are not permitted to do, I look at the other classes who also are refused. 

It becomes less about me proving something to the world and something more about the world simply functioning as best it can.

Which is all I think any of us can do, with and without diabetes.  Whatever control we fool ourselves into believing we have, I think it is a good idea to also follow that thread of fear and see where it leads us. 

If we follow it and it leads us scary places, spend a little time there.  Feel it out.  See if there is something you can do about it, and if not, acknowledge that it’s there, and leave it be.  Fear itself is not something bad or something to be avoided.

Management of our diabetes means taking both physical and emotional aspects of the disease in stride.  We can’t control every day; that task would quickly take control of our lives.  We just need to make the best decisions that we can make, each day, and take as great care of our bodies as possible.

Releasing ourselves from the notion that we are ever completely in control is a smart thing to do, if you ask me.

Are You Sick?

August 7th, 2012

Do you consider yourself sick?  Does anyone else?

The plain and simple fact: I don’t consider myself sick, and I won’t put up with anyone who considers me sick because I have type one diabetes.

It’s just not my bag.

I don’t feel like I run or work out to prove anything to anyone aside from myself.  And that doesn’t have much to do with my disease—it has more to do with my weight in my early 20s and my (for lack of a better term) transformation through the years.  My drive has become a major part of who I am.

But you bet—if I’m in front of my bootcampers, I’m for sure going to do more pushups on my toes than I would do if I were in my living room!  :P 

On the whole, I simply do not see what treating myself as if I am sick will get me.  I try not to push myself over the edge, and have learned to listen to my body and give it a rest when it needs one… but that’s just being smart.  It isn’t because I have diabetes. 

I’ve said it before and I’ll say it again: we all have things.  Every single person on the planet.

But it’s the people who are out there despite whatever things they’ve got going on that I think truly are a testament to the human spirit and what people are really capable of—if one is daring enough to try.  Facing the world as an Olympic hopeful or seasoned veteran? Running with one real leg and one artificial?  Paralympians?  Check these athletes OUT. 

Everyone has something.  Looking at these faces of these athletes, they are focused and determined and calculating what they need to do to succeed.  It isn’t about feeling less than someone else.  It isn’t about being sad or small or diminished.  It’s about accomplishing their goals.

Who doesn’t want that?

It is perhaps why I can’t stand doctors’ waiting rooms.  I sit there and am surrounded by others who appear and act sick and mopey and sad because they have diabetes.  I don’t feel like I belong in that category and don’t want to be associated with them.

Again, it’s just not my bag.

Sitting Volleyball MatchDoes that mean a week of highs doesn’t affect me?  Of course not.  I feel like crap just like anyone would.  I just don’t let it seep into everything I want to get done.  I don’t use my blood sugar levels as an excuse or permission to always go easy on myself.  (Although I have used a low to skip a race about a year ago…I had been low enough that running for two hours would have been detrimental to my performance and my health for several additional days or weeks.  Not worth it.)

When I’ve had a bad low, or several in a row, I’m exhausted.  Yet it doesn’t stop me very much. 

I see people every day who don’t have diabetes and who give themselves rationales and excuses all the time, from sleeping poorly to eating something that didn’t agree with them.  I wonder how they would react if they were diagnosed with diabetes, or if they had something that severely limited their ability to move without help, and they or their family started to see them as less than healthy.

WinnersAnd then I turn to another extreme, in particular the Paralympians, and think: thank God.  They can truly teach us all that being a champion has little to do with our physical things, and everything to do with something bigger and deeper.

What fantastic athletes, every single one of them.

Anything You Want

August 2nd, 2012

It’s important to START getting yourself where you want to be. 

You may surprise yourself along the way.

Is it fitness?  Is it body weight?  Your blood glucose levels?

Making a change for the better when it comes to any of them, I know from experience, requires patience and understanding of yourself and what you need.

It requires planning and flexibility.  And a fair amount of understanding.

Not to mention it requires determination!

This all sounds like a lot of work and a lot of changes and a lot of work and stress and did I mention a lot of work?  Gah; it’s no wonder people would rather spend a gazillion dollars on fix-it-fast “solutions” that sound good but don’t work.

And yes, the work is all worth it. 

But did you know, even if you don’t get to a size 4 overnight, that what will happen is that you will start feeling better about yourself almost immediately?  As soon as you start to make the changes you need to make, you will see that you ARE working on the goal, and you may start to understand that you WILL achieve it in time.

Baby steps are, after all, still steps.  Stumbling and falling and getting back up is still movement toward your goal.  Keep at it; keep on keepin’ on, and you can get there.

It’ll be great when you reach your goal, or mini goals along the way, and can then look back at where you are today and say: I’ve accomplished a lot of good things for myself.  Good job, Me.

I’m telling you: it’ll be great.  So, start today by simply determining what the first few steps are: do you need to clean out your cupboard?  Skip some desserts this week?  Try a walk each day for ten minutes? Bring your BG meter with you to the office? Sub in some fruits or vegetables instead of boxes or bags?

These are things YOU CAN DO.  You don’t need to schedule an appointment, or get a job, or go to school.  You just need to START.  That’s all!

Go after your happiness; it’s there and it’s waiting for you.

Winner, Winner Chicken Dinner

August 1st, 2012

This is going to sound strange, maybe, but I sort of like that I’m not a very good or very fast runner.

I like it, because I can always work at different parts of my running and maybe get better.  I know that because I have, and the ways I’ve gotten better have surprised me through the years. 

I really like that I do it even though I’m not particularly good at it.  (I think that should tell you right there how much I like running!  I can’t think of other things I do that I’m happy to do even though I don’t feel like I’m very good at it.)

And, better than all of this, I know I will never stand on a podium for running. “Winning” is plain and simple not possible in this body.

But I’m cool with that.

One could say it’s not possible for me to ever be President of the United States, and I will disagree. (T1s are taking over the world!) Yet win, for example, the San Francisco marathon? I’ll maybe be the first to say it isn’t going to happen.

It almost gives me a break from trying to win or excel at everything I do. When I’m running, or thinking about running, or have just returned from a run, or am signing up for a run, or am mapping out a run, I’m having a good time.  I literally run errands, just for the heck of it and because I can.

I run by myself, I run with friends, I make new friends.  It is completely not about winning.

Which sort of makes me… yeah… a winner.

Woot!

It Isn’t That I’m Not Angry

July 30th, 2012

I don’t know what it means, but I don’t tend to get mad at my insulin. Or my pump. I do get irritated by my CGM, though, like I would by some loud little brother who Won’t. Shut. Up.

Anyway, I tend not to get angry at my diabetes. I just don’t. I’m simply not angry with my pancreas for failing to withstand the onslaught of self destruction 25 years ago.

What purpose would any of that serve?

Is it that I’m too pragmatic to feel anger is useful? Is it that I’m just so relieved to not be as afraid as I was for so long? Was I in denial and didn’t know I was angry in high school, so now the whole concept of going anywhere near any of that is exhausting?

Probably a little of all of those.

I AM angry at the thousands of medical professionals and marketing campaigns and diabetes organizations who portray diabetes as something we all “suffer” with and are “debilitated” by. I’m angry that it feels they are using fear as a motivator to either sell products, encourage compliance, or generate sympathy.

When I asked Diabetes Outside Facebook fans a number of months ago if they wanted pity or respect when it came to their lives with diabetes, no one said they wanted pity.

So why are companies skewing the reality of life with diabetes and thus encouraging these notions of diabetes as terrible and overwhelming?

Well, actually, I don’t care what advertisers do; I understand their goals are different than mine. But the medical profession?! Come on.

When a toddler falls down, the smarter adult will check the kid out from a bit of a distance before making a big fuss—if it’s just a tumble, the toddler will make a huge fuss if the adult does so first.  They watch us to learn how they are supposed to react.  I think it’s the same way with a diabetes diagnosis.  It’s difficult, and we will for sure have bumps and bruises along the way, but being frightened by a medical professional sharing needless horror stories is just not the best way to get through every day with this disease.

When it comes to those of us completely overwhelmed by our diagnosis and our daily lives with diabetes, I say: you can do this.  It will help if you find professionals who treat you the way you deserve to be treated—with respect, and with understanding, but without condescension. 

We all had lives before we were diagnosed that we want and need to continue.  That we should and can continue.

We now just take our diabetes along for the ride.

I Can’t Get Over How Lucky We Are

July 27th, 2012

I don’t see enough gratitude around here when it comes to life with diabetes these days.  I mean it; thirty years ago we were better off than thirty years before that, and thirty years before that (1922) a diabetes diagnosis was a death sentence for almost all patients.  Why are so many people missing this?

Today, we aren’t so much patients as we are amazing individuals capable of and doing amazing things.  We have little teensy blood glucose monitors that we are encouraged to use—not test tubes or urine strips with 40 mg/dL ranges.  The teensiest one I’ve seen is about the size of a watch—no joking. 

We are so lucky right now, today!

I use tools that most people can’t see when they meet me, which enables me to choose how much I involve others in my disease.  I am strong and fit.  I have a great education.  I have had absolutely amazing experiences in the world.

I credit much of this to my diabetes, and particularly to being diagnosed when I was.

Insulin pumps went from something sick people lugged around on a cart to something on my waistband frequently mistaken for a pager or garage door opener (yeah; that’s my favorite one) that I run marathons with. 

I wear a little gadget that tells me and shows me what it thinks my blood glucose levels are 24 hours of the day.  If he’s irritating me, I can turn him off or tell him to shut up for a few hours.

Absolutely amazing, AMAZING tools when you think about it.

I don’t want to get too Pollyanna on you, here, because of course I’m still mildly irritated that my insulin doesn’t work quickly enough to tackle some foods appropriately, and I’d love a fail-proof catheter for my insulin pump.  I’d love to never wake up with my tongue telling me I’m way past 250 and have a long morning ahead of me.  I’d love to eradicate my dawn phenomenon that means my insulin needs are about twice as much from 8a-noon than they are the remainder of the day.  I mean, I’m a picky demanding type one—I have a list of what I want to see. 

I don’t focus on the things on that list, though.  I’m too busy making my life what I want it to be.

And, if I never get any of those things (many of which I really think are just a matter of time), I’m still way ahead of those who went before me, each of whom were and are pretty amazing in their own rights.  I’m way ahead of people whose bodies work without them thinking about it—because I don’t think they truly value what they have, or what they are capable of.

I’m a type one diabetic in 2012 and I have the world at my fingertips, just waiting for me to reach out.  Pretty cool.

Researchers

October 7th, 2011

Researchers crack me up sometimes!

First off, I don’t know what they originally studied here, but the abstract that I can access mentions “re-examining” so clearly there was a first step we can only imagine.

The researchers here checked the brains of young adults with type one to see if either a history of severe hypoglycemia, a history of severe diabetic ketoacidosis, or a history of long-term glycemic control affected cognitive functioning.

Not a bad idea for a research study, if you ask me.

They took 34 non-diabetics aged roughly 19 years of age and they took 33 type one diabetics roughly the same age who had all been living with diabetes for about 16 years.  A1cs on the diabetic subjects was about 8.7%. (This is not a number that I would consider appropriate for the label “long-term glycemic control,” for the record.  Of course, it’s about 6% better than mine was at the time, but I digress.)

The full-scale IQ scores were the same between each group.

The researchers lined all these subjects up and tested them on a few subjects, I guess (have to guess as I have less than no idea how people test brains when brains are still alive and working) and this is what they found: These data suggest no difference in general intellectual ability, memory, and emotional difficulties in our cohort of young adults with early-onset type 1 diabetes compared with control subjects and no deterioration over time.

Woot!

And then the kicker: There were, however, findings to suggest subtle changes leading to poorer performance on complex tasks of executive function.

So, okay.   I understand.  Apparently having diabetes since the average age here of three (3!!) means these 33 young adults may perform poorer than their non-diabetic peers on “complex tasks of executive function.” (Not that I can tell you without Googling it what that means.)

Oh geez!!  Wikipedia says:   Executive function is an umbrella term for cognitive processes such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, multi-tasking, initiation and monitoring of actions.

Going down that list, from my perspective of living with type one diabetes:

Planning.  What do I need to do to keep from going low?  What do I need to do if I do go low?

Working Memory. What did I eat was it enough carbs to cover the insulin?

Attention. Where are all of my supplies? What is my blood sugar right now?

Problem Solving. I don’t feel great and my meter just said I’m 80.  Now what?

Verbal Reasoning. I need to ask for some sugar but they don’t know I have diabetes so I have to explain it.  (or) My mom just yelled at me for not checking so I have to tell her why I didn’t check.

Inhibition. I didn’t check because I was at the new sports thing and no one knows I have diabetes and I don’t want to deal with the questions.

Mental Flexibility. I think I’m low so I will check.  Oh shoot I’m not low I’m 220 maybe I’m just hungry what am I supposed to do now?

Multi-Tasking. I’m supposed to be taking that test next period but I just had P.E. and I’m feeling shaky and shoot I didn’t finish my assignment for this class and where is my meter and oh no I think I forgot my lunch.

Initiation of Actions.  Feeling junky.  Gotta eat or check.

Monitoring of Actions.  Still feel shaky.  I’ll give it 15 minutes and check again.

This just gets funnier and funnier to me.  I makes me have to ask: Are you serious, researchers??  Did you somehow not account for the COMPLEX TASKS OF EXECUTIVE FUNCTION that is blood glucose management every minute of every day of life with type one diabetes?

I think they should have somehow accounted for the fact we call diabetes the thinking person’s disease for a reason. 

Now THAT is a study I want to see.

Parents Are People, Too

October 3rd, 2011

Just because you’re in charge of a kid, or even more, a kid with diabetes, you still need to carve out some time to take care of yourself, too.  Why?  Because you teach your children how to care for themselves when you take care of yourself.

It’s super important.

They’ve done studies where they looked at moderately obese children (5-9 year olds) and focused not on the kid at all—they looked at the parents.  By educating the parents and specifically training them in ways to make good, healthy choices their kids lost about 10% of their body weight, and kept it off for two years.

It isn’t just about you, and it isn’t just about your kid.  It’s about making good choices for EVERYONE.

But.  How. Do. You. Do. This. Amazingly. Difficult. Job. On. Top. Of. Your. Other. Jobs.

Some suggestions from a recent ACE magazine article:

  1. Take the kids along for the ride. “The best way for me to exercise is to take both kids out in the jogging stroller. Once or twice a week I meet some other moms at the walking trail. Pushing 60-plus pounds of kids and stroller up and down hills for an hour is a pretty good workout!” recommends Danielle Rattray, mother to Owen (4) and Hannah (1).
  2. Ask for help. Lean on a spouse or partner to watch the kids for a few minutes and go for a quick workout. Working parents often want to spend every non-working moment with the kids, but sometimes carving out a few minutes of personal time can make all the difference. “It’s hard not to feel guilty taking time to exercise by yourself when I already feel like I don’t get to spend enough time with [two-year-old] Xavier,” says Amber Curran. “But it keeps me happier and less crazy, so I figure that benefits him as well.” After all, she says, “No one wants a nutty mother!”
  3. Make a game of it. Barb Ruvarac, mother of school-aged children, Samantha and Zach, pushed herself to meet a predefined number of steps each day. If that means staying up late to get the steps in, so be it. “When Samantha went to bed I would finish my steps on the treadmill to reach 10,000 steps. Some days I’d only have to walk for 30 minutes, some days it would take longer. Then, I graduated from walking to running. Then my husband signed us up for the Shamrock Shuffle in 2010—first running event ever! And by May of 2010, I’d lost 20 pounds and two dress sizes!” Barb is now an avid half-marathoner and highly active role model to her highly active children.
  4. Prioritize. In describing her commitment to exercise despite working full-time and raising a nine-month-old, Beth Read uses an analogy that we all can relate to: “Like they tell you in the airplane…put on your oxygen mask first before assisting others.” Whether that means waking up before the children or staying up a little bit later, getting a few minutes of physical activity sets the stage for a more productive day and well-balanced person.
  5. Set goals. Tackling the most challenging health struggles becomes a little bit easier with goal-setting. Try this exercise: Write down three goals—a nutrition goal, a fitness goal and a behavioral goal. Operationalize this goal as much as possible by trying to make sure that the goal is SMART. Specific: What is it exactly that you hope to achieve? Measurable: How will you know if you got there? Attainable: Make sure it is something realistic that you are going to be able to achieve with some moderate amount of effort. Relevant: Choose goals that really are meaningful to you and that will help you feel like you’ve really accomplished something. And Timely: Set a date for when you hope to achieve your goal that is far enough in the future to give you time to meet it, but not so far that you will lose interest before reaching it.
  6. Commit to setting an example. It’s simple: Kids pay attention to what their parents are doing. Despite the many barriers to physical activity, taking the time—even if it’s just a few minutes per day—to engage in physical activity sets a powerful example for children. The repeated opportunities to see how you eat and play make it easy for kids to remember the experiences. And kids are motivated to copy their parents’ actions.

You aren’t alone in thinking this is a big giant task.  It is, and you’re lucky to love your kids enough to find a way to make it work for both of you.

You can do it!!!