Archive for August, 2012

I am Riveted

August 15th, 2012

There is nothing else, really, that I can say for myself at this moment.

I am riveted to the image my mom emailed.

It’s the hospital bill from March, 1988.Fascinating stuff, here, about the first four days of my new diabetic life in 1988.

It’s my diagnosis bill!!!

First: a four day stay cost $2,468.66.  (Are you JOKING?!)  What a steal of a deal.

Second: that includes TWO of those nasty potassium drinks, omg.  Blech.  I can’t believe that cost only $1.48.  I’d pay a hundred times that to NOT drink it.  Blech. Shudder.

Third: awww, my first blood checks!!!  Each one cost $35.

Fourth: they charged for a diabetic start kit.  What is that.

Fifth: awww, my first insulin shot!!!  Regular.  Aww. 

Ooh: the diagnosis code they used?  Diabetes, juvenile, uncontrolled.  Yeah; I’ll say it was uncontrolled!!!  I hadn’t been properly making insulin for months and months…

(This is the one and only time I will permit this “uncontrolled” diagnosis without a fight.  For the record.)

Awww… and then my mom sent me a copy of a note my dad wrote to his coworkers after I got home.  It’s sort of cute!  And it sort of in hindsight tells me just how little he realized, a week after I was diagnosed, and how hands-off everyone foolishly used to be when it came to a type one diabetes diagnosis:

FYI,

Amy (age 10) was diagnosed as diabetic and spent last week in the hospital until they stabilized her blood glucose level with insulin.  She is back to a normal lifestyle now, except she has to analyze 4 blood samples and give herself 2 insulin injections every day. 

We all have appreciated the concern and support of [his coworkers].

It’s just so, so, I don’t know, cute and captures a lot.  A lot of how little we knew, I guess. 

And, also, maybe just how much my parents were unable to see was going on with their little girl.  I don’t think it took four days to get my blood glucose level “stable” (and, btw, what is that? I still search for that every day!)… I think it took that long and probably longer to get my blood chemistry back in line after months of living in ketosis.  (That’s what the Astra-8 and SMA panel lab charges are…you can see they took that multiple times over the four days.)

I was a very sick little girl.  This bill shows me just how sick, and is a great little reminder of how far I’ve come (and how much I heart insulin).

Oh, and they didn’t charge me for the diabetic folder.  Wonder what that was.  Bedside supplies were $5.23! (Was that the pillow? Kleenex box? Water jug?)

Aw, I just think it’s fun to see.

AND, it’s helping me get that medal. 

Woot.

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 Was So Very Wrong About the Downhill-Ness (Water to Wine Half Marathon Report)

August 13th, 2012

Let me just let the cat out of this bag right up front and say: I WAS WRONG to call this a downhill race.

It was an amazingly odd weekend: no joke, I was on an 80% basal almost the entire weekend and didn’t bolus for most of the food I ate, and still stayed between 60-90mg/dL the entire time. Wacky.  I think it was a combination of a random heat wave and starting my period and maybe an unusually fresh site… none of which would account for three days of these seriously low insulin requirements.  So this was something I was trying to calculate sort of the entire weekend.  (Which, on the whole, was much more fun than having insulin that doesn’t work!)

Which is all well and good, until you factor in the fact that on Sunday I had to get up and run 13 miles.

The run started at 7am so I planned to wake at 5 and leave at 6 for the start line.  So, of course, I woke up at 3am with a BG of 68… had juice, set a temp basal even lower, and went back to sleep for an hour.  Woke at 4am.  A.w.a.k.e.

So, I lay there and tried to snooze until the alarm went off.   Ate a banana, no insulin.  That right there should tell you how weird this entire weekend was!

As we left for the start line, I lowered my basal again, trying to get above 140 to start the run.

Let me interrupt myself and say that we drove the route the day before, and my friend sat in the front seat with me in the back, and I can hear her under her breath saying “this is an uphill” or “a downhill” and yet again “another uphill” and “downhill!” the entire time we were on the road.  It was sort of cute, until you paid attention to just how many times she said “up” and how many times she wasn’t saying “down!”

Yes, this was a rolling hill race… which is to say, NOT FLAT and NOT DOWNHILL.  Sure, overall, we lost about 200 feet over the 13 miles (which was not 13.1 miles at all, but 13.28 miles, about which I plan to pout the rest of the week), but it just wasn’t a simple down… it was many many little ups and little downs.

Sigh.  I should have known it wasn’t going to be easy.

Anyway, we’re at the start line and my BG was 154 about a half hour before the start.  Yay; right where I wanted it.  Of course, my sensor was freaking out and telling me alert alert alert you’re 239 double up… so I recalibrated, and said calm down (and shut up because you shouldn’t be able to yell and scream if you’re that wrong).

Finally, we’re in the countdown to the Official Start.  I look down, and my sensor says, of course, Calibration Error.  Duh.  So with ten seconds to start, I challenge myself to check my BG as we all count down.  I almost made it, too!

I calibrated as I crossed the start: 208.  Fine.  I’m running, it’ll work out.

DOWN HILL!!!  Yay!!!

I start running with my friend, which I had promised myself I wouldn’t do because she runs much faster than I run and starting fast is just not a good way to go for an endurance event like this.  Caught myself running a 7:39 mile in there at the start; not great.

It was fun to run with my friend anyway, which I did for the first three miles, and hear her again saying “uphill” and “downhill” each time we encountered another one (which was about every 60 yards).  It was just so funny; I’m not sure if she knew she was doing it.

We saw my husband waiting at our first turn at mile 3.  Always fun to see him out there, supporting us.  Always.  He snapped a few photos and I ate a gu as I climbed… oh, yes…another hill.

Halfway through the run, I checked my BG and was 228.  This is not at all surprising, as I had been on a 50% basal for most of the morning, eaten a banana (30 grams) and had a gu (26 grams) 30 minutes before I checked, and was running relatively downhill (running down will not affect my BG like running up).

Checked again for some reason every 15 minutes for the second hour of the run.  I think I was trying to get back in range and afraid I’d overdone it or something with a bolus.  I don’t know; I was also trying to run fast and not get irritated by all the ups and downs (and did I mention up again).  So, at 8:15 I was 230, 8:30 I was 171 and 8:45 I was 150.  I finished at 9:03 or something (a 2:03 something half isn’t what I was going for, but then again, did I mention the up hills) and checked after I was out of the chutes.  Finishing at 140 was good; checked again maybe 20-30 minutes later and was back up at 186before I went back down shortly after that.

My friend and my husband kept asking me questions and I had to yell STOP I’M TRYING TO FIGURE OUT MY BG :) (good thing it was my friend and my husband!)

Hey, my BGs were sort of like the course elevation!

And then I returned to the 60-90 all day.  (I’m telling you, it was weird.)

FOR MY CANADIAN FRIENDS: these numbers are 4.0, 9.1, 12.2, 13.4, 13.5, 10.1, 8.8, 8.2 I think.  I divided all of the ones up there by 17.

 

 

 

Pre-Half Marathon Report

August 10th, 2012

I’m running the Water to Wine Half Marathon on Sunday.  I’m looking forward to it!!  I will travel to beautiful and crazy hot wine country and start at a lake and then end at a winery… 13.1 miles away.  Sounds like fun, doesn’t it?  Free wine glass (not free glass of wine, just the empty glass) and shirt for all participants.

I drove portions of the course a few months ago; I’m curious what it will look like on Sunday!  Temperatures are expected to be in the high 90s all weekend.

I’m glad it starts at 7am.

Here’s the reason I wanted to run this one, aside from the fact I like the area and it will be a pretty course.  The real reason I’m looking forward to it?

Check out the elevation map.

I think after that one little thing around mile seven, I’ll be happy… don’t you?

Oh, yeah… that sucker looks ALL DOWNHILL.

SWEET!

Alright: full disclosure.  I have a long history of convincing myself, based on elevation maps of courses of events I haven’t actually done, that a course is going to be flat, or downhill.  So, I’m just not entirely sure how this one will FEEL while I’m out there.

My two recent experiences with this odd phenomena include the Madison Marathon (I told myself it was flat… how I got that idea I’m not sure)

I look at this and shake my head at my ever thinking this would be “flat.”

and the San Francisco Marathon (seriously; what made me think that San Francisco would give me downhills without the corresponding uphills?!)—the second half of that SF one was supposed to be a “net downhill” which is a phrase I learned to hate over a few hours last July.

They say the second half is a “net downhill”… which I now believe means “a lot of uphill.”

In any case, despite the fear I will repeat this “convince myself it’ll feel easy” thing I seem to do, I’m excited.

Bam.

August 9th, 2012

I often wonder about those of you who were diagnosed as a teen or later in your life—when you were old enough to have clear memories of Life Before Diagnosis and Life After Diagnosis.

I think, generally, kids do a fine job of going with the flow after a diabetes diagnosis more than most people over the age of fifteen or so.  I think the younger ones are still learning about and defining for themselves what the world even IS, such that anything new or any change is just added to the list of what else they learned that day, week, month, or year.

This isn’t to say that I think kids have it EASY when it comes to a diabetes diagnosis; just that they have different adjustments to make.  I think parents have a lot to do with a child’s adjustment and acceptance of their diabetes, as well.  (It’s always a struggle, I know, for parents when their child is diagnosed.  But when I look at the child who now has diabetes, I don’t see the same sense of loss or fear or disappointment. But THAT is a different topic.)

I think it must have been harder for those diagnosed any time after the arbitrary age I just chose of fifteen years.  Intellectually, yes, the carbohydrates and calculations and learning and basic nuts and bolts education is not the high wall that it will be for a younger kid, but the younger kid just won’t have the developed sense of identity that must be altered at diagnosis that an older person has.

I think of a young woman I met a few years ago, who was on her way after high school graduation into the Air Force.  Bam.  Diagnosed with type one diabetes. 

I think of the champion distance runner and the handful of professional athletes who recognize only that their usual performance is suffering.  Bam.  Diagnosed with type one diabetes.

Or the forty something established attorney who has been noticing a few things don’t feel right and sees his doctor.  Bam. Diagnosed with type two diabetes… then, later… Bam. Diagnosed with type one diabetes.

Or the sixty something grandmother who has been aging gracefully and gardening faithfully for years and after her annual lab work now sees it.  Bam. Diagnosed with type two diabetes.

For most of you who were diagnosed later, I can see how acceptance of your new diabetic life may be more difficult than someone who was diagnosed before they really were old enough to be on their own in the world.

In a lot of ways, I guess I feel lucky that I don’t remember now what it was like to eat and not think about any of it, or not do a calculation or my energy expenditures or carry around a little calculator and be my own little Bolus Wizard.

It’s just something I think about.

“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.

Paragraphs and Paragraphs about Tape

August 6th, 2012

My mom emailed me the other day and asked if I thought my skin had toughened after so many years with diabetes and the various taping involved in wearing a pump and CGM for the last…let’s see…carry the one…seventeen years.

Someone mentioned the idea to me a few years ago, too.  It doesn’t seem to me like something that’s even possible!  (I’m not talking about calluses or scar tissue that has formed as a result of a zillion finger sticks or needles or sites.  This is surface skin “toughening” based on various adhesives over time.)

Because it’s Monday and I’m being a lazypants with this blog, I’ll just paste in my email response to her question.  For what it’s worth, which probably isn’t a whole lot, but one never knows:

I don’t think my skin has toughened from tape; I think I have pretty tough skin as it is, compared to comments other people have made through the years.  I have a hard time getting it to stick through sweat, etc. and that Mastisol stuff has truly been a life saver.  I have no idea come to think of it where/how I heard about that stuff.  I know one of the Minimed reps said he broke in a rash if I even mentioned “Mastisol”. 

Other people can use all sorts of tapes that don’t work for me– I know when I first went on the pump and had to use that bent needle thing with a piece of tape over it, that tape was awful.  The tapes (actual tape dispenser medical tape stuff) just won’t stick to me.  Or won’t stay stuck, or something. 

This has been a system I’ve spent years discovering what works!  It’s funny you mention it today, though, since on [Saturday] today’s run I was feeling slightly claustrophobic just with my sensor on my arm– it has been on since I think Monday and the edges of the tape are unsticking slowly and annoyingly.  And my site is on its third day, too, so I’m just ready to change them ALL!  But, for example, I’m the only person I know who needs to put down Mastisol, and a serious tape Tegaderm, before I even put in the sensor.  If I just go with the sensor and no tape like everyone at Minimed says I have to do, it will fall out.

All of that said, if something happens and I have to take something off before the three days?  Like, in that first day?  OMG now THAT HURTS. 

I’d love to hear what works for you when it comes to sticking things on, or if you think your skin has changed based on your diabetes management!

“Well, As A Diabetic…”

August 3rd, 2012

It’s usually said in a nearly dismissive way, as though the speaker isn’t hearing what they are saying.

It’s usually heard in a loudspeaker voice, decibels reverberating in the air for minutes.

It’s the medical “well, as a diabetic …” phrase.

Yeah; I know I have diabetes.  I know that having high blood glucose levels for any sustained length of time will cause a myriad of damaging things to happen to my body.  I know, for example, that one of them is a slower healing process.  I know.

But did YOU know that I’m not in that category as much as you may presume, Medical Professional? Did YOU know how much work I put in throughout my day and night every day, and how much learning I have gone through in the past 24 years?  Did YOU know what my typical BG ranges are, or even what they mean?

Didja?

I will say; I’m glad I don’t get the mini lectures I used to get from specialists when I’d see them for something or other (and I know whatever it was is unlikely to have been related to my diabetes since I haven’t experienced complications) and they’d launch in to tell me something or other about whatever diabetes could do to THEIR specialty.  I’m hoping that’s because I’m older than I used to be (happens every day!), but I think with this idea probably kids could stand to think about it, too. 

Because, really: yawn.  Do you think we don’t know?  Do you think we all just sit around and eat bon bons in Denial Land?  I wonder what they teach doctors in medical school about “diabetes” in their endocrine system chapters.  Someday I’ll ask them how long they had to spend studying the diseases (type 1 and type 2 are not the same disease if only due to their different beginnings in the body) before they graduated and went into their specialties.

One thing I can tell you for absolute certain: every single person with diabetes has a different experience.  There is no generic “diabetic” out there.  Whether I run marathons or become a librarian or raise bunnies in the back yard, me as a diabetic is just like me as a person: an individual. I have my weaknesses and my strengths and I have my bad days and my good days, just like anyone else.

So when these generalizations come out of the medical professional’s mouth, that is what I am thinking about.  I’m thinking about why they are saying something that may or may not apply to me, or if they have even thought about whether or not it does. 

Sometimes I call them on it, and we can begin a discussion.  Sometimes not. 

Either way, for me, recognizing that what most medical professionals know about my diabetes is infinitesimal by comparison to what I know about my diabetes.

And that is how it should be, at least for this diabetic.

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.