Archive for the ‘Uncategorized’ category

How My BG Feels From The Inside

August 21st, 2012

Watching various comments on multiple diabetes websites and pages I’m often taken aback by how it seems the majority of commenters feel about their disease.  It sort of struck me anew yesterday when I realized I was reading a thread full of comments that were commiserations about how difficult and isolating life with diabetes is.

I started thinking about how often I’ve said (a few times) and thought (many many more times): “but you don’t know how it feels to be ___(fill in a BG of your choice).”  I have a doctor’s appointment later in the week so my doctor is on my brain; she doesn’t have diabetes and I wonder how many times she has received this sort of comment from a patient.

I know I’ve said it to my husband.

Friends have asked me through the years, and you probably know as well as I just how difficult it is to explain what a high or a low really feels like, from the inside.

I know I’ve thought of my blood glucose levels when clients complain about being too tired to work out, or when coworkers say they were out late.  I wonder what they’d say if their CGM was alarming through the night and they couldn’t get their BG up or down to a safe and restful level.

It makes me wonder.

Because, at the same time, I’ve had clients report they couldn’t work out due to a migraine.  I’ve seen coworkers barricade themselves in a dark office and put their heads down on a desk to try and stave off a migraine attack; I don’t know more than a headache.

I don’t have arthritic bones that ache.  I don’t have joints that have never quite worked right, without pain.  I don’t wear dentures or have a metal screw in any of my bones.

I don’t have food allergies that make me quiz a restaurant before I go, before I order, and face a plate I’m not quite sure will send me to the ER.

I’m not allergic to bee stings or poison oak that make me fearful of being outdoors.

I mention all of these, because I’m not sure if feeling a high or low blood sugar from the inside is what counts for someone to comprehend or commiserate or celebrate about life with diabetes.

This isn’t to say that I don’t love hanging out with my diabetes peeps; the shorthand is amazing and fills me with a peace I don’t find anyplace else.

However, I don’t think it’s right to automatically disqualify others from my life with diabetes because they don’t know how it feels to be a certain BG level.

I just need them to know that I’m trying, every day, and some days it works and some days it doesn’t.  I need them to understand that for me, a number matters.  A level changes my physical energy, can drain my strength, and can make me question my actions on a level of self-analysis of my body most don’t reach.  I need them to respect that it is an isolating feeling to look around at people who aren’t counting, who aren’t calculating, who are biting into random food without, it seems, a care in the world.

Once I trust that they understand these things about me, I feel pretty safe with them.

It’s pretty cool that they care enough to even try to understand.  (If you didn’t have to know about diabetes, would YOU?)

The Mind of a Diabetic, Take 41,578

August 20th, 2012

I never really know what I’m going to blog about.  Sometimes I wait for inspiration, and every day suspect maybe it won’t come.  Like today, for instance…until I remembered a funny thing that I’ll say I’m blogging about but really it’s just a funny story and hope you enjoy it. 

My mom’s birthday was Friday (in case you missed it; don’t worry I signed your name to the card) and my parents and my husband and I went out to dinner on Saturday.

We went to a fancy little place that was fun to try for a special occasion.  They have a three-course prix fix menu… each of the courses has four options.

Lucky for us, the chef sent out an amuse bouche after we ordered and before our first course arrived.  YUM.  Seriously; who would have thought that cold squash soup needed a few leaves of Brussels sprouts and three drops of maple syrup?  Sounds disgusting but was delicious.

So we’re eating and chatting and enjoying ourselves through our entrée course (have to love that my dad and I ordered “poulet deux” or something and my mom asks what the other thing on the plate is next to the chicken… it’s another piece of chicken! …guess which of the four of us didn’t take French class…), just like normal people.  They weren’t huge portions so I don’t think I had taken any insulin for anything yet.  (This was NOT an Olive Garden kind of place.)

And then after the entrée the waiter comes out with some sort of little drink for us—it was some sort of milkshakey cinnamon sugar sort of thing.  I’m not sure what it was called, but let me tell you: WOAH was it sweet.  I took one sip (of the two sips in the glass) and handed it off.

And me being me, I said something like “there isn’t enough insulin in my pump to drink that!” as I bolus for the sip I had just ingested.  (Yes it was that sweet that I bloused for one sip.)

And we’re still all chatting along, talking about our days, and my dad asks me what my next course is.  I had just been talking about where I ran that morning, so presumed he meant where I would next be running an organized race.  I start telling him all about all of my plans for the next few months… and because he’s my dad, he lets me keep going until I’m done.

At that point he says: “well, that’s all well and good, but I was talking about your DINNER course; it’s dessert and I thought you were out of insulin.”


Cheese course.  And, I didn’t mean it; it was just a really sweet drink, Dad! 

I thought it was funny.  Maybe you had to be there.  It’s just not something that someone who doesn’t have diabetes would even think about, so I thought I’d share it today.

When Do You Bend?

August 17th, 2012

I’m trying a new infusion set today (this Mio thing is so teensy!).  It just reminds me how many different things I’ve tried with my diabetes—some have worked, some haven’t.  It’s personal preference, but I do think it is important to be open to new things.

I mean, I started out taking NPH and R in 100cc syringes twice daily.  If I hadn’t been open to trying new things, I’d still be there!  (True story; I met someone still on that regimen a few years back who had never heard of long acting and rapid acting insulin. Oy.)

People and companies are coming out with new diabetes things every day.  New tools, new gadgets, new approaches, new strategies.

These are all very good things, if one is willing to let go of a little control and try something new.

I remember hearing about this new-fangled insulin called Humalog.  H. I remember convincing my doctor I should try it out in my insulin pump.

I shake my head at the thought now (here sits this 19-20 year old who my doc should know doesn’t check her blood sugar and who has been on a pump for less than a year trying to get the doctor to prescribe something that works much differently than the standard used at the time…and she did it! She gave me the insulin! Yikes!), but really, it’s a very good thing to stay somewhat informed and willing to see what works for you. (I myself can’t stand reading something new about diabetes every day… it’s in my head enough as it is.)

Granted, I’m a very stubborn person who hates (H.A.T.E.S.) change, so why would I try to be flexible with my diabetes?  Doesn’t it work better if we all stick on a schedule and try to do the same thing at the same time every day?  (Scar tissue comes to mind as a good reason to switch things up…)

Well, because for me, my life works better if I have more flexibility than that.  I can’t stand eating the same thing for breakfast every day, much less lunch or dinner!  And with a husband who works different hours every day and different days every week, flexibility is sort of a must in my house.

And you never know what you might find out.  It’s important to interact with other people with diabetes and to talk about what works for everyone else.  We are all such Diabetes Detectives, why not share what we’ve learned works and doesn’t work.

Change your site locations. Use your arm, or your butt, or your hip or abdomen.  Don’t change your lancet until it hurts.  Change it every morning.  Try eating a GlucoLift tab, or a spoonful of honey.  Ask for sample infusion sets you’ve never used.  Talk to your doctor about the newest insulin and what is coming down the pike.  Pick up a diabetes magazine while you’re at it, and thumb through the ads at the back.

See what’s out there!  You never know what you’ll find.


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.

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:


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. 


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.


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.


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.


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.


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!”


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.