Archive for the ‘Random Musings’ category

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?


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.

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.


Things I Could Not Have Known

July 31st, 2012

A diabetes diagnosis at any age is overwhelming, to say the least!  When I was diagnosed at age 10, there were just so many things to learn. 

I wonder, though, what I might have thought if I had known then what I know now about my life with diabetes.  Some key things that, had I been able to hear them, I might have found comforting or useful:

  • You have an opportunity to grow, or to shrink. Right now.
  • You will rely on elementary school math like no one else.
  • You will become a great Diabetes Detective.
  • You will learn all foods available in your country, and some beyond your borders.
  • Nothing will work the exact same way again.  You just have to go with it.
  • Your mind and calculations will be a ribbon of thought never lost, never forgotten.
  • Your vocabulary will expand.
  • You will have an encyclopedic knowledge of what will and will not affect your blood sugar levels; these are things most don’t think about ever at all.
  • You will get to know your body better than any physician.
  • Textbooks will not help as much as you want them to help.
  • You will need to learn to speak up.
  • Time has changed now; minutes matter in new ways.
  • Go find other people with your disease.  You will need to laugh and cry and yell and scream with others who understand.
  • You will sometimes go to sleep with juice still in your mouth.
  • You will carry something all the time.
  • You will calculate and triangulate your days and activities every day.
  • You won’t really get a break. Ever.
  • There will be numbers you don’t understand.
  • You will learn who your friends are.
  • It doesn’t have to be awful.
  • You are stronger than you think you are.

I’m sure you have some words of wisdom about this, as well, when it comes to things you could not have known at diagnosis but certainly you do know now.  What are they?

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.

World of Difference

July 26th, 2012

I spent a fantastic four days with 12 other type one athletes last week at the Ragnar Northwest Passage. It reminded me a little bit of being up at camp, plus fifteen years.  (I know; I had to do the math a number of times… fifteen years feels like yesterday!)

I really enjoy the fact that when we get together, diabetes is not as forefront of a topic as one might think.  We pretty much share what type of insulin delivery/monitoring we do (Pump? Syringes? Pen?) and which brands we like and why, and then sometimes how old we were at diagnosis.  Pretty much after that there isn’t that much to say…(unless you want to discuss whether you are a diabetic or a person with diabetes…)

I sort of like that.

We did discuss how so many of us are control freaks/type A personalities.  One woman captured it well when she said we are so used to Being In Charge to protect ourselves it’s sort of now how we operate.  Yet in a group of other type ones, we all sort of did our own thing to take care of ourselves and let the rest go.  Insulindependence did a fabulous job acknowledging that in subtle ways: they sent us the itinerary, discussed and gave links to restaurants we planned to visit, told us how long the drives were scheduled to take.

Little things like that that we so rarely get without scrambling after in our daily lives spent with non-diabetics who don’t have to think about this stuff.

Which, I believe, do not end up being little things at all when you add them together, day after day, for decades.  It’s one of the things I think can wear us down when we live with diabetes.

I don’t have many words of wisdom beyond these: one way to take care of yourself and your life with diabetes (or your diabetic life, take your pick) is to spend some time with other people who care about these same seemingly small things. 

It will do you a world of good.

I don’t mean get together and complain about anything: I mean get together to DO something—whether it be making a meal or taking a walk or going fishing or golfing or shoot running 200 miles—but do it with people who have similar thoughts running silently and relentlessly through their brains.

It’s very nice to know and truly feel you aren’t the only one.  Very nice.

(Many thanks to insulindependence and my team!!)


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.


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.

It’s That Time of Year Again. Boo.

October 6th, 2011

I’m not a big fan of Halloween.  As in, really not a big fan.  I know that makes me a big ole party pooper, but there it is.

For one thing, everybody tries to be somebody else.  Um, I think being myself is plenty hard enough thank you very much and I don’t appreciate people trying hard to fake it as someone or something else.

Totally just me; I get that.  Heck, it weirds me out how many people color their hair.  I’m telling you.

And then there is the fear factor of Halloween, when people dress up as dead people and hide and jump out and dear me are you kidding.

We won’t even DISCUSS the fake spiders or webs.  *shudder*

At my elementary school, we had a parade on Halloween.  That was okay.  Less sitting still in class, more walking around.  Way better!

So for the first ten years of my life, sure, dress me up and put itchy face paint on and make me not touch the makeup all day, fine.  Just pay me in candy and I’ll be juuust peachy.

And then came diabetes.

At the time, candy for a diabetic was a no-no.  My “medical team” aka my pediatrician didn’t ever think about even a sliding scale of insulin to cover carbohydrates, much less carbohydrate counting or whatever the heck a bolus was.

Doesn’t mean I didn’t eat candy, though!

I just had to sneak it. (Tell me how you sneak candy when you take the exact same dose of insulin each day and eat the same food just now with candy.  How?  For me, hide the numbers too.  THIS IS WHY parents need to see the whole 5 second blood check.  In person.  With real blood.  Every time.)

Thankfully, we do things differently now when it comes to life with type one diabetes: carb counting, insulin shots, pens, and pumps.  All foods generally allowed if counted, and if parents say okay.

October means a lot of things (Happy 10th birthday kitten loves Gracie and George! Winter socks! Cranberry-Orange tea!) and Halloween gives me a chance to smile at how far we’ve come in terms of life as a kid with diabetes.

Maybe it isn’t such a crummy holiday after all.

Just get rid of the spiders; I’m begging you.