The Pancreas Post

I think I’m about to step back into the light - I just went through a rough few weeks of barely testing my BG and I’m in the dark on why.  Every now and then I go through a phase where I just don’t want to.  I don’t want to count carbs, I don’t want to test, I don’t want to make the healthier choice and, of course, my BG sky rockets, I’m irretrievably cranky and I get that slightly blue pallor to my skin tone.  The experience in wholly horrible and completely self inflicted so I’m confounded as to why I let this happen.

Like the lady lizard in Rango, Beans’, propensity to freeze still when she gets worked up or scared, it must be a defense mechanism.  I’m a make your own fate type of person - always taking on a project or hosting or working - because I sincerely believe if you keep pursuing improvement, you will improve and there is deep value in that.  But then there is diabetes which, from a daily life point of view, heartily laughs at this idea and remains a constant in my life.

For a person who thrives on moving forward and new ideas, the drudgery of diabetes can be exhausting.  I take heart in the little improvements it offers like the dramatically better insulin efficiency that comes with exercise and will consider these victories.  A better A1C is always a decent goal too.  I guess I could always re-read Dr. Suess’ Oh the Places You’ll Go for a little push up out of the slumps.  What to do?

Just read an article summarizing the cool new stuff for Diabetes management previewed at the San Diego ADA convention and wah wah wah… there’s nothing great.  There are a few new connectivity gizmos and tweakings on the pod v. tubed pump but it’s all the same basic stuff we currently have - like any trend right now trying to bring back something from the eighties, enough already. Let’s bring something new and actually cool to the table.

The author and a bunch of commentators blame the FDA for being slow and unimaginative, which they certainly seem to be, but what about these bio tech companies?  My cell phone can all but cook and take a poo for me, so where is the basal cell innovation?  I’d love to read a summary of the ADA convention 2012 and see “bionic pancreas” described somewhere.

In the mean time, I’ll bolus for a slice of humble pie with my bionic pseudo-pancreas and gratefully check my BG.

This is what comes up when I google image myself - for real.  Hilarious and sometimes just how I feel… dumb diabetes.

What does one glucose meter say to another glucose meter?

HI-LO

Hahahahaha!

I’m an English teacher, what do you want from me?

I’m sure there are better diabetes jokes out there somewhere - maybe one about “organs” for sale or “pancreas-cakes” - who has one?

Self management is the pit and the peach.  It’s so personality dependent that one week I’m the model diabetic - counting carbs, testing, adjusting basal rates and never venturing over 115 - and the next I’m ready for a seeing eye dog and prostheses - no testing, roller coaster sugars and who knows what I had for breakfast?  And all the while I know better.

On the other hand, I get to call the shots and often know more than the experts in the room.  But even this fact both bolsters my ego and leaves me feeling stranded at the same time.

I can complain about my doctors’ lack of personal interest or insight (you know, you really need to get that A1C down; right, thanks for that), lack of general public knowledge (is that a pager?), lack of rage that Type 1 diabetes is growing exponentially without a distinct cause, or even my husband’s forgetfulness that I’m a diabetic (because I am so inconspicuous; aka don’t test much sometimes) but the truth is that it comes down to me.

I can either choose to make diabetes important and vigilantly manage it or pretend that I’ll live forever regardless.  Right, I need to get on that.

Anyone have any insightful ideas for staying vigilant?

I asked my husband today, “Can you help me - remind me to change my pump site when we get home?” and he responded, “Yeah, I guess, but I don’t really see why you need my help remembering that.”  And then the world exploded.

What’s the big deal?  Diabetics know exactly what the big deal is, I know you know.  But for the sake of others and my own therapy, let me break it down:

Changing your insulin pump site roughly every 3 days is important to maintain maximum insulin absorption.  The longer a pump site is left in, the more a person’s body builds up calluses around the site and insulin doesn’t enter the body as quickly or effectively.  This results in higher and higher glucose levels.

Changing a pump insertion sight is relatively easy: it takes 5-10 minutes depending, involves some paraphernalia like the pump, insulin and insertion gadgetry, and the act of poking yourself with a needle.  My husband has had intimate contact with this process as he changed my pump sites for me during the last few months of my pregnancy when my belly was stretched beyond belief and I couldn’t reach my own back.

Changing a pump site is not the sort of thing that you completely forget about but it is easy to put-off.  After all, who is ever eager to stab themselves?  Or stare at their pock marked belly?  Or grapple with the fact that their body is forever broken? and then do it all over again in 3 days?  Yeah, me neither.

I probably should have asked him to, “Help me prioritize my health and bravely confront my emotional demons and insecurities when we get home.”  He would not have had to ask “why” in that case and the world would still be in tact. 

But it almost brings me to tears even now writing that phrase and I have this secret hope that he will just understand and say yes. 

He’s been a part of some very intimate diabetic moments: inserting my pump sites when I couldn’t do it, coaxing and literally saving me through every imaginable low sugar scenario and hearing people ask why I’m wearing such an antiquated pager.  Even though he lives with me and all kinds of diabetic moments, he doesn’t live with diabetes and I suppose it really is too much to assume he’ll understand the weight of changing a sight or testing my sugar.  From his perspective, it’s just something you have to do.

And he is right.  This is the lot I’ve got and I just need to do what I need to do to manage it.  Even at this moment, I’m watching two people use support crutches to jostle into Starbucks because their legs don’t seem to work.  I should be grateful.

As grateful as I think I am, I still have an incredibly hard time accepting and dealing with all the emotional weight of diabetes.  Wearing it on my sleeve and explaining myself at what feels like every turn just adds insult to injury. 

Ugh, I know, get over myself.

What a weird disease Type 1 is.  It’s invisible to the untrained pump eye and yet ever-present, you don’t treat it - you manage it, and it makes your auto insurance go up.  One of the strangest things about Type 1 is that so many Endochronologists - the people who specialize in it - seem to know nothing about helping people live with it. 

If diabetics and their doctors are in a relationship, our doctors seem to choke, to put it delicately, when the date is over and we’re expecting some action.

How can this be?  Diabetes isn’t exactly unheard of or a freak occurrence.  According to the JDRF, nearly 3 million Americans have Type 1 and roughly 80 people per day are newly diagnosed.  Doctors don’t seem to be stupid people so how can they be missing out on this demand growth?

Maybe diabetes is boring for doctors since the best we have right now is glacial improvement with gadgets instead of grand gesture, biological treatments like chemotherapy or surgery?  (Having had cancer myself, I know that chemo and surgery are not to be celebrated but they do seem to have a certain sex appeal from a doctor’s perspective).  A successful pancreas transplant would not only do wonders in terms of a cure but might also bring in those bright, adventurous types the Endochrine specialties seem to be lacking.

Helping diabetics manage their disease also demands a lot of personal contact with actual people.  Lots of contact with people seems to be a major deterrant at worst and a chore at best for talented medical minds so there is another ding for frumpy diabetes.

It is as if Diabetes is the dime-a-dozen, wall flower girl who will make a nice wife one day but is too boring to take home tonight at the party.  The sexy, adventurous doctors go straight for cancers, heart disease and babies and poor diabetes, not wanting to go home alone, has to settle for the doctors holding the same beer for hours and laughing at their own jokes.  Good thing we only have to see them every few months.

It is what it is: doctors like data, grappling with problems that have solutions, and interacting with patients in high impact moments.  Fine.  I propose we change the system so diabetics have a fighting chance at the best medicine has to offer. 

Continuous Glucose Monitoring Sytems should be covered immediately by health insurance, patients and nurses should be trained to read and synthesize the CGMS data, and docs should be given this kind of precise, illuminating data prior to visits.  When I show up for my quarterly visit to my Endo, he or she will already know my EXACT trends, EXACT bolus and basal rates and have an EXACT recommendation of how I should adjust my insulin and eating habits.

I worked with an incredible team of nurses and Endochronologist at UCSD’s medical center when I was pregnant where we actually worked together as described.  I had a healthy baby girl and emerged from my pregnancy healthier and more empowered than I’ve ever been.  It worked like a charm.

Now I’m back to the usual, largely pointless Endo visits.  Having had a taste of what the pretty girls at the party get, I can’t go back.  Even though he doesn’t really know what to do with it, I’m putting on my metaphorical sexy dress and emailing my Endo my CGMS results monthly in a new effort to spice up our relationship.  You have to try right?

watercolourcocaine:

Apparently eating carbs help people sleep because when the blood sugar rises and the body pumps out insulin, the insulin triggers sleep inducing hormones like seratonin.  I guess we don’t get that.  Ha.  Life loves us.  </3

At an 8am dentist appointment today - not a time or place of great patience or understanding in my world - and trembling a little with fear I slid into that horrible chair with a deep sigh. 

The hygenist and I are acquaintances mostly.  We know perfunctory details like how many children we each have and that this is a second career for her, so her smile and “Welcome back” comforted me.  The second thing she said to me brought me even more relief, “You can start your music any time.”

Personal music at the dentist?!  How modern - this visit would be a breeze.  I happily scanned the machinery in front of me and patted the sides of the chair searching for controls and ear buds.  I looked up at her like an eager child, “Great - how do I start it?”

She paused with that scary metal scraping shepherds hook thing frozen in her hand and gestured with her eyes towards my pump, “Oh… isn’t that a music player?”

Ugh.  We are so not friends.

Diabetes comes with a lot of rules - count your carbs, eat the same thing at the same time, take this insulin at this time, and on and on forever and ever, amen.  Every diabetic knows the rules and can describe the toils and frustrating futility of forever having to follow the rules.  It’s not like other diseases where you can follow the treatment rules and stand a chance of being cured or beating it.  You just have to follow the rules or you’ll die sooner rather than later but you never get out of being diabetic.

So, a diabetic is left with an existential choice and it seems that the better a person integrates their treatment into their lives (follows the rules in a sensible, healthy, life-style respecting way), the more courageous they are.

Little kid diabetics are probably the most inspirational diabetic soldiers but they aren’t the type of courageous I’m referencing.

When kids are newly diagnosed they follow the rules.  Part of this is due to a parent having a lot of power over a kid and kid’s finding a sense of security in predictable routines.  Much like kids are purists about the rules of a game - “You can’t cross THAT line!” - they tend to be little dictators about their diabetes regimen. 

One parent I spoke with explained that her son felt a certain sense of power being able to tell adults how many carbs were in certain foods and what people should and should not be eating.  I know that when I was diagnosed at 12 years old, I couldn’t understand why my Mom was sobbing while the doctor explained what diabetes meant.  I was excited that I got to touch needles. 

Though being excellent rule followers does not quite qualify as courageous, there is something to be learned about the way kids seem to embrace diabetes.  It’s as if diabetes were simply a life rule change and the game must go on.

Then teenagers, the sages that they are, attempt to throw every rule out of the window.  While I think a little rebellion builds character and can be courageous unto itself, teens often take diabetic risks that are the non-diabetic equivalent of flailing wildly on the freeway because you broke a nail.  Outrageous or nonsensical rebellion, of course, is not particular to diabetic teens it’s just more dangerous.

A diabetic student of mine has a contentious relationship with her parents (shocking!) and has rebelled in typical teenage fashion: breaking curfew, illegally giving friends rides and even throwing a party with alcohol.  Not great but mostly innocuous acts.  When she starting using her diabetes to push back - using control solution to show good numbers when her parents checked, abusing the ease of a pump and not testing her BGs, pushing her BG high so she could leave class - it got serious and she was hospitalized for ketoacidosis and is dealing with an A1C of 19.

This is an extreme case but it seems that all diabetic teens experiment with rebelliously cutting corners - not testing, bolusing without really counting those carbs - mostly out of a sense of frustration and a misguided conviction that taking a diabetic break makes it go away.  Understandable but more self-destructive than courageous.

At some point, a diabetic comes to terms with the permanence of diabetes.  It stinks but, as one diabetic friend points out, it’s better than being dead.  Mature type I diabetics seem to mostly follow the rules - sometimes zealously and sometimes barely - but they don’t act with the adolescent assumption that they are invincible. 

That’s not to say adults don’t cheat.  I know I leave my pump site in for way too long just because I don’t want to poke myself, I work through lunch and don’t test my BG more often than not and exercise and I have a distant relationship. 

What seems to make the mature diabetic (maybe not necessarily measured by age) different from the kid or the teen is that they are aware of the larger implications of their actions.  In other words, they count carbs when they don’t want to because they know what that leads to, they ask their doctor lots of questions instead of rushing to get the visit over with and they carefully test their BG knowing that years of perfect numbers still won’t cure their diabetes.

Like Sisyphus must have heaved a heavy but determined sigh preparing to roll his rock back up that damn mountain, we diabetics must bravely test and dose and count and test and dose and count and on forever with a determined sense of courage.

1.  Go to diabetes camp or a really intense “how to be a diabetic” education session at the local hospital. 

2.  Eat a row of thin mints with bolus gusto but don’t repeat until next Girl Scout Cookie season.

3.  Get a pump - at least for a little while so you know.

4.  Have a Continuous Glucose Monitoring experience.  Yes, it’s another gizmo that makes you feel robotic but it’s feels sooooo good to be this close to having a working pancreas.

5.  Allow yourself the maniacal consideration of farming your diabetes out to that shady medical study paying $5,000 with out actually making the call or signing up.

6.  Get a dia-buddy (other than Nick Jonas).

7.  Find a friend that could actually use the Glucagon if it came down to it.

8.  Trade “you did what?!” low sugar stories with someone who gets it but isn’t trying to be the dumbest diabetic in the room.

9.  Fight the insurance company, sending them appeal after appeal, until they pay for that insulin or strips or pump or CGMS that will only make you that much healthier.

10.  Write about being diabetic on tumblr.

What am I missing?