I have now seen my new doctor twice and I’m not sure I will get over this one thing they do at the office.  It’s completely threatening to me.

As soon as I arrive to check in, someone I do not know takes my meter.  (LOL, the woman yesterday asked me if I use a glucometer and I just stared at her, blankly, trying to figure out what she was talking about.  First, what on earth is a “glucometer” and second, WHAT DO YOU THINK I DO, DIABETES DOCTOR’S OFFICE.)

Well, deep breath, that’s okay.  I have a lot of meters.  (I guess I mean: I have a lot of ‘meters.)

So I go through the check in process just fine, they check my weight, temperature and blood pressure, and put me in a room.

But then, OMG, then they take my pump.  And they leave the room.  With my pump.  And I’m not going wherever they are going.  I’m in the room.  Without my pump.

And, if you can’t tell, by now I’ve started to mildly hyperventilate a bit.  Because, um, excuse me?  My pump is not attached to me.  My pump.  Not attached.  To me.  And I don’t know where they’re going with it.  In their (I’m sure not) grubby little hands.

And then they take I am not kidding you FIFTEEN MINUTES to do whatever they’re doing before they come back into the room and return my pump.  And it isn’t like I can check my blood glucose on my meter to see how I’m doing…

…probably wise they checked my blood pressure before they stole my pump.

Yesterday my doctor came in while my pump was wherever it was (missing me, I am sure, while downloading all kinds of information my doctor could review with me).  I almost couldn’t talk to her!  She chuckled and said many of us are like that about our pumps.  She pointed out I disconnect every day when I take a shower.  I brilliantly countered that I still have it in the room when I take a shower.  (By this point my brain may have been a little deprived of oxygen as I was still hyperventilating a little.)

Short story long, then I got my pump and meter back and immediately reconnected and checked and was back in my happy place, so my day could continue.

But I’m not sure that I shouldn’t be bothered by my inability to disconnect from my pump and relax. 

With fast acting insulin, if I need to disconnect for more than 45-60 minutes, I need to take insulin to cover the basal insulin I will miss.  This means swimming and spa treatments (who am I kidding I never swim– I’m only talking about the rare trip to the spa or hot tub or even a long bath) will always include for me a quick reconnect and small bolus. 

Yes, I’m always aware of the clock.  The nice part of pump life is that I don’t need to stay connected to a watch to time my insulin shots, but I do need to be aware of the time I spend away from my pump because that is time without insulin delivery. 

And really, that fifteen minutes had zero effect on my blood glucose.  That isn’t what it was about.  It was about me not attached.  (Did I mention I couldn’t even see my pump??)

So you know what?  I’m going to ease up on myself.  I’m okay with the fact I am more comfortable when my pump is around: it has been an amazing tool for my management of my disease and I have to do more work when it’s not connected to me.  I am going to be okay with the fact that when someone else takes an extension of my body into a different room I’m going to be anxious until I get it back. 

But I don’t think I am ever going to call that thing a “glucometer”.  It’s my meter.  My pretty little currently blue meter. 

I think tomorrow I’ll switch to my purple one.  Maybe my green one, for Spring.

(Have I mentioned recently that I am not a doctor and I cannot give medical advice?  If you see a good idea you want to try, check it out with your doctor first.)

Phew.

I saw my doctor this morning.  I was nervous.  The past two months have been far from stellar for me, in terms of eating, exercise, and keeping my numbers in range.  And last time I saw my doctor, she had many things for me to change (most of the changes have been great).  Granted it was the first time I saw her, but it was not what I’d call a relaxing visit.

So I was nervous about today.

But today, it was almost like she read my post about doctors—she gave me several tips from other patients that I can actually use!!  Amazing!!

Tip One: when my pump factors in the insulin I have on board already with its “active insulin” calculation, it doesn’t recognize any insulin I took from an Easy Bolus!!  Cripes!  I had no idea.  This will undoubtedly save me from some lows.

Tip Two: she wants me to look at (and respond) my pump at least once an hour.   (I really think I must do this; it feels like I am always checking what time it is and what my pump says!)

Tip Three: If my CGM says I’ve got a single up arrow and I’m bolusing for food, she wants me to increase my bolus by 10%.  If I have double ups, increase the food bolus by 15-20%.  I am to reduce the bolus by the same percentages if the arrows are heading down.  I’m not sure how often I bolus for food and my CGM has arrows, but I’ll try to remember these.

Tip Four: if I eat a high and fast carb, take a shot to get it working quickly and avoid the spike, but simultaneously lower my basal for 2-3 hours to avoid going low.  Hadn’t thought about this one, ever.

I am still amazed how much I don’t know about using my pump to my full advantage. 

Make sure when you see your doctor, you share your experiences with your entire medical team—you never know who your ideas and experiences might help!!

The ADA reported today on a study published in the Journal of Adolescent Health about teens and type 1 diabetes.  Researchers followed 147 teens and their A1c levels as they moved from teenage years into young adulthood.

The study concluded that not only do teens have to face the typical stresses of adolescence, but they have to deal with increased responsibility for their disease: “a rise in HA1c levels is common in adolescence and early adulthood, researchers noted, as patients with type 1 diabetes transition from parental guidance to personal responsibility in managing their blood sugar levels.”

Okay.

Few things.

1. Duh.  (I can’t believe people get paid to conduct some of these “studies.”)
2. No mention of hormones… or how fluctuations in hormone levels affect blood glucose levels.  You’d think a study about teens and management of blood glucose levels might mention hormones.
3. No mention of emotional stresses between parents and teens, and how emotional stress affects blood glucose levels.  Strike two.
4. No mention of how many of those emotional stresses are directly related to the teens’ diabetes and their self management.
5. Props for the title “Managing Type 1 Diabetes Can Stress Teens” yet I still see the word “control” running rampant throughout at least the abstract.  (I couldn’t access the full Journal of Adolescent Health article online; if you have it, please send me a copy!!)

Apparently teens don’t check their blood glucose as often as they did when they were younger and when (I assume) their parents told them to check and they were still doing whatever their parents asked. 

This would seem pretty obvious to me.  Teens don’t think a whole lot about managing their body on the whole, with or without diabetes—they are busy figuring out how to navigate into adulthood and more importantly, where the car keys are! 

But here is what I’m looking at. 

We need to find for you and your family a way to remove diabetes as a hot spot in as many interactions as possible.  Clearly, parents are better able to see diabetes as a lifelong disease for their son or daughter.  Yet parents are also so full of love for their son or daughter that perhaps there are times they can’t see ways they really might help.  Use your experiences and really listen to your teen and try to figure out what help they really need to deal more directly with their disease.

I’m not saying stop caring, and I’m not saying stop checking.  Sometimes, though, it’s important to recognize that your teen may be doing as much as they can do with their diabetes at any given moment, and unseen factors like stress and hormones may well be working against those efforts. 

Keep up the work you all do to recognize that a check is just gathering data and not a chance for a value judgment.  Recognize that your love for your teen and your need for them to stay healthy despite their disease may feel overwhelming to both you and your teen.  Recognize the efforts they already make every day.  They won’t always make the “right” choices when it comes to their disease.  They won’t always make the “right” choices in any aspect of their lives. 

Love them anyway, with open arms.

I went to a talk last week given by a type 1 psychologist (you may have read my earlier post stealing from an article about her).  She highlighted her own experience growing up with diabetes, and many of us in the audience (too many) could relate.

It doesn’t just happen to kids.  After being diagnosed with diabetes, we have all faced a doctor or health care professional and gotten that absolute sense of being evaluated, judged, and found not worthy.

Is it something we did?  Maybe. 

Probably not.

Is it something we didn’t do?  Maybe. 

Probably.

Is it something we should have done?  Maybe. 

Maybe not.

Does it make us see the healthcare professional as our ally in our fight for health and normalcy? 

Not me.

Does it make me have confidence in their knowledge, skill and expertise? 

Nope.

Living with diabetes is not something I can do by myself.  I need as much help as I can get from people I can see as my ally, my friend, my advocate, my resource, my guide.  That is a fairly tall order for anyone to fill, and when I need my doctor to fill this role, perhaps I am asking too much of someone I see for less than an hour every few months or weeks.

I know there are some out there who can fill my tall order with gusto and with grace every day; my hat is off to you.  Thank you.

It’s the ones who far outnumber you that concern me.

Because here is what I do need my doctor to be: understanding of the complexity and unforgiving perpetual nature of life with diabetes.  That most often, I do nearly everything I’m supposed to do, and after a while, someday the plan that was working so well suddenly no longer works at all for me.  That there are so many factors—seen and unseen, known and unknown—that there is no way for me to both live my life and manage my disease 100% of the time with 100% success.  It makes me want to cry in frustration more often than I care to admit.

I need my healthcare professional to understand that most of the time it isn’t my fault that I’m not in range.  I’m not trying to be irresponsible or deny my critical role in my disease management; I’m trying to be understanding of the fact that I can’t always see a kinked infusion set under my skin or a site stuck in scar tissue or even an infection that has not manifested itself.  I’m trying to accept that those unseen unchangeable factors may just add together and shorten my life.  While struggling with that understanding and acceptance, I don’t need a healthcare professional to purse their lips and remind me that I should keep my blood glucose readings in range.

I do need my healthcare professional to know about even more ways something I haven’t thought about may affect my blood glucose levels, and perhaps offer ideas and suggestions for ways I can head off or even avoid the resulting swings. 

I need them to share the experiences they and their patients have had when faced with similar situations and similar road blocks and similar slippery slopes.  I want to know that others are like me and that others have had days of success with the various tools my doctor shares with me.  I don’t need to hear “my other patient could do it” because even though my doctor maybe didn’t say it, you can bet I heard the “so why can’t you”.  I need to know how, and hopefully why, and what else I can try.

I do feel sorry for the healthcare professionals, though.  They have to say the same things to different patients nearly every day.  That has to be hard for them.  Not as hard as living with diabetes, sure, but still, not a fun part of the job.  I’m sure they’ve heard the same complaints and an unfair number of whines for as long as they have had patients living with diabetes.  I do wonder how some of them get from that to judgmental, though.

The basic truth is: I’m not here to waste your time or to make you angry, Doctor.  I’m just a person who needs your help.

So hold the judgments, please.  I’m doing the best I can.

I would like to add that one of my doctors, Joe Prendergast, is one of the good guys.  I appreciate his efforts throughout his career to empower his patients with his constant message: IT IS OUR TIME.  Thanks Dr. Joe!

I had a friend ask me yesterday, as we stood in front of a bakery counter, if I could really eat the food in front of me.   As I had invited her to this café for lunch, the question would perhaps have seemed strange.  However, it was one I have been asked countless times before so I knew why she was asking—she understood “diabetes” to mean “stay away from sugar”.

A lot of people do.

It’s why I wish I had a dollar for every time someone asked me if I should be eating whatever I am eating, or if I can eat it as I put it in my mouth. 

Yes.  I can eat sugar.  No, I did not get diabetes because I ate a lot of candy.

Come to think of it, isn’t it kind of rude for someone to ask me?

It absolutely is rude, but knowing that doesn’t really make me feel any better.  Sure; I can feel like someone is incredibly impolite when they shout across the store “do you have your garage door opener on your belt?!” and I can be offended when someone insensitively says “I could never take a shot!” or makes one of the myriad of comments I am sure many of us have had to endure.

The thing is, I don’t want to be offended.  I don’t want to feel like I should hide from my disease or not acknowledge what I live with or what is attached to me or what it takes to literally keep me alive every day.  I see no need for an emotional response; I have enough of those in my life as it is.

So, depending on the time I have and my willingness at the time, I will respond to each of the comments and each of the questions.  Sometimes with a simple “yes” or “it’s my insulin pump” or sometimes I will outline the basic differences for the questioner between type 1 and type 2 diabetes.    I generally keep at least a small smile on my face.

I always want to say “you’d be amazed how easy it is to give yourself a shot if your other option is death”—but that’s just me being snarky with that particular comment I heard so often on my return to fifth grade after my diagnosis hospital stay.

I’ve replaced “blood sugar” with “blood glucose” in an effort to separate the word “sugar” from any reference to my diabetes.  I know this is a losing battle, but it makes me feel better to avoid contributing to my own frustration, so I keep it up.

But still, a dollar would be nice.

I’ve never been any good at keeping a log of my numbers.  It doesn’t help that my doctors wanted me to when I was a kid and teen.  (Not so good at doing what someone else wants me to do without at least one Very Good Reason and a lot of Instant Rewards.)

I’ve always considered that keeping a journal of my numbers, activities, insulin, food, and feelings was not as important as living my life.  I can do it for a few days, but the thought still makes me unhappy. 

My Anal Self doesn’t like my Options (and I’ve looked at and designed a load of journals)

The little boxes with the little times on them—if I check at 9:13am and then again at 9:50am, where do I put those two meter readings?  At the 9am?  The 10am?  What if I then check again at 10:30am?  Where do I put that number??  Some of the logs have only four boxes- Breakfast, Lunch, Dinner, and Evening; that system isn’t ever going to work for me!  I check my blood glucose 8-12 times a day, and rarely at the same times.

The little boxes for “exercise”—do you want me to write in what I did?  Really??  Where do I put what my meter reading was when I was on mile 4 of a 6 mile run?  What do I do when I’m leading bootcamp or when I go to IKEA?*   I’d rather just exercise and keep moving instead of trying to figure out how to record what I’m doing.

The food journal.  It is a great idea, and rather helpful when trying to lose weight or catch an unknown pattern, but for a daily log of my life, can’t I just skip it?  Writing down the number of carbs I ate isn’t enough information, since it matters what I ate along with those carbs.  (Was it straight crackers, or was it crackers and cheese?  Those two snacks will affect my blood glucose differently.  What about the veggies?)

On my pump, writing out each bolus feels cumbersome.  Yes, I have a record in my pump that I can easily transcribe, but again, transcribing seems like maybe not the best use of my time. 

Back in the day before I was on a pump and when my mom was in charge of the food I ate and I kept my meter at home, it was probably easier to keep a log.  But for the past fifteen years or longer, it just hasn’t made much sense for me as a way of life. 

Overall, I just think I’m not a Record Keeper

I just am not good at writing down what I do.  I’m not good at taking photographs, either.  I tend to see both as a kind of distraction from participation in my actual life. 

And yet, the diabetes log looms at many doctor visits.  It is a great tool for someone else to look at to evaluate my choices and decisions.  (Great.  Just what I need after 22 years of school; more evaluations.)  I really do see that it is a great tool when I’m having trouble with a certain time of day or can’t see a pattern. 

The smart CDEs have asked me to just keep a log for a week.  The smarter engineers have built meters and pumps that can download all my information to a computer for my doctor.  (Thanks for that!)  My favorite doctors, of course, are those who can read the computer printouts and have never asked to see anything I have written down.

For now, I say thank you to everyone who has ever tried to ease my record-keeping burden or erase it altogether. 

And if we ever go away on vacation, you’re the one in charge of the camera.

*I go low at least once every time I enter that store.  I don’t know why.  Magic doors?  Insulin spray circulating through the vents?  It happens at every IKEA location I’ve ever been.