On my facebook pages, an ad for the JDRF comes up all the time.  Seeing the ad makes me want to smack it.

Type 1 diabetes is a chronic, debilitating disease affecting every organ system that can strike suddenly. Are you T1D Aware?

Well, yes, I would say that I am T1D aware.  And given my experience, type one did not strike suddenly—it made me pretty darn sick for a long time before I was diagnosed.  (I see my school picture from fifth grade, taken in September, and I don’t look like myself in any of the other years.  I wasn’t diagnosed until March.  That isn’t sudden.)

Chronic, yes.  Unending, yes.  It’s my life.

Debilitating?  DEBILITATING?!  (I’ll get back to this one after I count to 10 and take some deep breaths.)

Affecting every organ system?  Yeah, can’t help that.  Every part of my body is connected to every other part.  I’ve got a major flaw since I have no beta cells to monitor the glucose in my body.

So this is one of the reasons I’m not a big supporter of the JDRF.  For one, I think the need to find a cure is too easy for people to focus on rather than learning to deal with their disease, or their child’s disease.  (How happy with yourself and at peace can you really truly be if you are always asking for a cure to take away your diabetes?  What are you teaching your child when you walk for a cure?  Most likely, they don’t need a cure as much as they need your support and acceptance of their disease RIGHT NOW.)

This other reason comes back to the “debilitating” portrayal of type one diabetes.  Seriously; a foundation built upon the notion of supporting people living with type one diabetes is the one out there using the term “debilitating” and all the connotations of weakness or “less than” that goes with it simply misses the mark entirely for me.

I don’t need a cure.  I don’t need to be associated with an organization that refers to my diabetes as something that debilitates me.  I don’t think my diabetes de-anythings me!  I understand they are trying to play up a sympathy card with these dramatic words and dramatic imagery, but it offends me.

JDRF, take a good look at the type ones around living and loving and learning and really embracing their lives.  Take a good look at ME. 

I guess I really should say: enjoy the taste of my dust.

 (Got this question on facebook yesterday and decided I had enough to say in response I might as well blog about it.  Thanks for asking, and I hope something here helps you out somehow!!)

What do you do when your insulin pump company fails you and won’t send you supplies?

My first reaction when I read this question was to question “How does a pump company fail anyone?  What promises does someone think they made to you?”

But I do recognize that I have been disappointed in MiniMed for several years; after Medtronic purchased MiniMed I felt their service levels changed.  I now spend a minimum of 30 minutes on hold before I can speak to anyone.  That disappoints and frustrates me.

And that wasn’t really the question.  Seems to me the question was based on a current crisis.  Even if it isn’t a real crisis (maybe you still have 3 weeks of supplies), it most assuredly feels like a crisis!  I do hate that—as if we don’t have enough to think about, we spend time worrying if we will get our supplies in time.

But really, a pump company will hold up supplies usually for two reasons.  One, there is a problem with your prescription for supplies.  Perhaps it was unclear, perhaps it expired.  Either way, they won’t send you a thing until your doctor okays it.  Two, there is a problem with your account.  Maybe they missed recording your last payment, maybe your insurance changed, or maybe there is some wacky hold on there for some reason.

But the bottom line is you need to take care of this as soon as possible.  If that means calling from work, that’s what it means.  If it means calling your doctor’s office and asking them to call the pump company to straighten out what they need, that’s what it means.  It simply will not get resolved without your repeated efforts to get a response from the pump company.

And yes, this is one of those things that just completely bugs me about having diabetes.  Seriously.  We all deal every day with everything we EAT, everything we DO, everything we THINK ABOUT, and we pause our lives several times a day to check our blood sugar levels.  And this is what bugs me: having to stay on top of the administration of my disease. 

But that’s the truth: no one else is going to care as much about your own health as you do.  No one else is going to stay awake worrying if you will get your supplies on time or not.  (I imagine they are busy worrying about their own health.)  So it really is up to you to take care of the administrative side of your disease.  (Maybe a spouse can help, but even that can get complicated these days with HIPAA.) 

My suggestion and response, then, is to 1) recognize that the pump company is a company and not someone who owes you anything or can fail you on a personal level; 2) recognize that any problem you face with getting your supplies probably has a simple root hidden amidst the tangled mess you see now, and 3) recognize that no one else has the same motivation you have to get resolution.  Ask for help from your doctor’s office; ask for help from the customer service people at the pump company; ask for help from anyone you can think of! 

Good luck getting a resolution and more importantly, getting the supplies you need!

I’ve been reading comments about various things I’ve posted on Facebook and I’ve seen a theme among some people: they wish their family did something or didn’t do something or helped in some way, and they are frustrated by their family’s response to their disease.

I can understand that.

I always kind of assume my family knows what I think about when it comes to food.  I learned the hard way how wrong that assumption was when I sat down to a family meal a few years ago and asked my mom how much sugar she had put into some dish.  She told me and I calculated the appropriate bolus.

Ten minutes later, I took my first bite and turned to her and asked her the question again.  I pressed and said “real sugar?” and she then said “yes, well, Splenda!”

Whoops.

I have a number of these same types of stories and I’m sure you do too.  It does seem to weaken my trust in my immediate family members when I realize they just don’t even think about what I have to think about all the time every day. 

But on the other side, I’m not sure they need to think about all of the ins and outs.  I already need to think about my disease continually in order to preserve my own health; I’m not sure why I should need them to do it as well.   

I’ve used each of these surprises with each person as an opportunity to teach my family members what they missed—was it that I can’t be without my insulin pump for more than 30-45 minutes?  Or that I need to know accurate carbohydrate counts so that I cover the carbs with my insulin?  Or that I can’t take a surprise hike after dinner to an unknown destination up a hill 4 miles away with only 5 glucose tabs? 

Does it mean having to explain to a family member that the comfort you once found in cookies now carries a heavy burden instead of the comfort they intended to offer?  Does it mean you have to teach them about what happens to your body when you have a high blood sugar, or a low blood sugar?  Does it mean they need to learn from you how you want them to treat you, all over again?

It most assuredly does.

You are in charge of your diabetes.  You are in charge of how you see your disease, and how you see yourself with it.  You are in charge of how you handle yourself when it comes to your family’s reaction to your disease. 

Are you going to stay quiet, internalize and complain later?  Forever?  Are you going to get through whatever crisis it is, and come back the next time with a different attitude to explain what it felt like when they didn’t recognize your constant fight with your blood sugar levels?  Does it mean you invite them to your next doctor’s appointment so they can hear what you hear every few months?

Maybe so.  Because I promise you they are never going to understand if you don’t take the time to explain.  And explain.  And explain again.  They already love you and want to support you as best they can, so what do you have to lose?

While I was at the DYF Fall Education Retreat this past weekend, I observed the family interactions throughout the days and during various activities.  I was really kind of pleased with what I saw!

The families were relatively young families, with kids ages 3-13 for the most part.  This means that for the most part, kids were still on speaking terms with their parents… the Teen Years hadn’t fully hit yet!  (There was a simultaneous teens-only program running in the same place, but I wasn’t involved in that one.)

What struck me the most was how many conversations parents were having with their type one kids.  As an adult I don’t really have many conversations at all about the numerous diabetes-related decisions I make in my day.  If I did have them, I would have a LOT of them, and the person I had them with would have to be just as knowledgeable about the disease as I am.  What a tall order!

As an important aside: I can see, too, how these conversations throughout every day (starting with: what did you eat, what was your number, do you want to check, how much insulin did you take, how much do you want to take, are you going to play kickball, and on and on) with one kid can affect the other kids in the family who do not themselves have diabetes.  I remember being very young and jealous that my sister got to go to art class and piano lessons and go out and do activities and come back and report on them around the dinner table; I wonder how the jealousy manifests itself around a dinner table affected by type one diabetes.

I’m never one to say it is easy to live with type one diabetes.  I’m never one to say it is easy to be a parent of a type one kid.  But I hope I’m often one to applaud (quite loudly but never loudly enough) those who are making the best of either situation.

So, no matter what, keep talking.  Keep talking as long as you can.  Even when they stop responding, and even when you wish they hadn’t responded in a way they just did (I heard “who is this thing and what did they do with my adorable child” a couple times this weekend in pre-teen talks), keep it up.  Keep it up if only so they know later that you are there if and when they need someone to be there.

Yes, it takes a lot of thought to be a type one kid.  It takes a lot to be a type one adult.  It takes a lot to be a parent, and a parent of a type one kid. 

And yes, it’s all worth it.

My  quote on Facebook  this morning was a Spanish proverb that translates: A man too busy to take care of his health is like a mechanic too busy to take care of his tools.

Someone mentioned how easy it is to lose sight of how important it is to take care of our health.  It is so easy I think we all could use a little reminder most days!

But I think having diabetes, either type one or type two, just complicates the idea.  First of all, do we consider ourselves “healthy” to begin with?  And secondly, we can never escape taking care of our disease so don’t we get credit for that?  (Of course we do!)

I think oftentimes we feel like we “fight” diabetes in our own bodies.  The explained and unexplained blood sugar changes have spent years teaching us that our body really is a battleground.  The weapons on both sides include finger pokes, needle jabs, low sweats, high dry mouths, dropping anxieties, climbing moments of apprehension, expired insulin, scar tissue, beeps, alarms, dried up jelly beans, cans of Coke, old test strips, and a zillion other minute and ever-present aspects of our lives with diabetes.

So isn’t it enough that we fight that fight every moment of every day?  Why should we have to fight even MORE to take care of our bodies?

Well, I don’t really have a good answer for that.  I think the best thing for each of us to do is simply shift our perspective on what life is like when we live with diabetes. 

We have a constant “fight” with diabetes that will never go away.  There are a load of ways we can equip ourselves for the battle, though, and assure our victory.  Most of them are not quick fixes and will take some continual tweaking over the course of our lives, but it’s good to get a start as soon as we can.  Diabetes doesn’t take a break and neither should we if we want to keep the upper hand.

I think first off, we need to learn to accept the disease.  One of the parents in the video about Bearskin Meadow Camp and the Diabetic Youth Foundation said he learned how much better it was for him to see a high and deal with it rather than agonize over the why behind every single one: it’s a high, there will be more, and let’s take care of it as soon as we can so that we can continue with life.  Keep management of the numbers as realistic as you can, and forget the concept of “control”—it isn’t possible to control any aspect of our diabetes.  If you were the boss at your job, would you think you controlled your employees??  Kick the notion to the curb and pick up the idea of “management” instead. 

After that, we need to also take care of the rest of our bodies.  Just because we have this “fight” with our disease doesn’t mean that we can ignore our muscles and bones any more than we can ignore the dirt and grime in the bathroom just because we’re doing a great job at keeping the kitchen clean. 

Life just doesn’t work like that.

We can work together and get your body up to speed when it comes to physical fitness since the strength of your physical body will certainly help you succeed in battle.  You need as good a support team as possible to keep up your fight!  The health of your body depends on it.