I’ve done my share of forgetting to bolus over the last 15 years I’ve been on the pump.  I remember forgetting to take shots every now and then, too.  I’ve found it much much easier to forget to take boluses though.

Even setting those pump alarm reminder things doesn’t help; I rarely see an alarm and fully process it anymore! 

But how, if you are a parent, do you help your kid remember to check and bolus and do all that stuff? 

I know you want to nag and plead and yell and scream and just basically communicate to your son or daughter how desperately you hate that they have to deal with diabetes at all, and how very much you so want to take it from them and place it on yourself instead. 

But that isn’t possible.  And I think what comes across to a kid is an entirely different message altogether.  One neither of you wants. 

Here is an idea that might work in your family.  Do you have other ideas?  Keep the lines of communication open and as worry-free as possible.  Make it about your son or daughter’s ability to grow up in a fun and smart way, and let diabetes take back seat every now and then.  A managed disease flows from a manageable mindset about what it all takes, and a lot of love and caring. 

Help your caring show through more than your concerns by frequenting places like ParentingDiabeticKids.com.  Although I don’t agree with everything they say and each message that they give across to parents of kids with diabetes, I think I need to step back off my soapbox and just get you the tools that will help you, and help your kid.

Just because I do a lot with my diabetes doesn’t mean it’s easy.

I don’t let it stop me, but it absolutely tries to, several times every day. 

Over the past few years I have started to share more of the basics of living with diabetes than I have in the past.  I think part of that is growing up some more, and some of it has to do with the fact it feels like I’m putting down more roots than I have in the past. 

I had a friend in my first year of law school say to me that she knew we would be friends for a long time, so she wanted to learn more about my diabetes.  A year later she said it was still a lot to learn! 

I don’t ever want to shy away from explanations, yet sometimes it feels like maybe I’m not getting my point across.  I feel kind of badly when I only explain part of something, but that’s the only way to do it.  There is simply too much information and too many factors to ever explain what it’s like to live with insulin dependent diabetes.  I spend some time explaining something and when the other person repeats it back to me, I smile and say “yes; most of the time” or “yes; when it works” or “yes; at least for a while until it changes.”

There are so many aspects of living with diabetes that really do require an adaptation of an additional sense to manage it.  I’m always factoring in my last reading, the reading before that, what I ate, what I did, what insulin I took, and on and on and on just to come up with a number where I think I’m at.  Then comes the actual checking (most of the time) and doing something about it (some of the time) or setting a mental note to remind myself to do something in the future (the hardest part, for me) and resuming the rest of my life.  Then it starts all over again, and the cycle repeats several times throughout the day and night. 

So sometimes I miss something in a conversation, or I come across a little scatterbrained, or I have to take a moment to remember what day of the week it is.  I have to remind myself that not everyone has to manually function for their pancreas like I do.

(And this is all when my numbers are in range; the swings are another thing altogether!!)

My weekend this weekend involved a few conversations that were oddly juxtaposed in my mind for some reason.  My sister hadn’t understood that I was applying for a service dog for my own disease and what and how I could benefit from having a service dog accompany me everywhere.  I also had a friend ask me if the 142 meter reading I posted to Facebook was a “good” number or what the numbers even really mean.  I also walked to a neighborhood fun run yesterday and had only factored in my insulin for the run itself, not for the 20 minute walk to the start line, so my numbers weren’t where I wanted them for the run.    

I can understand why we often keep our diabetes to ourselves.  It’s a huge thing to live with diabetes and when it feels like someone doesn’t understand, or that someone else could have seen something coming (like the walk to the start line) because they only see a small portion of the disease and not the entire thing, it somehow makes the disease feel heavier to carry.

At least it did for me over the past few days. 

I’m not sure what exactly I can do about that, either.  I’m sure I don’t ever want to not respond to a question.  I’m also sure that I want my family members to have enough of an understanding so that they realize, deep down, that diabetes is a serious disease and it’s through my determination and hard work that I do as well as I do. 

I also want to spend more time with others with insulin dependent diabetes.  THAT is something I know makes my disease feel lighter to carry.  No explanations.  Some sharing, but the rest of the time just being.  Because we all understand that we each are truly doing our best to function with so many variables and oddities and just plain screwey things that happen that it’s amazing most days we can make it through the day without yelling or crying or screaming (or all three).

Go us, working so hard.  We rock.

We are all experts at a lot of different things.  I sometimes forget that, especially when it comes to food.  I think we all know about carbohydrates.

My sister sent me an email last week; she was having dinner guests and one of the guests has type 2 diabetes.  I’m not clear if the guest asked for anything in particular, but my sister wanted me to look at the menu because she was worried the menu was “too starchy”.

So here it is:

-Potato and rosemary flat bread (made with gluten-free pizza dough–I KNOW that’s starchy!)

-Herbed carrot soup (has one potato in it for 6-8 servings; no cream, just veggies–but are carrots starchy too?)

-strawberry and lentil salad (the lentils and goat cheese and pecans are the protein, but are lentils also starchy??) 

My sister knows what foods have gluten and what foods have dairy; she has determined that for her, she does better when she avoids both food groups.  It was kind of funny to see that she was having a hard time coming up with a menu.  I assumed she was well-versed in all food counts (carbohydrates, proteins, fats).  I guess not!

I do the same thing with the rest of my diabetes.  I assume others struggle with blood sugar levels and highs and lows all day, every day.  I assume I’m like everyone else, a lot of the time.

It only takes this emailed question from my sister to remind me what happens when I assume. 

I guess I assume everyone knows what I know about living with diabetes because it just makes my life easier and makes me feel less alone when I struggle.  I took the evening off of a work function yesterday because I have had several extreme lows overnight during the last week and haven’t slept well as a result.  I appreciate that I feel comfortable saying that to my coworkers, but at the same time, I’m not sure I like taking the time off for a diabetes-related reason.  Then again, I haven’t been sick all year with a cold or sore throat, so I guess it evens out in the end.

Still, I should remind myself that living with diabetes and functioning for my pancreas does take time, energy, and knowledge of a lot of different things that most people don’t know about and don’t have to know about.  I should remind myself that I deserve a pat on the back and sometimes an extra hour of rest when I need it.  I should be okay with asking for what I need, and not assume others know what I face. 

Because you know what happens when you “ass-u-me”!

 (For the record, I suggested my sister add a rotisserie chicken or roasted asparagus to round out the meal.  I’m not sure what she ended up serving; I just know that usually when friends have dinner together, they aren’t getting together for the food.  I’m sure it was a lovely evening all around.)

The founder of Dogs 4 Diabetics, Mark Ruefenacht,  gave a little welcoming speech at the graduation on Saturday.  He said that when he first started D4D he’d tell people what he was doing and would sometimes get the question “what are you doing that for; the cure for type one diabetes is right around the corner”. 

You know, every single person over the age of 15 in that room let out a groan. 

We laughed, but I don’t think it was funny.  I think it was sad.  We had all been duped after being diagnosed into believing we just had to hang on a little while longer with this disease and wait until we got closer to that corner and found the cure.

Just a little while longer.

Yeah.

We all have to hear from our friends and loved ones that they’ve read or seen that some good research is being done on mice, or stem cells, or what have you.  We all endure the headlines saying you can cure diabetes by eating blueberries instead of ice cream.  We all have to do all of this with a smile on our face and a syringe in our hand.  It’s what we do.

Mark said he responded to those who questioned why that he had lived with diabetes for forty some years, and that cure had been just around the corner for forty some years.  He wasn’t waiting.  He was being proactive and doing something to improve the lives of diabetics NOW.  (and wow has he succeeded)

I’m not waiting either.

So you know what?  I’m making that my cure for diabetes.

I’m going to say I have cured my diabetes; it feels like I have.  I’m not fighting why I have it, I’m not fighting when can I get rid of it; I’m just going to say okay, this is what I deal with. 

I’m going to say, you know, I understand my feelings of bitterness about my earlier misplaced hope and misdirected energy towards that old cure, right around the corner.  But none of those feelings ever actually HELPED me live with my disease.  So I’m acknowledging them, and moving forward.

I’ve said this before: if you think you just have to hold off dealing with your disease for a couple years and you’ll no longer have diabetes, no kid or adult is going to deal with their disease.  Type 1 diabetes doesn’t get better.  It only gets easier to live with after you can realistically fit it into your life, learn to live with it and really move toward a life you love.

So what if that right there is the cure?  Maybe then we can act to improve our lives with or without our disease. 

Let’s go!!

 I got to participate in an amazing thing this weekend; I was invited to attend a graduation. 

Not just any graduation. 

Half of the graduates had worked their entire lives to get to be able to work for the rest of their lives, and it required a more skill and training than most jobs any of us hold.  The other half of the graduates had worked alone for as long as they could remember and had spent a lot of time feeling afraid or at least apprehensive of what went on inside their own bodies.  Those graduates, too, had to put in a lot of hard work and learn a lot to be able to work for the rest of their lives with their partner. 

I think all of the graduates loved nearly every minute of it.

Dogs for Diabetics.

When my friend and I arrived at the ceremony, I was 104.  I had had a juice box in the car on my way there because I felt I might go low and didn’t want to be low in this room with all kinds of dogs trained to sense and alert when I was low. 

So I’m sitting there, and the guy across the aisle from me is talking to his dog and trying to get his dog to sit still.  It was kind of funny because I think the dog was alerting my low; I felt somewhat embarrassed and thought I should have said something to the man. 

I wasn’t low, though, according to my meter.  I was just headed there.

My CGM has been a help to me—I can’t say otherwise.  It generally has been accurate on what my blood glucose was twenty minutes ago.  These dogs on Saturday are twenty minutes ahead of me.  They know what’s going on before any gadget I carry with me.

How amazing.

If you are a pumper and have ever been in a space with other pumpers, you know how you react when you hear someone else’s pump beeping or alarming.  I often forget and have a few incidents of surprise false alarms before I remember what it is like when we’re all doing our own thing. 

Afterwards, it makes me feel kind of alone, that having been with so many others like me was such a surprise.  It’s a little sad when I realize how infrequently I get to experience that similarity in my life.

After the ceremony I was chatting with a few people and three dogs near us were alerting a low to their companion.  Everyone started looking around and asking who it was; the dogs can sense someone’s low within 50 feet!  The man who was low was happy to announce it was him, and all the dogs got a treat.

The dog in front of me during the ceremony alerted her companion, a girl maybe 13 or 14 years old.  When the girl saw her dog alert her, she immediately checked her blood glucose, gave her dog a treat, and ate some sugar.  I guess that’s what she does now; she catches her lows before she goes low because her dog is there to help her catch them.

How cool is that?!