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?!

There is a funky power play in a doctor’s office, if you ask me.  The visit is about YOU and you are paying your doctor, yet there is always an element of fear for me.  Maybe a fear of being judged or a fear of being found out (how many times just yesterday was I above 200?) and we won’t even START with the required weigh-in each time I’m there.  So even though I’m the ever-important subject of the visit, and everyone else would be worthless without my presence, they still hold all the cards.

So really, it’s just odd and for me, rather unpleasant.

And then there’s the privacy element that turns our sense of normalcy on its head.  Get there, sit and wait.  Someone you’ve never seen before opens a door, mispronounces your name and you holler out and hop up “That’s me!” and then you follow that person back into a winding maze of hallways until you reach the weigh-in station or until you’re shut inside a new room.

If it’s an endocrinology office, you get to sit and stare at a poster of the endocrine system, or a poster of an endocrine related disorder.  (My favorite poster from a few doctors’ back had this one of hyperthyroidism; that poor person had the saddest expression and the biggest eyes!  But I digress.)

So you are left alone in a room.  For whoever knows how long.  And that room has all kinds of cupboards and drawers and papers.  (I’m a big—huge—believer in opening those drawers after a certain amount of time.  I can restrain myself for a good 45 minutes, but beyond that, I think they are fair game.)

But what is never EVER in that room?  Your medical chart.

That is what to me is the most interesting part—what someone has said about ME.  Never have I claimed to have a small ego, and the entire point of the visit is for ME to share things about ME with someone else, who in turns writes down either what I’ve said, or what their interpretation is of what I’ve reported.

Yet they never let me see what they’ve written. 

Working for doctors for twelve years and working with medical charts for just as long, I know for a fact that very very few of them are at all interesting.  Yet that knowledge doesn’t really help.  I want to see it!!

Yet I’m not willing to request a copy; I know it isn’t that interesting. 

But I still wonder.

I have been thinking about what age we all were when we were diagnosed and how that age affected how we deal with our disease.

I think there is a huge difference between the types of diabetes, and one of the reasons I think they are so different involves how old we were when we were diagnosed.  I know many type 2s and type 1.5s see type 1 as just a different variation on their same disease yet I know very few type 1s who think their disease is the same as type 2 or type 1.5. 

I can’t figure it all out, but I think one of the reasons we see the diseases differently involves who we were when we were diagnosed.

I’m not talking about whether we call type one juvenile onset and type two adult onset: I’m talking about how much of the world we knew before our diagnosis.

I guess it’s the same type of idea as a parental divorce: it can be devastating to a child at any age, but sometimes a younger child doesn’t always have quite the division of “before” and “after” as a teen or even adult child does.

Many of those diagnosed with type 1 in teenhood or adulthood marvel at the work that goes into diabetes.  For me, being diagnosed at 10, the work load didn’t make a huge impression on me—I was still learning about the world outside of my grade school; I simply had no comprehension of what “insulin dependent diabetes” was going to mean to me.  The amount of work that diabetes actually takes has been secondary for me—it’s just a part of my life at this stage, and I tend not to see it as something no one else has to deal with.

I know several who were diagnosed later in high school and even college who were able to see the diagnosis as a huge thing that divided them from their friends—and who have struggled with accepting their disease as a result.  Denial was certainly something I carried around with me for years and years, but I didn’t have the thought that “everything was fine before my diagnosis”. 

I think people who are diagnosed later in their lives (in their 30s and beyond) just have a whole different set of expectations of themselves, a whole pile of misunderstandings of the disease, and a whole different set of fears accompanying the knowledge that Everything Is Different Now.

Again, this is just one of the things I’m thinking about these days.  Let me know if you have an opinion on this one, or if you had a different experience when you were diagnosed.