My Voice

I have a voice.  I have things to say and blogging has given me a platform where I can say them.  When I began blogging in February, 2011 it never occurred to me that I would become an advocate for living a good life with diabetes; that wasn’t my intent.  My intent was to have a place where I could write down my thoughts about my diabetes while practicing my writing skills.  (I gots skillz??)  Just maybe I would be able to improve some things about my life with diabetes…and it worked.  Blogging about what I’ve done or things that I’m contemplating makes them seem more real and it helps to keep me honest with myself.  If I put it here then, dammit, I should be doing it!  It’s working.

One side effect of being a blogger about diabetes is that I’ve found myself in the middle of the DOC (Diabetes Online Community).  The DOC is a lovely place full of unicorns, glitter and cupcakes as well as rants and fears and brutal honesty.  In a world that’s become increasingly “virtual”, the DOC is real.  It’s full of real people sharing with and supporting each other the best way they know how.

Does this mean that everything we read in the DOC is gospel?  Nope.  It may be gospel to someone but it doesn’t mean that it’s gospel to everyone.  That’s ok.  Who says that we all have to agree?  Who says that each of us will find success following the same path?  Well, some people may say that, but they’re wrong.  (You may say that’s my opinion, but it’s a fact.  Hey, it’s my blog!)

Over the course of this last year and a half I’ve wavered between being pumped up and excited about what I have to say and feeling as if maybe I’m full of hot air and should just shut up.  I never thought of myself as an advocate but here I am.  I am an advocate for people living with diabetes!  Advocacy: What does it mean?  Advocate: to speak or write in favor of; support or urge by argument; recommend publicly.  (Putting it in italics makes it seem much more important, don’t you think?)  

So why should people listen to me?  (Here’s where the wavering comes in.)  There are so many people out there who advocate for people with diabetes and sometimes if feels as if they are akin to rock stars.  They’re popular and esteemed.  They go to summits and workshops and it seems as if they’re in a club that I’d so like to be able to join.  So if they’re out there advocating and being heard by lots and lots of people, why should I even bother to put in my two cents?  Because the more voices we hear, the better off we will all be.  I don’t have to be a rock star in the DOC in order to make an important contribution.  What I have to do is be honest and put my ideas out there in the hopes that someone else will benefit.  That’s what I do.  I may not have a huge following; I may not get many comments but I do get an occasional word from someone who appreciates what I write or tells me that I’ve helped them in some way.  That makes putting myself “out there” worth it all.  Some may disagree with me or think that my ideas are useless but there are others who benefit.  That’s why many voices are important.  One size does not fit all.  I don’t spout gospel but I do hope that what I say makes sense to someone.

Perspective and Understanding

There have been lots of discussions online about which type of diabetes is worse.  You can find this in forums or blogs or FB discussions.  When I find myself thinking too much (which happens all too often, I’m afraid), I tend to minimize my own D in comparison to others. Things could be so much worse.  I personally feel that people with T1 have it harder than I do, and yet, I’ve had a T1 comment that they think it’s harder for those of us with T2.  Who knows?  In the end, it doesn’t matter because I’m of the opinion that the worst diabetes is the one we have.  No matter what type of D we are dealing with, it’s the worst because it’s affecting us.  We all need support and understanding.

I recently experienced something on a FB page that left me feeling awful and unsupported, by people with diabetes.  I posted about my concern about the spike I experienced after eating spaghetti squash, as I spoke about here.  I was really looking to see if someone had any suggestions on what could have caused the spike or if anyone else had had issues with this squash.  While a couple of people made an attempt to help it ended up that the majority of responses went something like this:  “I don’t know why you’re upset.  That isn’t such a big spike.” “Heck, if I ate that much I’d be looking at a 200 on my meter!” “I can’t even eat a slice of bread without spiking.”  The overwhelming theme was “You’re complaining about that?  Quit worrying.”  I nearly felt like I was being attacked for my concern.  Granted, my overly emotional state yesterday probably had a lot to do with my reaction to this, but even today, when I’m feeling more “stable”, I’m still upset about it and I’m not bound to go to that group for support in the future. That’s sad.

Here’s what I’m thinking today: Why is it the consensus that we shouldn’t be concerned about something to do with our D if it isn’t as bad as someone else’s issue?  Should support only be given to those in “bad shape”?  Why shouldn’t I be able to ask a legitimate question about my life with D even if my control is good?  I agree that we shouldn’t worry about one number.  I know that, but I was truly concerned about this situation because I want to know why a high fiber carb like spaghetti squash caused my glucose to rise higher than anticipated.  I’m here to tell you that I wouldn’t have the control I do now without constant vigilance and problem solving.  If I didn’t pay attention to trends then I’d be in pretty bad shape.  I know in my heart of hearts that my hard work and attention to detail has led to my success.  So what, should I stop paying attention now?  I don’t think so.

The point I’d like to make in this post is that it doesn’t matter what level of control someone has when dealing with diabetes; we all need support.  It doesn’t matter what type of diabetes someone has; one isn’t worse than the other.  Think about that the next time you give someone advice about their D.  Don’t minimize someone’s concerns.  It could be that they’re just learning or maybe they’re an “old timer”; if they’re concerned it’s for a reason and that concern should never be dismissed out of hand.

PS: to update on my spaghetti squash incident, I think it may have been the sauce more than the squash…and possibly the quantity.  I’m not giving up on this healthy alternative to pasta!!

“Don’t Get Cocky!”

 

 This is a line from one of my favorite Christmas cartoons, Opus 'n Bill in A Wish for Wings That Work (cbs, 1991).  If you haven’t watched it, you should. You can find it on YouTube. Bill is my hero.  (If you haven’t already figured it out, I have a very wacky sense of humor.)  For those more religious minded readers this post could be entitled “Pride goeth before a fall.”  Either one works because I’ve recently been taken down a peg or two by diabetes and it feels pretty crummy.

I posted about my success with lowering my carb intake and basically kicking D’s butt.  I’m proud of myself for my accomplishments but it left me feeling as if I had won, somehow; like I was in complete control.  Not.

Last night I ate a decent meal consisting of spaghetti squash, marinara sauce with turkey meatballs and green beans.  All of the carbs came from healthy vegetables with the exception of a wee bit in the sauce and meatballs (maybe 7 grams there).  Smug Kate thought, “HA!  Take that diabetes!”  The meal was yummy and satisfying; my PP glucose reading was not: 132 1.5 hours after my first bite. I’m not saying that 132 is a bad number, necessarily, but it is way higher than I’ve been seeing lately.  I was bummed.  This morning my fasting reading was 124 and it crept up to 134 before I had a chance to eat.  I was REALLY bummed.  I honestly wanted to go back to bed…but I didn’t.  I rode my recumbent bike for 30 minutes and my glucose dropped to a pleasant 107.  Yay!  I’m still bummed.  Why?

This morning I feel as if diabetes is still winning despite all my hard work.  The bugger just won’t go away!  I know, I know…it won’t “go away” but, because of my recent success I felt as if it had, in a way.  I haven’t been looking for that “magic pill” but I think, deep down, I was.  I feel as if my cockiness has caused me to feel inordinately sad today.  Yes, I did the right thing by exercising to lower my glucose but I still feel bummed. 

I won’t give up but I need to work on a more realistic outlook about the “long term-ness” of this disease.  We can win some battles, we can fight the good fight, but it’s important to remember that there WILL be days when we don’t win.  That’s ok.  It’s still worth the effort.