Tuesday, September 1, 2015

On A Break . . .

In my eyes, Diabetes Social Media (and Social Media in general) is similar to a romantic relationship.  At the start, when it’s shiny and new, I’m completely enamored.  It makes me smile, it’s always on my mind, and when other life things need attention I can’t wait to finish them up so I can get back to my new love.  I’m happily infatuated and everything seems so perfect . . . .

But then the newness starts to wear off, and maybe things start looking a little less perfect.  Flaws start to pop up and reality sets in.  The very things that once seemed so great can start to become a bit annoying.  Conflicts pop up and the shiny begins to dull.  I feel the need for a break . . .

And that is exactly what happened this summer.  I began to grow a bit tired of Diabetes Social Media, finding flaws that maybe aren’t there and finding myself not quite as smitten as I used to be.  And I unofficially took a break.

DOCburnoutDay-640x461So Diabetes Social Media Burnout Blog Day could not have come at a better time!  Thank you, Diabetes Daily, for coming up with this and really getting me to ponder my Diabetes Social Media relationship.  I’ve been thinking a lot about the little white print in the image to the right.  “Do you take breaks?  Have you been the target of an attack?  Felt bullied?  Exhausted?  Unappreciated?  How do you heal, endure, recharge, or reconnect to find your own happy balance within this powerful and tremendous community?  Shear your tips on your blog, and in the comments section on DiabetesDaily.com’s burnout blog on September 1, 2015.  #DOCburnout2015

My summer DSocMed break has been really nice.  I’ve had some time to think about what bothers me and what I love and how to balance all of that.  But the break has also been lonely.  I’ve kept up with some DOC friends but it hasn’t been the same as when I’m blogging and tweeting and reading and commenting.  I feel very out of the loop and I feel like I’ve been a bad friend and supporter.  So I am, hopefully, back from my little DOC break and I’d like to think I’m  a little wiser.  I’ve figured out the following:
  • Personal stories and support is the most important part for me.  This is what first drew me into the DOC.  The connections, the me-too, the knowing I’m not alone and that we all struggle together.  When I’m too overwhelmed to read the hundreds of posts in my feed, the personal stories of bloggers who need support is where I should spend my time.
  • Not every advocacy issues will speak to my heart.  And I need to understand that is okay.  Over the years, advocacy has gone from nearly non-existent in the DOC to a hot topic.  That is a great thing.  But I also find it exhausting at times.  “You need to do this.”  “You should care about that.”  “Why isn’t the DOC doing such and such?”  I feel a mix of guilt, resentment and, ironically, an urge toward inaction.  (I suppose I don’t like to feel bossed around.)  So I’ve decided that the great thing about the DOC being a vast pool of members with many varied issues is that I can put my energy into the ones that speak to my heart and that I’m good at.  I love my volunteer efforts with JDRF Advocacy.  I love providing support as the moderator of DiabetesSisters Virtual PODSSpare A Rose continues to be a must in my book.  When issues and initiatives speak to me, I will work hard to support them.  And when they don’t, that’s okay.
  • It’s all about that one person I reach.  I find myself bristling at terms such as “DOC superstars”.  Does anyone in the DOC feel like this term applies to them?  Does anyone believe they lead the DOC?  In my mind, that’s not what our community is about.  I see us as all equal.  Living our lives with diabetes, doing the best we can, and reaching out to help and to be helped.  It’s not the number of comments and RTs that matters.  It’s the one comment or tweet from someone who says “thank you for this, it helped me”.  I’ll never feel unappreciated if just one person has been reached.
  • Haters gonna hate.  (Do people even use that saying anymore?  Or does it just make me sound old?)  I have never felt bullied or been the target of an attack.  But I am quite sensitive and criticism that isn’t constructive hurts me deeply.  And the truth is, this year was the first Diabetes Blog Week that didn’t find me crying over something critical I stumbled upon.  But I realize I need to learn to let these things roll off me.  I know I can’t please everyone, even though I try really really really hard to do so during DBlog Week.  It’s terrible that I let the criticisms deeper into my heart than the compliments.  That’s totally on me, and it’s going to be something I work on from now on.  I’ll pay attention to constructive criticism, because that is very helpful.  The rest, I will learn to let go.
In the end, the break has done my DSocMed relationship some good.  I see that I am still in love, even if things are a little less shiny and perfect.  And a lot of the time, it isn’t you, it’s me.  But this is definitely a love that is built to last.

Tuesday, July 28, 2015

10 Insanely Good (and True) Things About Diabetes

So I hadn't realized that all 10 of my Insane (but True) Things About Diabetes focused on negative aspects until I read the great comment left by Sharon C
Can't tell you how many times I've nearly had to carry my kiddo out of Target. And at least once I put her in the cart (a tiny aged 12 chickie) and pushed her to the car. WTF?!! Sooo true. Don't get me started on IKEA. Glad you put out this post! Next post: 10 insanely good (but true) things that've come from having Diabetes. Can you do it? Are there 10?
Thank you, Sharon C, for really giving me something to think about.  After all, if the tagline of my blog is “life with diabetes isn’t all bad” I guess I’d better be prepared to back that up.  But are there 10?  That many might be tough, but I’m certainly not one to back down from a challenge.  So here we go!
  1. It’s taught me not to back down from a challenge.  What?  I just said that in my intro?  Well, I suppose it bears repeating.  Yes, diabetes can be really hard sometimes.  But giving up isn’t an option.  So we rise to the challenge time and again  and learn to never back down.  And that can carry over to other parts of our lives as well.
  2. Sometimes candy is medicine.  Low blood sugars generally are no fun.  But the bright side is that sometimes they give me an excuse to indulge in a yummy treat.  Jelly beans at Easter time.  Candy corn during Halloween.  Cotton candy at a fair.  I have to, my blood sugar is low.  (Also it can give me an excuse not to share my treats!!)
  3. Playing the D -Card / Sympathy.  Okay, I don’t do this a lot.  And it really isn’t anything to be proud of.  But every so often, I play the Diabetes Card.  I’ve been known to exaggerate low symptoms so my husband will do the dishes while I lay on the couch.  Hey, if I’m stuck with this chronic illness, I might as well reap a few benefits every once and a while.  (But please don’t tell Pete!!)
  4. That moment when I think my sugar is sky high, and I check it and I’m right in range.   This one is really hard to explain if you don’t have diabetes.  But if you do, maybe you know what I mean.  The feeling you get when you think your meter will throw you an icky high  number, and instead it throws you a really great one?  It is wonderful!
  5. Diabetes has helped me find a voice.   I was the shy girl in school who never raised my hand to answer questions.  I had a really hard time making friends.  I still often feel like that shy girl, but diabetes has helped me break out of my shell quite a bit.  I blog about the details of my diabetes life.  I speak up at diabetes conferences.  I go to D.C. every year to meet with our Representatives to lobby for government funding of diabetes research.  Not bad for a shy girl!
  6. Nailing the bolus for Chinese food. Or Mexican food.  Or any food that is tricky to bolus for.  When I indulge and my bolus works out perfectly, it’s a reason to celebrate!
  7. Diabetes makes me strong.  You know those 10 Insane Things?  Dealing with them gives me a strength I never would have found otherwise.
  8. Getting 100 on my meter.  Did you know that when you test your blood sugar and the number is a perfect 100, somebody has to give you $1.00?  It’s true, and you’d better believe I’ve collected $1 from my husband for each and every 100.  (Last night when I checked before bed, the meter flashed a 101.  Damn, so close but yet so far.  Oh, but we’re focusing on the good today . . . )
  9. Diabetes has taught me to be prepared and organized.  Am I OCD because it’s in my  nature?  Or is it because I need to have my shit together if I want to live?  After 35+ years with diabetes, I guess I’ll never know.  But I’ve always got stuff in my purse to treat lows.  I make notes on my calendar to remind me to refill prescriptions and change my sites.  I have spare rolls of test strips in my purse, in my meter case, in my dresser drawer and in a living room drawer.  I have backup syringes and long acting insulin and my pump settings have been uploaded to Carelink.  Well prepared and organized?  I am, because my life could literally depend on it.  (And this OCDedness spills over to life beyond diabetes too, and that generally helps my life run more smoothly.)
  10. The Diabetes Online Community!!  By far the very best thing about having diabetes is the friendships I have made because of it.  I’ve made some of the best friends of my life after finding the DOC and I don’t know what I’d do without the understanding and support I’ve found.  I know someone has always got my back, and I’ve got their backs too.  Most of my DOC friendships have carried over into real life, and have helped me make a bunch of fantastic local diabetes friends as well.  So without a doubt, the friendships I have forged through our shared condition is the very most Insanely Good (and True) Thing About Diabetes!!

Wednesday, July 15, 2015

10 Insane (but True) Things About Diabetes . . .

I’ll admit that my blogging mojo seems to be on Summer Vacation.  Try as I might, I can’t come up with anything to write about.  So in a moment of desperation (because OMG if I don’t blog about diabetes they might take it away from me)  (also, wouldn’t that be GREAT???) . . . anyway, in a moment of desperation I turned to Blog Topic Generators.  I didn’t really have high hopes that this would solve my problem but I typed in the word “diabetes” and hit the button.  To my surprise, a few fun ideas popped up!

Tango-Crazy-210 Insane (but True) Things” caught my eye right away.  Because really, diabetes is pretty insane, right?   So here are my 10.  Maybe you’ll find yourself nodding along.  Or maybe you’d like to add a few that I missed.  Or maybe you randomly stumbled across my blog, in which case I hope I’ve helped you learn some insane (but true) diabetes facts.

  1. The very medication that saves my life can very easily kill me.  -  What kind of sick joke is this, right?  Without a steady stream of insulin, I will die.  But dosing a bit too much insulin can also be lethal.
  2. Strangers (and  even people I know) seem to think it’s perfectly fine to tell me “diabetes horror stories”. - I really don’t understand what makes it okay to tell me about relatives with limbs chopped off or blindness or failed kidneys.  Sometimes I wonder if people do this for other illnesses too?  “Oh, colon cancer.  My grandmother had that and they removed part of her large intestine and she had to have a colostomy bag!”.  Please tell me people don’t say things like that - and please make them stop doing it about diabetes.
  3. When things go wrong, I get blamed. - The blame.  Oh the blame!!!  It sucks.  Blood sugars out of range?  Diabetes complications?  Must be because you aren’t taking care of yourself.  Again I have to ask if people do this with other illnesses?  “My uncle had skin cancer on his nose and they operated and it destroyed his salivary glands and for the rest of his life he couldn’t eat and was fed protein shakes through a feeding tube.  But, you know, he was a landscaper so he was in the sun all day long, so he really brought it on himself.”  Nobody would ever say that about skin cancer, right?  (Oh I sincerely hope not!!)  But it’s okay to tell a horror story with a side of blame about diabetes?  Come on, can we PLEASE stop doing this??
  4. Even though diabetes is an incurable chronic illness, people will tell me how to cure it. - Let’s hear it for the wonder cures!!  Cinnamon, okra, magic herbs, dancing naked under a full moon.  Once, while buying a JDRF sneaker at a pharmacy, the cashier proceeded to tell me that there is a cure for Type 1 in Europe and why I didn’t just go there?  I shutter to think what a statement like that does to the fundraising efforts . . . .  donate to Sneakers for the Cure?  No, just go to Europe!!
  5. I can be fine, and five minutes later I can be totally incoherent.  - Sometimes it’s scary how fast and severe a low can come on.  Toss in my hypoglycemic unawareness and the chance that I’ll randomly lose my ability to function at any point in the day increases.  Especially if I’m shopping at Target, am I right?
  6. The results often do not equal the effort. - I can do the exact same thing at the exact same time two days in a row, and go way high one day and way low the next.  Or I can have a day when I try really hard and still have crap blood sugars.  And I can totally half-ass diabetes management one day but find myself solidly in range.  Makes no sense!  It can also make motivation really hard to find sometimes.
  7. There is no finish line in diabetes and I can’t EVER have a day off.  - Yes, I know, this is what puts the “chronic” in “chronic illness”.  But think about it.  Since 1979, I’ve dealt with a condition that needs almost constant attention and is affected by a million different factors.  SINCE 1979!!!!  Not a single day off.  I did it yesterday.  I’ll do it today.  I’ll be doing it again tomorrow, and next week, and next year.  Frankly, if I think about this too much, it’s exhausting.
  8. Diabetes is hard on my body.  -  I have callouses on my fingertips from repeatedly lancing them to draw blood to check my glucose.  Every three days I jab the needle of an infusion set into my skin.  Every six days I do the same with my continuous glucose monitor.  For my first 28 years with diabetes, syringes were stabbed into me at least once a day and often almost a dozen times daily.  Bruises and scar tissue and red marks abound.  Medical devices must hang from even the most chic of outfits.  And let's not forget the toll diabetes takes on me internally, to my eyes and my heart and my nerves and every part of me.
  9. Diabetes is even harder on my mind. - The blame from Item 3?  It doesn’t just come from the outside world.  It also come from me.  When things go wrong I’m the first to blame myself.  Now let’s mix in some fear from Items 1 and 5.  Toss in some distorted body image from Item 8.  And let’s not forget some WTFedness from Items 6 and 7.  Mix it all together and it brings me to Item 10 . . . . which is . . . .
  10. Diabetes is just insanely hard.

Tuesday, June 30, 2015

Strangest Places . . . .

A week or two ago, I suddenly noticed my insulin pump clip was missing a chunk off the end.  I had no idea why or when it broke, but I wasn’t bothered.  I had a spare clip, so I replaced it and didn’t give it another thought.

Until today, when I was vacuuming under the couch cushions and a little clear nib of plastic caught my eye.


The bottom of my pump clip!!  How and why it broke off remains a mystery.  But I know one thing for sure.  I find diabetes stuff in the strangest places.

(PS: Don’t even get me started on test strips!!)

Wednesday, June 17, 2015

The Fear . . . .

fearDo you remember that bad low I wrote about last week?  Although it’s in the past, I find it has left me with an unexpected “side effect”.  Fear.

I’m not used to being afraid of going low.  Well, okay, I supposed I’m always a little bit afraid because lows can be serious and deserve a smidgen of healthy caution.  But for the most part I tend to worry more about highs than lows.  That has all changed.  I find myself getting panicky when my CGM low alarm rings.  I get scared when I feel the familiar fuzzy and shaky feeling.  Worse yet, my Fitbit stats tell me I’m averaging around 3,000 steps a day - no where near my 10,000 a day goal.  And I know my lack of steps is solely due to my fear of going low.

I think the reason this one is different from the rest is because it seemingly came out of nowhere.  In my 35+ years with diabetes there have been very few lows when I can’t remember what happened.  And they’ve occurred either in the middle of the night (when I likely slept through the low symptoms) or when I was already treating but it didn’t work fast enough.  This time was different.  This time, I was fine one minute and definitely not fine the next.

There is, of course, a silver lining.  I’m paying more attention.  I’m wearing my CGM continuously.  I’m testing more and not ignoring my Low Predicted alarms. That break I felt I needed is long gone. I even find I'm rarely swagging boluses, instead actually counting my carbs as precisely as I can in the hopes of avoiding a (now dreaded) over-bolus.

Sure, this sounds good - this reawakened attention to diabetes details.  And it is good, if it didn’t come with a huge dose of fear.  Because I don’t want to - I can’t - let myself live in the shadow of diabetes fear.  I’m hopeful the fear will just fade as that low moves farther and farther into my past.  But if you have any tips for overcoming it faster, I’d sure love to hear them.

Tuesday, June 16, 2015

Tethered . . .

Sometimes the slight hindrances of life with diabetes make me chuckle.  For example . . .

Don’t  you just hate it when you can’t get out of the car because you’re tethered to the seat belt?  And don’t you think this “problem” never crosses the mind of someone who doesn’t have diabetes?

Friday, June 12, 2015

Mojito Memories . . . .

So earlier in the week I was catching up on my DVRed episodes of The Chew because I still like that show.  (Although to be completely honest, I don’t like it as much as I did in its first few seasons.  Also, remember the time I went to a live taping??)  So anyway, I’m watching The Chew and who should appear on one of the on-location segments?  My favorite chef with Type 1, Sam Talbot.  Okay, I don’t actually know of any other chefs with Type 1, although I’m sure there must be a bunch more.  We’ll still call Chef Talbot my favorite though.  Especially because I like what he had to say towards the end of the segment about “diabetic food”.

It got me thinking back to the first year I went to Friends for Life and Tandem’s event for adults with Type 1, “A Night with Sam Talbot”.  It was covered towards the bottom of this write-up.  I remember how delicious that Blueberry and Mint Mojito was, although Pete and I shared one because I lost my drink ticket.  Actually, I thought I lost it.  The drink tickets were small(ish) removable tabs on the evening’s admission wristbands, and after we got back to the room at the end of the night it turned out my ticket has simply folded over and was hidden inside the band.  (Yes, I’m sure if I had told someone “in charge” they would’ve gotten  me another.  But we all know I’m far too shy for that.)  Ah well, maybe the universe was telling me I drink too much.  And look, even dead sober I very blurry pictures.

Who knows, maybe a full drink would’ve helped my uncoordinated self a bit!!  In any case, it was a nice walk down memory lane.

I’m not really sure what my point is in this rambly post except that I had a nice time reminiscing.  And perhaps I’ll make myself a mojito tonight with my “diabetic supper”.  *wink wink*

Wednesday, June 10, 2015

That Moment When . . .

JuiceThat moment when awareness flits in and out, as if carried by butterflies.  Deep inside I wish it would just crash in all at once.  I’m sure that would be easier.  I take another sip.  My water tastes so weird, almost fruity.  But I clearly remember our conversation as Pete poured our dinner drinks.  He offered iced tea, but I wanted water so that’s what he poured me.

Another sip.  No, I’m quite sure this isn’t water.  I suddenly notice my glass of water on the coffee table and realize I have a second glass in my hand.  “Wait.  What am I drinking?”  “It’s your Low Juice”, Pete replies.  That doesn’t make sense.  “Why?  Was I low?”

“Yes, baby.  I think it was a bad one.”

As we talk, a few more pieces of the puzzle come back, but never enough to fill in the whole picture.  My blood sugar must have dropped really fast, and Pete said he could tell I was low even before my CGM alarmed.  For one thing, I was just staring blankly at the T.V.  As he tells me this, I suddenly remember how confusing the show we were watching was.  That show?  It was Seinfeld.  Not a confusing show at all.  Then he tells me my hand was shaking so badly I could barely eat my cheeseburger.  Oh yes, I do remember trying to take bites while my whole arm jolted around.  I wonder why that didn’t seem odd to me at the time.

Pete asks if I remember my pump suspending.  I don’t, but sure enough when I look it has suspended.  I also don’t remember him getting me the juice.  I actually don’t remember much else about the time that passed during that low.  I imagine it’s like when you drink so much that you black out, without the fun, silly drunk time before the blackout but with the same hung-over feeling afterward.  (I’m guessing at this because I’ve never actually drank so much that I blacked out.)  There is only one other small memory that floats back to me, and I have the chuckle at the irony.  I remember thinking that it has been a very long time since I’d had a really bad low.  Maybe since that one I had while watching an early episode of Mad Men, when I got combative and yelled curse words and didn’t even realize what I was doing.  That’s right, as I sat there smugly thinking that I hadn’t had a bad low in a very long time, I was actually deep in the throes of a bad low and didn’t realize it.  Oh Diabetes, you sure love to eff with my mind, don’t you?

"You must be really sweaty, Sweetheart.”.  His words snap me back from my memories and I realize that yes, I am really sweaty and I’m shivering.  So I head upstairs for a shower, but not before apologizing for having such a bad low and scaring Pete.  In fact, I apologize over and over that night, and even for a few days more, even though I kind of know this wasn’t my fault.  I can’t help but feel sorry for putting him through that.

I also can’t help feeling the fear.  I’m not used the letting fear be one of the emotions tied to diabetes, but it’s wormed its way through and has settled in.  I let me mind go to the place where I wonder what would’ve happened if Pete hadn’t been home to help me.  If I had been driving.  If I had been with people who don’t know what a bad low looks like and what to do when it happens.  I don’t let my mind dwell on this too long, but right now I can’t completely block out the fear.