Support

When I was first diagnosed with diabetes, my mom tried really hard to get us involved with support groups.  I can remember going to group events with other T1 kids . . . .  and I hated it.  I was painfully shy and group situations were pure torture, regardless of the diabetes connection.

It’s funny how things have completely changed.  Now I get support from many different places - so when the #dsma blog carnival asks us to describe our ideal support group, I am lucky enough to say my ideal support group already exists!

The first place I turned for support as an adult was the diabetes online community, or DOC.  In many ways the DOC is the best support group around.  It’s filled with fun, caring people.  And because you can connect with others all over the world, there is always someone online at any time of the night or day that you need support.

I’m very lucky that so many of my online DOC friends have become true real-life friends, but because we are spread out all over the place I don’t get to see them as often as I would like.  And as great as online support is, there are times when you just need sit down with another person with diabetes for a good chat.  And that is where my Fairfield County Dinner Group comes in.  Our dinners are fun and always feel festive, and these ladies are always willing to lend an ear and give advice about all things diabetes.  The best thing?   We talk about so much more, and I love that our group shares a bond that goes far beyond our diabetes.  I really don't know what I'd do without Rachel, Kathleen and Erin!

And to round things out, I’m also involved with my local JDRF T1 Adult Outreach groups.  These gatherings tend to be larger and more diverse, because JDRF has the resources to let more people know about the meetings.  I also love that we do a mix of events - some casual hang-outs and some more structured and informational meetings.  It’s nice to have the variety.  And our planning dinners are just as much fun as our actual events - we are lucky Joan is so organized or we'd probably spend so  much time socializing we'd never get any actual planning done!

My ideal support group exists, cobbled together from three different sources of support!  Where do you turn for support?

This post is my April entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/

Wordless(ish) Wednesday - Grocery Shopping

Yes, that does say 39.  And yes, you can see the reflection of me taking the picture.  :)

I’m not sure why grocery shopping so often makes me low.  Hanging in the parking lot with a trunk full of perishables while waiting for the glucose tabs to kick in sure isn’t fun.  However, it did help me understand how the chocolate donuts and box of key lime cookies found their way into my cart next to the asparagus and oranges and Greek yogurt.

Striving for “Level” . . .

So I seem to have blown the Health Activist Writers Month Challenge.  It took me longer than I imagined to set up my new laptop and I also got occupied with some other stuff.  Oh well, that’s life.  I’ll just try again next April.

Anyway, now that Pete is back to work we are falling back into our old routine and it feels good to be on a set schedule again. There is one glitch, however.  And as usual, that glitch is diabetes.

While Pete was laid off my blood sugars got really out of whack.  I chalked it up to a combination of stress and our crazy . . .  or should I say lazy . . . . schedule.  I adjusted as best I could and tried not to worry too much.  I knew that once we were back to our old routine things would level off again.

Surprise, surprise . . . . things have not leveled off.  I can’t remember when I’ve seen so many high numbers flashing on my meter’s screen on a daily basis.  My CGM is constantly blaring either rise-rate or fall-rate alarms.  If I’m not too high, then I’m way too low.  The most frustrating thing is that I’ve really been trying hard.  Nothing works.  I’m carefully counting  my carbs.  I’m pre-bolusing to avoid meal spikes.  The other night I was dying for a snack, but  had made it through the day without going high.  So I chose my snack wisely and ate a bowl of sugar-free Jell-O.  You can imagine how pissed off I was to find my blood sugar in the 200s a few hours later.  I started to feel like it wasn’t even worth trying.  I feel like I’ll never level off.

But, with diabetes, not trying is not an option.  So I continue to choose Jell-O over the remaining Easter jelly beans.  I’ve been looking at patterns and making some basal tweaks.  I still can’t get a handle on this new morning spike that’s been happening, but before breakfast today I gave my bolus twice as long to start working before I ate.  It didn’t work . . . . I still ended up way too high post-breakfast and needed a correction bolus.  So maybe it’s time for some old school basal testing and then a look at my breakfast insulin-to-carb ratio.

I’m sure not thrilled.  I still don’t understand why nothing seems to work anymore.  I’m definitely feeling major frustration moving in.  But I know I’ve still got to try . . .  right?  What keeps you going when nothing seems to work?

Pass!!

I'm using my second (and final) "Get Out of Post Free" card today.  My new laptop should be here tomorrow, which will make finishing out the month much easier.  Also, I'm preparing to speak about Social Media at our local JDRF T1 Adult Outreach group tonight!!  Cue the nerves!

Resisting Pinterest . . .

Pinboard. Create a Pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.

I know Pinterest is the new web craze . . . . . but I (gasp) don’t have an account.  To be honest, I’m resisting because I feel like I’ve got enough on my plate with two blogs, Facebook, Twitter and the hundreds of blog feeds in my Google Reader.  And since Friday, I can barely get my computer to progress from this::


Yup, d-e-a-d dead with a capital D.  Dead!!!  Luckily, I had most of my stuff backed up since I knew my computer has been sorely in need of some glucose tablets for a while.  You know, humming along and then suddenly stops functioning, just like a low blood sugar.  Then again, at times it seems like it’s got a high blood sugar - sluggish and cranky.  In any case, I was able to run it briefly in Safe Mode (which I guess is like when your CGM is giving spot on readings) and I was able to get some more files that  I needed.  But I remembered a couple more I need to copy off, but my poor laptop just keeps crashing now.  I wish I had the computer equivalent of glucagon to help resurrect it!

Ah well, although I’m stuck with a faulty pancreas for life, at least a computer is replaceable.  My new laptop should be delivered any day now.  And if I was on Pinterest, maybe I’d pin that to my board!!

Happy Birthday, Mom!!

I’m not using today’s prompt about writing style because instead I want to wish a Happy Birthday to my mother!!

Mom on her birthday, with her sister and one of her brothers.

I love this picture, because it captures their personalities perfectly!!

Happy Birthday, Mom!!  Love you!

Dream Day . . .

My Dream Day. Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

**** The events that follow are based loosely on my actual plans for today.  Here’s hoping it plays out exactly like this!! ****

Today is my perfect day . . . .  and here’s how it goes.  I wake up at a decent hour feeling rested and refreshed.  As usual, the first thing I do is start the coffee brewing and then feed the kitten.  And next I change my lancet and check my blood sugar - which is 82!  I bolus a unit for my coffee and take a sip of the strong, fresh goodness in my mug vat as I get my poor sick laptop out.  Crossing my fingers, I hit the power button, and once again Startup Repair begins to run.  But unlike yesterday, it actually repairs the problem and soon my laptop is up and running again!  Yay!!

Pete stumbles out of bed and, to my surprise, he remembers that today is my 4-year pumpiversary!  He kicks off the celebration by cooking up an omelet with a side of grits for each of us.  I do a pre-breakfast blood sugar check - I’m up to 122 but my coffee bolus is still working so I just need a bolus to cover the 32 grams of carbs in my grits,  I actually drop a unit from my bolus, because after we eat I hop on the treadmill to get a little #sweatbetes done while Pete’s in the shower.  Then while I shower, he runs to the bank and then takes the license plate off our old car.  At noon my dad picks us up to drive us to the car dealership to pick up Pete’s  new car!  At his old job he was able to commute by train, but that doesn’t work for his new job so we are a two-car family now. At the dealership my CGM sings out a “Low Predicted” alarm, and a finger stick confirms I’m in the 70s, so I enjoy a few Starbursts while we finish up our business.

Of course, a new car calls for an immediate road-trip, and the dealership just happens to be half-way to the casino!  So off we go to celebrate his new car, his new job and my four years on an insulin pump!  My blood sugar is still hovering slightly above my low-threshold, so I happily say “Yes!” when Pete suggests lunch at the yummy Mexican restaurant.  Nothing like some good Mexican food to give a boost to my blood sugar (usually when I don’t need it boosted - so I’m glad my treadmill time  helped make my lunch easier to handle).  After eating, it’s time to hit our favorite slot machines.  And what do you know, my gambling luck is going just as well as my blood sugar luck!   It’s like I just can’t lose today - which is a good thing because I’m pretty sure I’ll be needing a new laptop in the near future.

On the way home we stop off at Whole Foods for some nice cheese and some fruit and a fresh loaf of bread, which we nibble on for dinner along with a chilled glass of wine.  Later as I head to bed, I realize I’ve had my first No Hitter - although I had some predictive alarms, I fended off any lows and highs before they happened!  It’s the cream cheese icing on my red velvet cake of a day!

What would your dream day be like?

Things I Can’t Live Without . . .

10 Things I Couldn’t Live Without. Write a list of the 10 things you need (or love) most.


My first five on the list are ”honest-to-goodness, I would really die without these” things . . .

1. Blood glucose meter
2. Test strips
3. Insulin
4. Insulin pump (or syringes)
5. Glucagon (or fast acting carbs in non-emergency situations)

And my second five are “OMG, I like so totally can’t live without these” things (or the things that make life worth living) . . .

6. Pete
7. K.C.
8. Coffee
9. Good milk chocolate
10. The D-OC

What can’t you live without?

Smiling . . . .

Stream of Consciousness Day. Start with the sentence “This morning I looked in the mirror...” just write, don’t stop, don’t edit. Post!


This morning I looked in the mirror . . . . . . and I smiled.  Not because of what I saw . . . .. but because I feel really happy.  I feel like things are finally turning around.  Today is Pete’s fourth day at his new job.  He really likes it, and it takes some huge worries off of us.  I’m so proud of him for working very hard to find a new job so quickly.

To be honest, when he first got laid off I thought it might be nice to have him home with me for a while.  I wouldn’t feel stuck home alone with just the cat to talk to, because he’d now be here all the time.  And it was nice to have him around . . . . but on the other hand, he was HERE ALL THE TIME.  I love that boy, but being home together 24 / 7 wasn’t quite what I thought it would be.  After the first month or so, we started to get on each other’s nerves quite a bit and I started to miss some of my solitude.

In the end, it just feels good to be back into a routine, because for the past 2 1/2 months we really didn’t have one.  We stayed up way too late.  We slept in way too late.  We ate breakfast sometime around lunch-time.  We barely ate lunch.  Dinner was late.  And my diabetes management suffered for it.   My weight loss plans went off track and my exercising became non-existent.  It was just really hard to be productive and get things done when every day felt like a weekend day.

All in all, Pete’s lay off wasn’t that bad.  We’ve been through far worse than that.  But I sure am happy to get back to a “normal” life.  And knowing that we have income and insurance sure does make me smile.

My Diabetes Playlist . . .

Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

I was pretty sure I was going to skip this topic today, because I just can’t come up with a theme song for my blog.  But I decided to just take the topic in a different direction.  Instead of a theme song, I want to share two of my favorite diabetes songs by two very special people.

The first is the song that my friend George, the Ninjabetic, wrote in 2008 for World Diabetes Day.  Every time iTunes shuffles to Not By Choice when I’m in the car, it makes me smile and cry at the same time.  I’m so proud of George for writing this wonderful anthem.

For the second song on my d-playlist, George teamed up with the fantastic Cherise to parody a Beyoncé song.  Pete and I have been known to randomly break out into a chorus of All the Diabetics when we are at home.  (Okay, and sometimes in public too.)

What songs are on your Diabetes Playlist?

Dear 16-year-old-me . . .

Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

Dear 16-Year-Old-Me,

You probably think you know everything and you will just want to ignore this letter.  Please don’t.  Please let me help you as much as I can.

Diabetes is hard.  Things will change, treatment options will advance . . . . but I’m going to be completely honest with you when I say diabetes will still be hard.  But what you are doing right now is just making it even harder than it has to be.

First, I want to tell you to TAKE CARE OF YOURSELF!!!!  I know you think that complications are unavoidable and that you  are half way through your life-span right now.  I know you think you shouldn’t even bother to try.  You are wrong.  I know for a fact that you will still be complication free by the age of 43.  Yes, you’ll have a few scares along the way, but you will be just fine.

In  a couple of years you will lose your beloved aunt to diabetes complications.  You’ve been watching her suffer for years.  You think this is a look into what the future holds for you.  It isn’t.  You can live a better diabetes life than she did, because you are lucky enough to have more treatments available to you.  It’s okay to remember her - but don’t remember her as a look at where you are headed.  Instead think about how proud she is to see you living a healthy life.

And here’s another thing you need to know.  LET PEOPLE IN!!!  You can, and should, trust your friends and stop hiding diabetes from them.  There will come a day when diabetes plays a huge part in your life and you will know more people with diabetes (or PWDs) then without.  You will want to talk about diabetes to anyone who will listen.  Crazy, right?  It’s going to be the best thing that ever happens to you.  It’s going to make you feel strong and empowered.  It’s going to help you manage your diabetes well.  It’s going to show you that you aren’t broken, you aren’t weak, and you aren’t the human equivalent of a factory-second.  Let people in.  Let people really know you.  Let people help you when you aren’t feeling so strong.  And you will be inspired to fight for them just as hard as they fight for you.

16-year-old-me, I know you can’t see it now, but believe me when I tell you one day you will understand that life with diabetes isn’t all bad.

Love,
  43-year-old-me

PS:  I have a message from your future husband.  He says “Remember when your grandmother used to say “Don’t sing at the dinner table, or you’ll get a crazy husband”?  You should have listened to her.”.  (He’s right about the crazy husband part, but I’m so glad you didn’t listen to Grammy!  Your future husband is very awesome - so if you won’t stay healthy and fight for yourself, do it for him.)

Keep Calm . . .

Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? Then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.

I really love today's prompt, because I just don’t find it easy to keep calm when diabetes isn’t playing fair and my blood sugar is out of whack.  So I created two Keep Calm posters.  The first one is for when my blood sugar is way too low and I’m feeling like I should eat everything I can get my hands on.

My reminder that 15 grams of carbohydrates is usually enough to banish a low blood sugar.

The second one is for when a stubborn high blood sugar is working my last nerve.

My reminder to relax and give my insulin time to work, rather than continuing to take more and more and more!!

What will you Keep Calm and do?

Fill up that pump reservoir . . . .

Today's prompt is: Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week. But I'm doing my own thing today . . . .


Time to crack open a new bottle of insulin and fill up that pump reservoir, because the Easter Bunny has made a visit!!

But seriously, count, dose and everything in moderation!  Happy Easter!

Sometimes it’s the little things . . .

Health Activist Choice! Write about what you want today.

When I started pumping, my Medtronic rep recommended trying the Quick-Set infusion set since it’s their most popular one.  They’ve always worked well for me and I’m still using them today.



One of the things that appealed to me from the start was the Quick-Serter, a device to help easily insert my infusion sets.  Sure, I had been doing injections for a long time, but for me, inserting a site was a very differently thing and the Quick-Serter helped make it relatively painless and  . . . well . . . quick!!  Some time later I saw a post or tweet or something from another pumper who was changing the type of set she used and she was looking to pass along her unneeded Quick-Serter.  I gratefully accepted, happy to have a spare.

Then one day I saw a post (I wish I could remember who wrote it) by a blogger who inserted his or her Quick-Sets manually.  No inserter??  The thought had never crossed my mind.  But I decided it might not be a bad idea to try it, because you just never know.  What if I didn’t have my Quick-Serter handy but needed to change my site?  So I hemmed and hawed . . . . I screwed up my courage . . . . and thwack I slapped my site on manually.  And it wasn’t so bad.  It was a bit awkward, but it really didn’t hurt any more than usual.  Satisfied that I had done it, I promptly went back to using my Quick-Serter.

For whatever reason, a few weeks ago I decided to do a manual insertion again.  And again.  And again.  My Quick-Serter has stayed nestled in my d-supply drawer.  I’ve found I really like inserting my sites manually.  It’s not that it’s easier.  It’s not that it hurts less.  It’s not that doing it either way is better or worse.  But manual insertion feels like a bit of a rebellion for me - Ms. Play-By-The-Rules Straight-And-Narrow Nerd-Girl.  It may be a little thing, but in some way it feels like a win!!  And any time you can score a win against diabetes it’s a good thing!!

Have you had any little Diabetes Wins lately??

** My Medtronic disclosure can be found here. **

Haikuabetes

Health haiku. Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like.

My haiku literally just flowed out in less than a minute.  Admittedly, it’s somewhat dark, but it is honest and real and it ends on a high note.

Wow, thirty-two years.
I thought I’d be dead by now.
Never stop striving.

Diabetes Catvocate

Ekphrasis Post. Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image!

When I navigated to the Flickr link I saw this picture:

Photo Credit: Vocal Exercises by BUN BUKU, on Flickr

Perfect - a cat.  It’s no secret that I own the cutest cat in the world (even if I am slightly biased).  I immediate thought my recent twitter conversation with Kewl Innovations in which we joked about the cool new buzzword diabetes #catvocate.  A smile immediately came to my face and I felt instantly lighter and happier.

Could I delve more deeply into this image?  Sure I could.  Could I come up with ways this picture represents serous diabetes issues?  Probably.  But today, I’m not going to do that.  Today, I’m going to stop with my silly little #catvocate joke.  It’s no secret that we have lots of silliness in the Diabetes Online Community, with jokes of unicorns and sprinkles and cupcakes (not sure that link will work, but if it does, it's awesome) and bacon and #duckfiabetes.  Diabetes is a tough disease that really doesn’t ever give us a break.  And I think some silly humor is the perfect way to cope with that!

Why write about diabetes?

I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.

I’m feeling quite under the weather today (thank you Pete, for sharing the bad cold you caught while I was away last week).  And this topic is not an easy one for me to try to explain.  Basically, I write about diabetes because I feel driven to - and here is a rambly 15 minutes to try to explain why . . .

Back when I first found the DOC, I was a knit-blogger.  The second I found people out there living with diabetes, just like me, and BLOGGING about it too, I knew I wanted to be a part of it all.  I wanted to leave comments and connect, but I thought linking my knitting blog in the comments would be weird.  So to avoid having people think “Who is this crazy knitting girl who leaves comments on diabetes blogs?”, I decided to start Bitter-Sweet.  Of course, now that I know the DOC, I know people would have been happy to connect, no matter what my blog was - or even if I had no blog at all.  But in the long run, I'm grateful for the motivation to start blogging about diabetes.

Once I started sharing my diabetes life, I found I had a lot to say.  I started to meet other diabetes bloggers in person, and I started to build some very important friendships.




I started out looking to connect with people who understood how living with diabetes felt.  I never imagined the connections would turn into such strong friendships - the kind where you can spend well over two hours on the phone with someone and still have a ton left to say.  This is still the main reason I blog, this is the root of my passion.   However, writing about diabetes has evolved to more than that for me.  I want to help, I want to advocate for the changes we need, I want to make a difference.  I am just one little voice, but I’ve seen our community band our “little voices” together to send loud, clear messages.  It’s exciting to advocate for something I believe deeply in, and it is a path I never imagined my blog would lead me to.

Superpowers . . . Activate!!

Superpower Day. If you had a superpower – what would it be? How would you use it?

Wait . . . . what?  What do you mean IF I had a superpower?  Come on now, I DO have a superpower.  I am Pancreas Girl!!!
I stand in for a human organ 24 hours a day, seven days a week - and I’ve been doing it for over 32 years (with some help from my superhero parents when I was younger).  I’m able to leap high blood sugars in a single bound - with a correction bolus or two.   I fight the evils of low blood sugars that are trying to knock me out - with my trusty juice box by my side.  My super-girl gadget belt holds my pump, meter, insulin, snacks, and spare pump and CGM supplies - it gets pretty heavy but I don’t let it stop me from soaring to great heights.  My arch enemies are The Diabetes Police - those nasty villains who try to bring me down by assaulting me with horror stories about what happened to their relatives with diabetes while they judge each bite I put in my mouth.  And my kryptonite, of course, is my blasted immune system that chose to kill off my poor little islet cells.

Yup, I am a SuperHero - even on those days when the load is heavy and I don't feel super at all!!  If you live with diabetes or another chronic illness, or any major health concern for that matter, you are a SuperHero too!  Fly high and fight the good fight, my super-friends.

Just keep trying . . .

Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

So I’m just back from the second Medtronic Diabetes Activist Forum.  They planned an incredible schedule of events which I’ll be sharing  my thoughts on bit by bit, and I’m going to start with the guest speaker who presented during the afternoon.

Leighann and I getting our books signed.  Photo "borrowed" from Cherise.  ;)

Chuck Eichten, PWD since 1977 and author of The Book Of Better, met with us to share some thoughts and insights on living with diabetes.  One of the quotes he mentioned really resonated with me, and I quickly noted it down for today’s post:

“I can accept failing.  I can’t accept not trying” - Michael Jordan

For me, this is really what life with diabetes is all about.  No matter how hard I try, no matter what I do, there will be times . . . many many times . . . . when I will “fail”.  Hard as I may try, I’m going to end up too low sometimes - like when we went to In-N-Out Burger on Saturday and I dosed for an accurate carb count and ate everything I bolused for . . . . and still ended up low most of the afternoon.  Or when I recognized that I always run high when I travel by air and started a 145% temp basal on the way to the airport yesterday morning, but still ended up with a CGM that looked like this as I boarded the plane . . .



It’s the times like these when I am the hardest on myself, blaming myself for these so-called failures and judging myself so harshly.  And it’s the times like these when I just want to throw in the towel, because if I can’t do anything right why even try.  From now on, I’m going to look back to Michael Jordan’s quote when I’m at my most frustrated and nearing my breaking point.  Because “failing” is just fine - in fact, when you are trying to be a human organ, failing is pretty inevitable. But not trying?  Nope. that is not an option.

** Medtronic invited me to the Diabetes Advocates Forum, and paid for my flights to and from L.A. and for my meals and lodging during the Forum.  They did not ask me to post about the Forum, and all observations and opinions are my own.

Ooops!!!

So today is Day 1 of the Health Activist Writer’s Month Challenge from Wego Health.  The fact that I don’t have a post and am using one of my two “Get Out of Post Free” cards does not bode well for me.  However, I have spent the day traveling back from Los Angeles after a fantastic few days with some marvelous DOC members for the second Medtronic Diabetes Activist Forum.  More about that, along with my attempt to post every day for the rest of April, after I get caught up on some much needed sleep!!