Tuesday, May 16, 2017

The Cost of a Chronic Illness - #DBlogWeek Day 2

It’s the second day of  Diabetes Blog Week and we’re off to a great start so far with 105 bloggers signed up.  Please take a look at the Participant’s List and make sure I’ve listed your information correctly.  I double checked every entry but I’m far from perfect so if I’ve made an error please email me and I will fix it right away.  If you’re blogging along with us but haven’t signed up, please do take a quick minute to do so over here.  It helps me keep tabs on how many bloggers are still interested in DBlogWeek and also helps other bloggers find you.

200x200Today’s topic is The Cost of a Chronic Illness. Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care? (This topic was inspired by suggestions from Rick and Jen.)

The financial cost of life with diabetes has been a very hot topic lately.  Here in the U.S., costs are rising and the political climate has a lot of us feeling fearful about the future.  I don’t know what will happen and I’m honestly scared.  But on the same token, I know I’ve been very lucky.  I’ve never had to go without my medications.  I’ve always had good insurance.  Things certainly aren’t cheap, but we’ve never had to choose between paying bills or buying food or purchasing diabetes supplies.  I know how lucky and privileged I’ve been so far.

priceiswrong-2400pxSo when I think about the cost of my chronic illness, it isn’t always the dollars I’m thinking of.  Instead, it’s less tangible things.  Diabetes costs me countless hours of sleep treating middle of the night lows or correcting stubborn overnight highs.  I’ve paid with so many tears of frustration when I’ve tried my hardest and things still don’t go well.  It costs me guilt when I see the worry in my husband’s eye or hear the panic in his voice when he’s leaving me a second voicemail and I haven’t answered the phone.  Diabetes charges a lot in energy and brain power just to  keep myself alive.  It has repossessed my nights when plans are cancelled because out of range blood sugars have left me too exhausted to go out.

I know there will be many powerful posts shared today and in the future about the huge financial cost of diabetes.   But life with a chronic illness costs so much more than dollars and cents.

Diabetes Blog Week
You can find more Cost of  a Chronic Illness posts listed here.

What is Diabetes Blog Week? Click here for an explanation and to sign up. You can also check out the Participant’s List here. And don't forget to check out the DBlogWeek Facebook page here.

Monday, May 15, 2017

Diabetes and The Unexpected - #DBlogWeek Day 1

Welcome to day one of Diabetes Blog Week, Year Eight!!  If you’d like to participate but haven’t signed up yet, please do so here (scroll down a bit to find the form).  The more the merrier and it’s definitely not too late.

200x200Today’s topic is Diabetes and The Unexpected.  Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

You know the old saying “Don’t sweat the small stuff”?  Well, I have yet to follow that advice.  I sweat the small stuff.  I also sweat the big stuff.  I pretty much sweat all the stuff.  It’s annoying.

The upside to this is that I’m generally over prepared for just about any situation.  When it comes to diabetes, more often than not I have everything I need.  My purse has candy, glucagon, everything needed for a pump site change, extra tape, batteries and syringes.  A reminder on my phone assures I don’t forget a site change.  When I travel, I bring at least three times the diabetes stuff I need.  That’s not to say I’m perfect.  There have been a few times when I’ve slipped up a bit, but usually I’m more than prepared for the unexpected.

And the most unexpected thing about being way way way prepared is that I’ve been able to help out others.  I’d say the majority of my travel is for diabetes conferences.  Having a ton of supplies means I can help out others who’ve forgotten something.  Ran out of strips at Friends for Life?  I had an extra vial to give.  Needed tape for your sensor at UnCon?  Look no further than me.  Forgot to pack your infusion set inserter or ripped out your site and didn’t have a spare?  I had your back.  And my favorite unexpected was a pump that died at the DiabetesMine Summit.  I had packed my old pump and was able to loan it out until a replacement pump was sent.  (Although given the option, I'd definitely wish my friend's pump hadn't malfunctioned......)

pumps

I try my best to be prepared for any diabetes unexpected situation that pops up.  But I never expected how good it would make me feel to know I can also help out a friend in need from time to time.

Diabetes Blog Week
You can find more Diabetes and The Unexpected posts listed here.

What is Diabetes Blog Week? Click here for an explanation and to sign up.  You can also check out the Participant’s List here.  And don't forget to check out the DBlogWeek Facebook page here.

Tuesday, May 9, 2017

Eighth Annual Diabetes Blog Week!

When I first started Diabetes Blog Week way back in 2010 I wasn’t sure if anyone would sign up.  I was so excited to see how many of you wanted to participate.  And each year I become more and more grateful that so many d-bloggers continue to show such support and enthusiasm for this event.  I’m also thankful for all of the help you’ve given, with topics for us to write about and suggestions to help things run more smoothly.  Diabetes Blog Week has continued to evolve and grow in a way I couldn’t have ever imagined.  And so I’m beyond excited to kick off the Eighth Annual Diabetes Blog Week.  Here we go!



What inspired Diabetes Blog Week?  For those of you who haven’t participated before, Diabetes Blog Week was originally inspired by a fiber-blogger event called Knitting and Crochet Blog Week.  When I participated that first year on my knitting blog I loved the way it united the community, and I knew I wanted to try to do the same for the DOC.

How does Diabetes Blog Week work?  The main idea for Diabetes Blog Week is that bloggers sign up to post about a set topic each day for a week.  This way, readers can jump around the DBlog Community and get a big variety of different perspectives on a single topic.  The hope is that new DOC connections are made, and that our voices are raised to spread a little more diabetes awareness.

When is Diabetes Blog Week?  The eighth annual Diabetes Blog Week will take place next week, from May 15th through May 19th.

Where can I find the Diabetes Blog Week topics?  You can find the topics for next week on the Topics and Posts page.  They’ve been posted in advance, just in case you want to start drafting your posts this week.  (But please remember not to publish your post until that specific day!). Use the topics as a starting point for your post each day and see where it takes you.  Write as much or as little as you like.  There are no right or wrong answers - just read over the topic and start blogging!  I've also included a wild card topic.  If one day’s topic doesn’t inspire you, feel free to post about the wild card topic instead.

Who can participate in Diabetes Blog Week?  DBlog Week is open to anyone who blogs about diabetes - be it Type 1, Type 2, LADA, gestational, etc., and it’s also for parents, spouses, loved ones and caregivers to someone else with diabetes.  If you blog about diabetes in any capacity, please join us!  The more perspectives that are shared the more connections we can make and understanding we can foster.  If you don’t have a blog but have thought about starting one, now is the perfect time.  There are free blogging sites (such as Blogger or WordPress) that you can use to get started.

Can blogs done by groups, organizations and companies join?  I like to make Diabetes Blog Week as inclusive as possible, so yes, group blogs and professional blogs are welcome to join.  However, the posts must be written by a blogger with a diabetes connection.  Also product plugs / advertising will not be allowed.  Posts that do no adhere to this policy will be removed from the master link lists.  (More about those lists below.)

What if I can’t write posts for all five days?  The idea for Diabetes Blog Week is that everyone who signs up to participate will post on all five days.  Although that is the goal, I absolutely understand that life sometimes gets in the way, so if you end up falling short of five posts that’s okay.  Diabetes can be stressful enough, so let’s keep DBlog Week fun and stress free.

How do I sign up?  Once again, I’ve created a form to submit your information.  Fill it out and you will be signed up and added to the Participant List within 24 hours.  There is a space on the form for you to let me know if you have any questions, and you can also email me at any time at DBlogWeek@bittersweetdiabetes.com.

Fill out my online form.
Will there be a master list of posts for each day?  There sure will!  Before things kick off on Monday will add daily Link Lists on the Diabetes Blog Week topics page.  Once you’ve published your post each day, be sure to add it to that day’s list by entering your blog name and the url of that day's post.  This way we’ll have all posts linked in one central location, which makes it easier for people to hop around and read all of the posts.  Please do not “pre-post” your links - links may only be added on the day that we’re blogging about that topic, and your post must be live on your blog when you link it.  (Early posts will be deleted from the list.)

How about a button or banner for my blog?  Why yes, of course!  If you’d like to display the button or banner on your blog you’ll find the HTML Codes below - just to make things a little bit easier.  Highlight the code in the box, then copy and paste it into the HTML section of your blog’s sidebar or post or where ever you want to display the graphic.

Grab the Banner
Diabetes Blog Week

Grab the Button
Diabetes Blog Week

What if I want to tweet or Facebook about Diabetes Blog Week?  That would be awesome, you can use the hashtag #DBlogWeek.

What else do I need to know?  Great question.  I’ve tried to cover everything, but I’m sure I missed something.  So please leave any questions in the comments section below or email them to me at DBlogWeek@bittersweetdiabetes.com.  I'll be sure to answer you as soon as I can.

Thank you all again for the outpouring of support during the last seven Diabetes Blog Weeks, and I’m thrilled to be doing it an eighth time.

Tuesday, May 2, 2017

Grains of Sand……

SandCastleSometimes I think of the Diabetes Online Community (or DOC) as a huge beach, and each of us are the tiny grains of sand that make up our beach.  Sometimes we quietly lay there, sometimes we drift in and out with the tides, and sometimes we come together and do something huge.  When that happens, I see us as a big beautiful sandcastle.

Last week I once again attended the HealthEVoices conference.  (I attended in 2015 as well, but didn’t apply last year because it conflicted with another event).  I love this conference because it opens my eyes to all of the other health communities out there.  Amazing people doing amazing things.  And although their conditions may be different from mine, a lot of what we are addressing is the same.  Stigma, advocacy, privacy, burn out - these are just some of the topics we discussed that we all relate to.  When we share what has worked or hasn’t worked for us, and why, we can learn from each other.  We make our communities stronger.  We all become more effective.

So my take away from #HealthEVoices17?  You are but a grain of sand on a large beach.  But don’t forget that your beach is not the only beach.  Take a look at the other gorgeous beaches and all of the beautiful grains of sand they hold.  You can learn so much just by visiting their shores.  There are a lot of the other amazing sandcastles out there!

Disclosure: Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

Wednesday, April 26, 2017

May is almost here.....

And you know what May means, don’t you?  It means Diabetes Blog Week!!

“Diabetes
I’ll admit, I’m a little bit behind on things this year.  I’ll also admit it has crossed my mind more than once that perhaps #DBlogWeek has run its course.  But I have had a few questions and seen some interest- so I’m game to give it another go.

Sign ups will open on Tuesday, May 9th.  Yes, they normally open on a Monday, but I have an endocrinologist appointment on Monday, May 8th and that’s just too much stress in one day.  This year we’ll do Diabetes Blog Week for just five days again, May 15 - 19.

I’m still working on finalizing the topics, so if you have suggestions I’d love to hear them.  Please email them to me at dblogweek@bittersweetdiabetes.com.

A million thanks for all of the enthusiasm and support for #DBlogWeek over the last seven(!!) years and I’m looking forward to getting year eight underway!

Tuesday, April 4, 2017

Why Don't You Change it Out?

“Ouch!”

From the moment I inserted the infusion set, it hurt.  Not a constant throbbing pain, but a soreness that spiked up every time something brushed up against it.

“That site still hurts?” Pete asked.  “Why don’t you change it out?”

I can tell you exactly why I didn’t.  This sore site was working really well.  You know what I mean, that blissfully flat graph on the CGM that can be so difficult to achieve.  There was no way I was wasting a good site just because it hurt when something touched it.

Let’s read that last sentence again.  There was no way I was wasting a good site just because it hurt when something touched it.  The more I think about it, the more I realize how weird the way I think is.  What rational person does not try to relieve something painful?  Why is wasting a site given a higher priority than my own comfort?  Good blood sugars are important, but isn’t being pain free just as important?

Honestly, the answer is no.  I had planned to keep that painful site in until today, when it would be time to change it out.  I did get a bit of a reprieve towards the end of the day yesterday when I started to struggle with unexplained highs that wouldn’t come down.  I decided the painful site was starting to go bad, so I swapped it out 12 hours ahead of schedule.

It’s nice to be back to an infusion site that doesn’t shoot stabs of pain every time it’s touched.  But I can’t help being annoyed with myself because I value a stupid infusion site more than I value my own comfort.

Friday, March 31, 2017

Turning a Failure into a Success....

Yesterday was not really my best day.  I got engrossed in a project and it was late afternoon before I realized the only thing I had to eat or drink was my morning cup of coffee.  It’s definitely a weakness of mine - the fact that I can get so absorbed in what I’m working on that hours fly by unnoticed.

I was pretty annoyed with myself as I changed out of my pajamas and hopped into the shower while realizing it was almost time for dinner and I hadn’t gotten to the store to pick up something to cook.  And I was starving, considering I hadn’t eaten all day.  A whisper of a thought drifted through my mind…….”hadn’t eaten all day, great time to do a finger-stick and calibrate”.  My finger-stick came back one point off from my CGM.  And according to my graph, I had stayed between about 80 and 120 all day.


To which another whisper of a thought replied…..”well, look, a basal test got done today, and those daytime basals are spot on”.

Now I don’t recommend getting distracted and skipping breakfast, lunch, snacks and water all day.  And I did make sure I had a (fairly) balanced and (somewhat) healthy dinner.  But instead of beating myself up for failing yesterday, I’m going to cut myself a break this one time.  After all, I did manage a very successful test of my basal rates.

Thursday, March 23, 2017

Box of Needles.....

When I was in high school, I didn’t want my friends to know I had diabetes.  I did everything I could to hide it, pretending I was just like the other kids.  But as I went off to college, I felt I had a fresh start.  I didn’t know anyone who was going to the same college I'd be attending  So I felt that telling classmates I had diabetes wouldn’t be awkward, since I hadn’t been hiding it from them for years like with my high school friends.

The fresh start worked and I no longer hid diabetes, but I also didn’t talk about it much.  I was still the only person I knew who had diabetes.  And it still made me feel different, and also ashamed because I knew I wasn’t doing very well with my diabetes management.  So even though I wasn’t hiding it, I wasn’t exactly loud and proud either.

One evening I was at a friend’s apartment for a party.  The bathrooms in our on-campus apartments had storage closets with sliding doors for stuff to be stowed.  Someone had left the sliding door open, and I couldn’t help but notice an oh-so-familiar-to-me box of syringes.  I wondered who it could belong to and I couldn’t get it out of my head.  So I asked my friend about it.  As it turns out, his roommate, who I didn’t know all that well, had diabetes.  “Yeah, he always ends up in the hospital because he'll eat a big bag of M&Ms.”  I was kind of shocked.  Shocked because I wasn’t the only one with diabetes.  Shocked because I wasn't the only one who wasn't doing very well with my diabetes management.  And also shocked because this poor guy kept ending up in the hospital.  After all, I ate more than my fair share of M&Ms as well, but I was okay.  I couldn’t imagine what I was doing, or actually not doing, could land me in the hospital.

I wish I could say this was a wake-up call and I started working harder at diabetes.  But that wouldn’t come for many years later.  I wish I could say I talked to this roommate and commiserated about life with diabetes.  But I didn’t.  I didn’t know how to.  I didn’t have the tools.

I honestly believe things would be different for me if I was a college student today.  I lacked support back then, but today support is ready and waiting.  One great source is The College Diabetes Network.   They have launched Off to College Booklets for students and parents. You can check out a preview of the Parent Booklet and the Student Booklet and can request free copies to download here.

I really wish resources like these were around when I was in college.  And I wish my college had been a part of The College Diabetes Network.  Maybe it would’ve helped me feel comfortable enough to talk about diabetes with my friend's roommate.  And maybe, all these years later, we’d still be in touch.

Instead I wonder how things turned out for him and hope that he’s doing well.