Tuesday, July 19, 2016

Feeding the Soul - #cwdffl16 Part 1 . . .

In 2011, Pete and I attended our first CWD Friends for Life.  And we happily went back for the following three years.  But last year, we decided Pete deserved a vacation that DIDN’T revolve around diabetes.  #blamePete  Okay, okay, that isn’t entirely true.  We decided together that we both needed a year when our vacation dollars were spent on something without a diabetes focus.  Sure, we can’t really take a vacation from diabetes, but going somewhere non-diabetes related is important sometimes.  And so we took a Canada / New England cruise, which was a fantastic adventure.  But we missed FFL.  A lot.

So this year, it was time to go back.  And we’re both thankful that we did.  Friends for Life is more than just a conference for us.  It’s also a family reunion and a vacation and a second home and a bunch of other indescribable things with a ton of happy feelings.  It’s a week when I get to hang with some of my most favorite people from the internet.  In short, it feeds my soul.  And here is why . . .

DisneySpringsI got to spend time with Cara and Becky.  Cara and I call ourselves twins because we were born on the same date and are so much alike. So time with her is always wonderful. And finally meeting Becky in real life, who came all the way from the UK, was a huge treat this year.

RickTripI've been Twitter pals and blog pals with Rick and Trip for quite some time. Finally getting to hang with them in person was priceless!

NewEnglandersI reunited with my fellow New Englanders in the expo hall.  Funny thing is, I don’t think I’ve ever actually been in New England when I’ve seen any of them.

DinnerDinner and silliness are always important!!  I love this crazy bunch.

WilTripI had no idea Wil would be attending, so seeing him was a very nice surprise.  He wrote a great post about his experience as a first-timer this year.

DontStopBelievinDiabetes can feel so isolating at times.  Working primarily from home in the on-line world also feels very isolating.  So spending the week in a place where I felt decidedly not-isolated was exactly what my soul needed.  And exactly what Friend for Life gave me.

Tuesday, June 21, 2016

Eight . . .

eight-800pxEight years ago today I started Bitter-Sweet.  Yes, there are a few posts written in the beginning of 2008, but those were originally published over at TuDiabetes back when members had the capability of creating a blog on that site.  But June 21, 2008 was the day I created this blog site and my Bitter-Sweet journey began.

Now I will admit, given the chance I would opt out of diabetes in a minute.  But since that isn’t about to happen any time soon, I’m so thankful I have this blog to help me connect with other fabulous PWDs and share all my ups and downs.  With that in mind, here are eight wonderful things that probably wouldn’t have happened if not for my blog . . . .
Thank you to everyone who had read or commented or tweeted or befriended me in the past eight years.  My world is a much better place because of you.

Monday, June 20, 2016

Insulin for Syrians #insulin4all

It is easy to complain about living with diabetes.  It is easy to be frustrated by insurance policies and the hoops we jump through for our diabetes care.  It is easy to be angry about how much of our income we spend on diabetes supplies.  And it is easy to get burned out on diabetes advocacy at times, because there are so many important causes out there that need our attention.  I’m sorry to say I’ve felt the burnout quite a bit in the past few month.  But then, something comes along to put it all in perspective.

What if you didn’t know how or when you will get your next bottle of insulin?  What if you didn’t have test strips?  What if the healthcare system was completely shut down?  What if war forced you from your home?  How would you survive?

I'm fortunate to know I have the supplies I need to live with diabetes.

I have NEVER faced a question like that.  In over 36 years with diabetes, I always knew I could get the insulin I needed.  So the Insulin for Syrians appeal launched by T1International last week was a huge wake up call about how lucky, how privileged I am.  I made my donation last week, and I’m grateful to be able to help spread the word about this initiative, especially since today is World Refugee Day.

If, like me, the thought of wondering where your next shot of insulin is coming from scares you and makes you sad, please consider a donation to Insulin for Syrians.

Monday, June 6, 2016

Admitting I Was Wrong . . . .

I’ve thought long and hard about whether I should write this post.  For weeks I was certain I would never put this out there.  But then I thought about how it is important to me to be truthful.  So here comes the part where I admit I was wrong.

At the end of last year I found out my insurance company would no longer pay anything toward the brand of insulin I use.  There would be no co-pay on Apidra.  If I continued to use it, I would pay 100% of the cost.  Later I received the same letter about my Bayer test strips.  I spoke to my endo and he agreed we would appeal.

The test strip fight went well.  My insurance company called me to verify what pump and what meter I use.  I confirmed that I use the Medtronic 530G and the Bayer Contour Next Link.  They talk to each other so my blood sugar number automatically transfers to my pump, reducing the risk of user error when dosing my insulin.  (Meaning I wouldn’t accidentally manually type in the wrong blood sugar number.)  My test strips were approved and my co-pay is the same as it was in 2015.

The insulin fight was another story.  In the end, my endo wrote a new prescription for NovoLog and I said good-bye to my beloved Apidra.  The insulin that has helped me keep my A1C at target levels for eight years.  The insulin I had no interest in ever switching away from.  The insulin I was sure was the best fit for my body.

Or maybe not.  I filled that first reservoir with NovoLog and waited to watch my blood sugars turn to crap.  But they didn’t.  The NovoLog is working just fine.  Sometimes I think it’s working better.  I feel like my overnights are flatter.  Last night I stayed between 116 and 82 for eight hours and woke up with a fasting blood sugar of 99.  I can’t complain about that.

I also feel that I’m having a lot less low blood sugars than I had when using Apidra.  And it isn’t coming at the cost of more highs either.  I do need to admit that Pete and I are working on shedding our many extra pounds, so I’m eating better and moving more.  And I know that is helping to smooth things out.  But I also honestly feel the new insulin is working better for me.  I have to admit I was wrong when I said Apidra was the best fit.

BUT!!!!  And here is the important part . . . . I am still 100% opposed to insurance companies dictating what brand of medications and devices we are able to use.  I believe that decision should rest wholly in the hand of patients and their medical teams.  Which is why I thought long and hard about putting this post out there.  In the end, I feel I was lucky.  I’m lucky that my new insulin works great for me.  I do believe trying new brands might not be a bad idea once and a while, because maybe something out there will work better.  But overall, people with chronic illnesses need to use what ever keeps them the most healthy and fits the best in their lives.  We should not be at the mercy of what our insurance companies dictate.

Friday, June 3, 2016

Tips & Tricks - A Guest Post

*** During Diabetes Blog Week I received an email from my friend, Dan Patrick, sharing a tip / trick he finds helpful.  Dan doesn’t have a blog of his own so I asked if I could share his tip here and he agreed.  But first, some background.  I originally met Dan in Vegas at the 2015 Diabetes Unconference.  He is friendly, he is smart, he always presents a positive attitude and he quickly has become a favorite person of mine.  (He is also very tall.  Which is neither here nor there but for some reason I feel compelled to mention it.)  Dan is a hero of mine because he doesn’t back down from a fight and he is always willing to share his experience in order to help others.  You guys, he fought Medicare for CGM coverage and WON!!  So I am truly honored to share the following tip from Dan.

“I buy glucose tablets in bulk to save money, and re-use old pill containers to carry just the right amount when traveling.”

It is the beginning of my day.  Before I leave the house to begin my travels, I check my backup system of glucose tablets.  Carrying glucose tabs gives me the opportunity to quickly respond to the onset of falling blood glucose levels and raise my low blood sugar quickly.  The local grocery store sells glucose tablets in a tube container of 10 tablets or a container of 50 tablets. I usually purchase two 50 tablet containers of different flavors so that I can mix up the taste.

I have found the best storage for glucose tablets is to select various used pill containers and fill them with different quantities of glucose tablets, and I have some with me most of the time.  Whether traveling during the day or night, glucose tablets are close at hand.  The used pill containers protect the tablets and I have a visual check on the number of tablets with precise carb amounts.

In conclusion, I now have old pill containers in many locations.  No one consumes my glucose tablets, like they raided my emergency candies.  When I take a tablet, I know precisely how many carbs I have consumed in order to avoid or turn around a possible hypoglycemic event.  This micro control has allowed me to minimize roller coaster rides from a low to a high blood sugar range.  This hack results in a lower purchase cost for glucose tablets, protects the tablets based upon the safety of the used-pill containers, and assists me with better control to minimize hypoglycemic events.


Oh, btw the pill containers are very hard and with child-proof lids will stay dry when dropped in water.

*** Thank you Dan!  What a great idea.  I appreciate you letting me share your tip!!

Monday, May 23, 2016

Seventh Annual #DBlogWeek Wrap Up

200x200Last week seemed to go by in a flash, and this year’s Diabetes Blog Week is officially over.  I will admit, I was a little bit afraid this event had run it’s course and maybe it was time to retire #DBlogWeek.  I could not have been more wrong!  (I usually don’t like to be wrong, but I’m completely fine with it this time!!)

This year saw 131 bloggers officially signed up to participate.  The link lists contain about 450 wonderful blog posts written last week.  Did you forget to add yours?  Or did you fall behind but still want to tackle the prompts?  Don’t worry, the lists will remain open for two more weeks so you can add your post.  (In fact, I have a few more posts I plan to do myself, including those wildcard topics that I never got to last week.)  After the lists will are officially closed to new entries, they will remain on-line for future reference.

As always, I couldn’t have done Diabetes Blog Week without a lot of help.   Thank you to Cherise for featuring DBlogWeek in last week’s #dsma chat.  Thank you to everyone who answered the #DBlogWeek survey and contributed great topics and suggestions for improving the week.  Although I didn’t get all of the ideas implemented, I will be working on more of them to make next year even better.  (But first I’ll be trying to catch up on reading all those posts that I missed last week!)

I can’t close out the 2016 Diabetes Blog Week without a HUGE THANK YOU to all of you!  I’m so grateful to everyone who blogged, read posts, tweeted, Facebooked, left comments and lurked with us once again for DBlogWeek.  This whole week, and the six #DBlogWeeks that came before,  wouldn’t be possible without all of your enthusiasm and participation.  I’m more thankful than you know.  And I’m already getting excited for next year and the Eight Annual Diabetes Blog Week!!

Friday, May 20, 2016

Tips and Tricks - #DBlogWeek Day 5

200x200Welcome to the last official day of Diabetes Blog Week 2016!  Bloggers who decide to keep a seven day blog week schedule will be posting over the weekend using our Wildcard Topics.  You 7-Day #DBlogWeek-ers have my complete admiration, but I think I’ll be using the weekend to try to catch up on reading and commenting - which I have fallen dreadfully behind on.  I’ll be back Monday for the #DBlogWeek Wrap Up.  But first, it is time for some Tips and Tricks.

Our topic today is Tips and Tricks.  Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I think as diabetes bloggers and #DOC members, we are constantly sharing our tips and tricks just by talking about our daily lives with diabetes.  I’ve learned so much from our community, and I always try to share day-to-day diabetes things that work for me.  Like test strip containment and where I put my MiniMed Connect and cute meter pouches and more.  So I wondered if I’d be able to come up with anything new to share today.  And then I realized my most important tip of all - the tip I use all the time - the tip that I value most.

Don't ever stop learning!!!

I’ve had diabetes for over 36 years.  But that doesn’t mean I’m not constantly learning new things.  Pump trainers can help explain advanced options of  a pump.  Dieticians can help improve the way I eat.  CDEs are a wealth of information.  My endo often has the latest d-info to teach me.  But there is so much more beyond these "official" sources of information.  There are diabetes conferences like TCOYD and FFL and Diabetes UnConference.  And blogs.  And Twitter.  And Facebook.  And diaTribe.  And #DSMA.   Connecting with other people living with diabetes is probably where I’ve learned the most.  The day-to-day tips and tricks have helped me become an engaged, educated, empowered person with diabetes.  I’m thankful for our community for that.  And I can’t wait to see what things you still have left to teach me!

Find more Tips and Tricks over 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.

Thursday, May 19, 2016

The Healthcare Experience - #DBlogWeek Day 4

200x200Welcome to day four of Diabetes Blog Week!  I hope you’re having a great time and are ready for our last few days.  So, let’s get to it.

Our topic today is The Healthcare Experience.  Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Overall I guess I’d say my healthcare experience isn’t so bad.  I mean, if I compare myself to my husband, whose only issue is some heartburn, then yes, things could be a lot better.  So at the top of my Wish List is not to have a chronic illness and my Biggest Frustration is diabetes.  But when you put that aside, I know my situation is pretty damn good.  I have a great medical team and am able to receive the things I need to stay alive.  But still, I have a few wishes on my list . . . .

Liste-2400pxWish List for My Endocrinologist:  Not much on this one.  We respect each other and take on my care as a team.  You never make me feel rushed during my appointments, and yet you are also always on time.  (I never have more than a few minutes to wait once I arrive for my appointment.  Somehow you and the office staff have scheduling down perfectly!)  You explain things thoroughly and also answer each and every question I have.  Although I have to mention, when I saw you two weeks ago and we gave my basal rates and carb ratios an overhaul, we definitely dialed the insulin back too much.  I was stuck in the 200s for days and couldn’t come down until I rage bolused!  It’s okay though, you’ve taught me well and I’ve tweaked things a bit more and have landed somewhere in the middle between the old settings and the new and things are going splendidly.

Wish List for my Optometrist:  Not much here either.  I’m trying to remember how long I’ve been your patient, and it might be about 30 years now, right?  You’ve always made me feel respected.  Back when we discovered some small bleeds in my eye, you found a balance of treating the matter seriously without making me panic more than I should.  We stepped up my monitoring, but as you predicted, things cleared up on their own.  If things should ever start to decline again, I am confident that you will help me get the best care and the best outcome possible.

Wish List for my Insurance Company:  Yeah.  This is the part when I have some major grumbles.  “We’re in this together.”  No, we aren’t.  You make me fight for the number of test strips I need.  You make me fight to keep the meter that communicates with my pump.  You’ve forced me to change my insulin, when I’ve been doing so well on my current brand for eight years.  You leave stupid messages on my voicemail that insinuate I’m an idiot.  Seriously, if I have questions about taking my medications, I’m certainly not going to ask your pharmacist, who doesn’t know me at all.  I have enough common sense to call my doctor, who knows me well and is the one who prescribed the medication in the first place!  And while one-on-one coaching with a health advocate for my chronic condition sounds like a good idea, it was somewhat discouraging when I spent an hour on the phone with her only to hear her say “Wow, you know more than I do.  You could be doing my job.”  You think??  (Although I will dial back my rage a bit and acknowledge that the health coaching is probably very beneficial to many patients who haven’t already received the proper education.  So okay, you get a point for that.)

Wish List for The Healthcare System Overall:  I feel the healthcare system in our country is so freaking broken, I don’t even know where to begin.  All patients need access to the tools they require to stay healthy.  And that access need to come at an affordable cost.  I know I have my grumbles (see above) but I also realized that I am so so blessed and yes, privileged, to have the things I need - even if the costs are very high and the insulin isn’t the best brand for me.  People over 65 should not have to give up devices that are crucial to their care and wellbeing.  People should not be on the brand of device that their insurance company dictates they use, but should be able to use the brand that works best for their personal situation.  Same goes for medication brands.  And mostly, people should not have to choose between buying the things they need to stay alive and healthy or paying their mortgage and putting food on their tables. 

This is just the tip of the iceberg, and I realize my Wish Lists didn’t turn out to be actual lists but are discussions instead.  (Oops)  But there are probably about 100 other posts to be read today, so I’ll end here and pass the torch to other #DBlogWeek participants who have important things to say on this topic . . . .


You can find more posts about The Healthcare Experience on this list.

What is Diabetes Blog Week?  Click here for an explanation and to sign up.  You can also check out the Participant’s List here.