Diabetes Around the World . . . .

I’ve been leading DiabetesSisters Virtual PODS for almost two years now.  I love getting together each month to discuss diabetes with women all over the United States.  I’ve learned so much from each and every “sister”.  It’s been especially interesting to hear some of the different challenges we may face based on where in our country we live.  Weather can cause challenges.  Urban areas may have different resources than rural areas.  Different types of foods may or may not be available.  It really gives me something to think about.

And when I co-hosted our first Global PODS in February, with Elizabeth from T1International, all of these things got bumped up to the next level.  There are challenges faced by women with diabetes in other countries that I have never fathomed.  And still, we also have so much in common, which is a comforting and uniting circumstance.  So I am very excited to co-host our second Global PODS tomorrow.  I can’t wait to reconnect with some of the women from around the world that I (virtually) met last time and get to know some new attendees.  We’ll be discussing access, comparing and contrasting pressing access issues in each of our countries and brainstorming for possible solutions.

If you are women living with any type of diabetes and would like to join us, please email me or Elizabeth so we can send you the meeting link.  We’ll be holding the Global PODS tomorrow, Friday July 29th, at 3pm GMT.  (Click here to see what time that is in your corner of the world . . . . )

Feeding the Mind - #cwdffl16 Part 2 . . .

In my last post I talked about how Friends for Life is very much a social occasion for me.  Spending time with my d-family is important for my mental health and happiness.  But Friends for Life is also about the sessions and learning new things and learning more ways to live a happy and healthy life with my chronic illness.  In addition to feeding my soul, FFL feeds my mind.

One might think that after living with diabetes for over 36 years,, there isn’t much new to learn.  But that isn’t true.  New treatments and technologies are being developed continually and I want to know what my future might hold.  So the opening keynote, delivered by Ed Damiano who updated us on the iLet, set the tone for the buffet my mind was embarking on.  And since I’ll no longer be attending JDRF Government Day and hearing annual research updates, I was really excited to hear what Aaron Kowalski had to say about things such as encapsulation, smart insulin and closed loop systems - all in various stages of development and / or clinical trials.

Feeding the mind and becoming an educated patient isn’t just about learning what treatment options may be coming in the future.  It’s also about learning to take care of ourselves.  During MasterLab, Dr. Heyman gave a fantastic, and (for me) a much needed, session entitled "Don’t Forget About You: Taking Care of Yourself While Advocating for Others".   It was a great reminder that we need to make sure we are not overextending ourselves,and that we shouldn't feel guilty about taking time for self-care.  Or maybe that is just what I took away from it.  In any case, it’s something I need to be reminded of.

Then there are the (as I call them) "touchy-feely" sessions.  These are sessions that I can't really tell you much about, because we discuss things in a safe space where nothing said will leave the room.  We open up about issues such as dealing with complications and diabetes burn-out and topics that tip more on the emotional end of the scale than the medical one.  I need that safe place and the bonding that occurs as we bare our souls, and that ah-ha moment when I realize that being bogged down by my chronic illness doesn't make me a failure - it kind of makes me normal.

The truth is,  more often than not I look forward to Friends for Life because it’ feeds my soul.  But I shouldn’t undervalue the fact that is also feeds my mind.  It’s like a gourmet dinner followed by a decadent dessert, and I appreciate every minute.

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 . . .

I 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.

I'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!

I 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.

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

I 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.

Diabetes 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.

Eight . . .

Eight 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 . . . .

• Becoming an Educated (and thus, Healthier) Patient.
• Becoming an Advocate and going to The Hill.
• Doing Art for a Book Cover.
• Coordinating Diabetes Blog Week seven times over!!
• Finding Local Support.  Actually, my local support group has expanded quite a bit in 8 years but still contains two very treasured friends from that very first dinner.  (Even though one friend is now Not-Quite-As-Local-but-Local-Enough.  ie: an easy under 2 hour car ride.)
• Becoming a PODS Leader.
• Learning about and Attending Patient Conferences!!
• Meeting so many Awesome PWDs who are Family to Me.  And yes, that collage is more than 4 years out of date, and would be so  much bigger now!

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.

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.

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.

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!!

Seventh Annual #DBlogWeek Wrap Up

Last 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!!