Monday, August 8, 2016

Four Lows, A High and A Snuggly Cat . . .

Last night I slept without a sensor.  I’ll be traveling later in the week and delayed inserting my new sensor so its life will span the entire time I’m sleeping solo in a hotel room.  I don’t know how diabetes inherently knows that I’m lacking the safely net of my sensor, but somehow it does.  And it picks that time to go completely off the rails.

Pete and I are working our way through The West Wing on Netflix, and we settled in to watch another episode from Season 2 before bed.  I did a finger-stick to make sure things were good.

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They were.  But I did another about an hour before bed to see which way my numbers were heading.

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Ugh.  While 73 isn’t too terrible a number for me in general, the fact that it flashed up an hour before bedtime, and that I had dropped 20 points in 30 minutes, was not what I was hoping for.  So I had four fruit Tootsie Rolls and we watched the end of the episode.  An hour later I was ready for one last finger-stick and some much needed sleep.

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Diabetes had another plan.  54 is an unsafe number for me at any time, and the fact that I continued to drop after treating was troubling.  So I ate three Orange Cream Glucolifts (yum) and brushed my teeth.  Then I played with K.C. until the 15 minute mark had passed so I could confirm I was back up and finally sleep.

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Nope, diabetes was really laughing at me now.  My swearing woke Pete up, who saw the 43 and headed downstairs to get me some juice.  Juice isn’t really my low treat of choice, but it always brings me up and works very fast when I’m really low.  So juice it was, and a good amount at that.  My only symptom during this long bout of lows was some hefty anxiety, which melted away.  So I brushed my teeth again and drifted off to sleep.  Until I woke up two hours later with my mind nagging me to finger-stick again.

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Okay, WTF??????  I didn’t want to wake Pete again so I was much quieter when I swore.  I knew I probably needed more than just the Glucolift on my nightstand.  So I stumbled downstairs, where I ate two Peeps horded from Easter, some Dots and four crackers with crunchy peanut butter.  I went back upstairs to brush my teeth a third time, during which I dropped the toothpaste and knocked over a cup and ended up waking poor Pete up anyway.  I played on my phone a bit until I was confident it was safe to sleep.  And it was a nice three hours of rest until K.C. meowed me awake to give her a snuggle.  She does this several times each night.  She’s very sweet and loving, which means I’m  generally very tired.  But in this case, I was glad she got lonely, because as she settled in next to me and I began petting her I could tell things weren’t good.  The palms of my hands and the soles of my feet felt like sandpaper.  My lips felt like they would start cracking at any minute.  And my mouth was so so dry and I was so so thirsty.

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Yeah.  I don’t even know what to say.  I took a correction plus one unit, as is usually needed when I find myself over 250.  I got up yet again to have some water and check for ketones (which thankfully were negative, so at least one thing went right last night).  When the alarm went off two hours later, I was still 207 but with enough active insulin working to bring me back into range.  However, I don’t think there is enough active caffeine working to rid me of feeling like I’ve been run over by a truck.

Okay, diabetes.  You won the battle last night.  But tonight we spar again, and I’m really hoping to win this time.  Because I really need to sleep . . . .

Thursday, July 28, 2016

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.

Global-HeartAnd 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 . . . . )

Tuesday, July 26, 2016

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.

slidesOne 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.

Mark-HeymanFeeding 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.

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?

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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.

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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.

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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.
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“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.

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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!!