Diabetes UnConference – A Limerick of Love

There once was a dream and a venture
A weekend spent entirely without censure
We called it the Diabetes UnConference
It was filled with d-victories and confidence
The memories of it all we will treasure.

So much love!

Just a few of the many people I met at the first-ever Diabetes UnConference. We immediately shared a bond and a friendship that is indescribable.

Giving Thanks

Thanksgiving may be over, but there’s still so much to be thankful for. I’m thankful for so many things – but especially in diabetes-circles, I’m thankful for discovering the DOC, for meeting so many local women who have diabetes (both type 1 and type 2), and for being able to spend time with them and fellowship on a regular basis. They are such a vibrant and lovely group of women who share their experiences openly, and listen to the rantings of all of us who have had “good” days with diabetes, and “bad” days with diabetes. We all just *get it*, and I truly appreciate the time and effort they spend to come over and hang out. (They also bring amazing snacks and wine to share, which are always welcome in my house!)

Love them!! My d-girls

Last night, we also collected coats and winter wear to donate to our local Coats for the Children campaign. There’s a stack of over 20 adult and kid’s-sized coats, mittens, ear-muffs and gloves ready to be donated. It feels so good to give thanks, and also give back to the community to those less fortunate. My heart is so full of love and joy!! (And for the record, I am not going to the Mall or anywhere else with crazy crowds from now until after Christmas, because the fastest way to ruin my sense of holiday cheer is to have someone flip me off over a parking space. Not going to do it!!)

Never There

Never there…..kind of like the FDA not including diabetes in their series of patient meetings!!! Go sign the petition so we can have the FDA actually *be there* for us for a change!

I need your arms around me, I need to feel your touch
I need your understanding, I need your love so much
You tell me that you love me so, you tell me that you care
But when I need you baby, you’re never there

On the phone long, long distance
Always through such strong resistance
First you say you’re too busy (Too busy to meet with diabetics?  There’s 26 million Type 1 and Type 2’s in the US alone!)
I wonder if you even miss me

Never there
You’re never there
You’re never, ever, ever, ever there

A golden bird that flies away, a candles fickle flame
To think I held you yesterday, your love was just a game
A golden bird that flies away, a candles fickle flame
To think I held you yesterday, your love was just a game

You tell me that you love me so, you tell me that you care
But when I need you baby
Take the time to get to know me (FDA, get to know us!!!)
If you want me why can’t you just show me
We’re always on this roller coaster (Roller coaster of blood sugars, with test strip results we can’t completely trust….)
If you want me why can’t you get closer?

Never there
You’re never there
You’re never ever ever ever there
~Never There lyrics, by Cake (with some additional thoughts by yours truly.)

2 Years

It’s been 2 years today since that moment I can’t ever shake. The feelings and emotions are still so fresh. I was on a stretch of road I’ve ridden or driven hundreds of times over the past 20+ years. The drive between where I live currently, and my hometown, around 70 miles away. It was morning, the sun was behind us, shining into the back of the car window. I was in the back seat with my (then) 4 month old daughter, who was snoozing in her car seat, pacifier squeaking and bouncing away like Maggie from The Simpsons. I looked up into the rear view mirror and shared a glance with my husband, who was driving. I nodded that everything was OK, and smiled down at our daughter, relishing in her tiny little life, while looking ahead at the road that was leading us to the hospital in my hometown to see my Dad…where I didn’t know (but really, I did know) that he had already died earlier that morning.  In that one moment, I knew: my life had changed, again. Better start dealing with it.

Love you, Dad. Always.

My heart still aches, remembering this arrangement was only a step away from my Dad’s casket.

My Dad was so many things….Husband, Father, Grandfather. He was a jokester, a sports-lover, a salesman, and could strike up a conversation with anyone. He was also a Type 2 diabetic, and he had a ton of complications. Some were probably related to diabetes, but many were not.

In thinking of the last 2 years, I can’t help but wonder….is there anything he could have done better to take care of himself that would have given him 2 more years, or more, with us? I don’t want to sound selfish or unkind, but I get a little bitter thinking about all the “what if’s.” What if he had eaten better, what if he had lost weight, what if he had listened to me (and the multitude of doctors) and stopped smoking 30 years earlier….could he have been in our lives for longer? I could have given him so many more hugs, shared so many silly jokes, and asked him so many more questions. He could have seen his grand-daughter grow and flourish.

And then I apply those same concerns to myself as well, wondering….is that cupcake I just ate going to cause a high blood sugar that tacks onto the years of highs and lows that have taken such a toll on my body already? Is each high/low sugar taking away one minute, one hour, one day, one year more that I could have spent with my loved ones? I don’t know, and I really don’t want to think about it that way.

Appropriately, this morning was my 3 month checkup with the endocrinologist. Good news! My overall cholesterol is lower than it’s been in years (with HDL 67, LDL 106), my A1C is 6.4, and all my other blood-work numbers look great. I may not be perfect in my management of my health, but I’m trying. Despite any contradictions from the wizened sage Yoda, I’m trying (and I guess, technically doing things that actually add up to the trying) really hard, and I think that is the most I can ask of myself, or expect from anyone else. I am trying my best to be here and be healthy for as long as possible, and I hope the people who love me can recognize that.

I love you, Dad

The last time my daughter saw my Dad. The smiles on both of their faces are priceless.

Wordy Wednesday – Strip Safely

Unless you’ve been living under a diabetes rock (let’s face it, some of us DO crawl under a rock on occasion with regards to diabetes – no judging) you’ve probably already heard of the Strip Safely campaign. But if not, in a nutshell, it’s this: “Blood glucose test strips are at the center of diabetes life. The FDA acknowledges there are inaccurate strips in the marketplace but has no process to remove them. People with diabetes are at risk from inaccurate strips. Let’s change that.” And with regards to the July DSMA Blog Carnival topic: Test strip accuracy is important to me because I want to be here for a long, long time, and my health depends on the accuracy of the tools I use to manage it.

The rising cost of healthcare seems to be moving in lock step with the increasing numbers of people being diagnosed with Type 1 and Type 2 diabetes. If people with diabetes cannot trust key tools – i.e., test strips used in glucose meters to measure blood sugar levels – we use to help manage our disease and (hopefully) offset potential complications, how can we be expected to keep ourselves as healthy as possible so that we do not further drain our healthcare resources? It only makes sense for insurance companies and others with skin in the game to get involved with this. It’s a win-win for everyone involved if we can STAY HEALTHY. Strips & CGM sort of matching, yay!The picture above shows my blood sugar readings from the 2 main meters I use and my Dexcom CGM. While I’m thrilled that they are all within 10 points of each other, I’m not really thrilled at that number, but hey – it’s the common post-breakfast spike I tend to have and it’s already on it’s way down. Whew.

I feel I have the luxury of “trusting” my meters and their test strips to a good extent because I’ve seen my HbA1c numbers reflect what my glucose meter readings have told me over time. But I know at some higher ends of the glucose spectrum, and some lower ends, things can get sketchy with regards to accuracy. And what about all the other people who can’t afford expensive meters and supplies and have to “make do” with potentially sub-standard strips and meters? Like the campaign says: let’s change that.

D-girls Night Out

Since becoming more “diabetes aware” in the past few years, I’ve met so many wonderful people online, as well as many local diabetes friends, who happened to be women. We’ve started gathering together for girl’s nights on occasion, and last night was a celebration of one of our group’s 9 year diaversary. Everyone brought a snack to share – no rules, just bring something that tastes good! – and we ate and drank together, shared thoughts about our current pumps and CGMs, discussed a couple of studies people were participating in, and had a relaxing and fun night together. Happy 9 year diaversary, Erika!Two friends are Type 1’s who are both expecting little girls within the next 7-8 weeks. (I was SO proud of myself – I didn’t ask to touch their adorable baby bellies even one time!) I hauled out a bunch of Penny’s baby clothes and had them rummage through for anything they thought they might use.  It brought back such sweet (and sleep-deprived memories) of when Penny could wear those clothes….I still haven’t come to any solid conclusion about expanding our family. Well, I *think* I have, but I still waffle like Bisquick on a griddle. (Does that even make sense as a real analogy? What is my blood sugar right now for me to be coming up with such things??)  More thoughts on babies forthcoming, I’m sure. Babies in Type 1 bellies = awesome

I really don’t think I can express in the short space of this blog post how wonderful it is to hang out with these girls – we are all quite different in our age ranges, our jobs, our family statuses of being married or not, having kids or not (one is even a grandmother several times over!), and still share the common thread of type 1 or type 2 diabetes experience and understanding that I don’t necessarily have with all my other non-d-girl friends. At one point in the night, 4 or 5 of us had our pumps out and were bolusing for the upcoming snacky meal. Pink, purple, blue and grey pumps were taken out from pockets, side clips, and bras, and no one spared a second thought about it. As we shared our CGM readings, there would be a nod of, “geez, I’m high, too!” or the helpful friend going to grab my finger-stick meter so I could confirm if my low reading really WAS a true low or just a wonky CGM sensor. (No wonkiness – I ran low about half the night and even well into today, thanks to a certain red wine 🙂 )Hello, post-red-wine lowsI could talk all day about how awesome each and every one of these girls is in their own way. What accomplishments, what trials, what tribulations they have gone through that were similar or different from mine….yet, we were all knit together last night through the common bond of diabetes.

It’s this camaraderie that encourages me to NOT dismiss diabetes as something negative that happened to me. To never again push it into the background as something I just have to deal with on my own. I look forward to next month’s gathering with them, I’m driven even more to fund-raise and participate in the JDRF walk on November 2nd, to call into the TuDiabetes.org interview with Kerri this afternoon, and to continually stay involved and look for other ways I can interact with the greater community of people I know – online as well as offline – who have diabetes. For years, I felt alone and solitary in my every-day struggle with diabetes. Now, that is the furthest thought from my mind. D-girls Night OutD-girls Night OutD-girls Night Out(Shout outs to two d-blog friends Laura and Carlyn who are regular d-girls night attendees! And big thanks to ALL of you awesome girls who came over last night – you know who you are!)

Me and My Metformin

(I can’t help thinking I should make up a song with lyrics about “Me and My Metformin” set to the tune of this classic Sesame Street video: http://www.youtube.com/watch?v=sgkYHhG18uc  It was one of my favorite memories from childhood, and shaped my attitude around good dental hygiene, I’m sure.)

As I’ve mentioned before, I started taking Metformin a few months after I had a baby because I was having crazy issues with spiking blood sugars after breakfast that nothing else seemed to fix. Metformin is usually a drug given to Type 2 diabetics, but it appears I have Type 2 tendencies with regards to insulin resistance, even though I am most definitely a Type 1. Best of both worlds. Yay.

What I failed to mention was, it was my OB/Gyn who prescribed it for me. I was seeing my endocrinologist on a regular basis (every 3 months, baby!), but he had never brought it up as something that might help my continuing saga of insulin resistance, nor as something that may have helped with fertility issues. My OB/Gyn started me out on a pretty aggressive dose – 500mg of the extended release pills, twice per day. (I did inform my endo that I was taking it at my next appointment, and he was fine with it.)

Metformin

Metformin (Photo credit: Wikipedia)

Imagine my surprise when our little girl was 6 months old, I had been taking Metformin for about 2 months, and I suddenly realized one night that I was pregnant. (Of course, I had not gone back on birth control after having my daughter – it took such extraordinary measures for me to get pregnant with her, there was NO WAY it was happening naturally. Right?) Several pregnancy tests later confirmed it. We were over the moon with joy, called the OB/Gyn and made the proverbial 8 weeks check-in appointment.

I don’t think I can discuss this right now, but in short, I had a miscarriage. That is not the focus of today’s post, and I just can’t bring up those emotions today. The point is: I believe the Metformin at least “helped” in my ability to get pregnant on my own. Also, having recently had a baby, I’m sure that was a contributing factor to kick-starting my reproductive system. If Metformin could help me have a child on my own someday, we were destined to have a long and prosperous friendship.

My relationship with Metformin has gradually changed over the last (almost) 2 years that I have been taking it. About a year ago, I felt like it wasn’t  as effective as it had been when I first started taking it. I was getting strange overnight blood sugar spikes-and-hanging-out-for-hours in the 200s for no good reason. LOTS of them. On a whim, I tried cutting out the 2nd dose of Metformin that I was taking in the evening at dinner time. (My theory was that the Metformin was possibly lowering my sugar just enough to where my liver wanted to take back control and crank out some extra sugar to get me through the night.)  Magic happened! My sugars regulated back to overnight happy places between 90-120.

Things have been great with Metformin over the past year  (A1c’s have been consistently in the 5.9-6.3 range) until recently, when the dreaded post-breakfast blood sugar spikes have started up again. A couple of days ago, I tested another theory and didn’t take the Metformin at all. I had a TERRIFIC blood sugar day, with numbers on my Dexcom showing between 65-140 for an entire 24 hour period. No-hitter day!!!

…and then yesterday I tried not taking it again (see below.) Looks like I’ve got some work* to do with me & my Metformin. Dexcom Sans Metformin, Day 2(*Post Update -the “work” is what Scott mentions in his comment to this post – it’s tough to be patient and realize that ANYTHING could be causing weird blood sugar issues, and a couple of days of numbers isn’t really a good litmus test when you’re working on a theory. Oh, and I mention this in the About section, but ya’ll know, I am NOT a doctor or medical professional of any sort, so please don’t change your medications and what-not without consulting your own medical team of experts.)

UPDATE as of 5/29/2014 – A year later, and I am still taking Metformin daily. Not sure what that weird hiccup was, but taking Metformin out of my daily regimen of diabetes management was not in the cards. Overall, it’s been a “good” diabetes year. My A1Cs have been below 7, and while there are always the occasional WTH high or low sugar days, I feel like I’ve been swimming along, and swimming well. Let’s keep that up.