My Afternoon at the JDRF Type One Nation Summit

As promised... though several weeks late.

Several weeks ago I attended the JDRF’s Type One Nation Summit in my local area.  This is the first diabetes event I’ve attended outside of the annual JDRF Walk.  I’ve always wanted to attend an event like this – one that offered the latest in diabetes research and technology, and with speakers ranging from renowned endocrinologists and healthcare providers to celebrity Type Ones.

Ava was diagnosed three weeks after her 2^nd birthday, the day after Father’s Day in 2007.  We were shocked, heartbroken, angry, and scared to death.  We spent 5 days at CHOP – two days in PICU, and three in diabetes boot camp.  Three days to learn how to keep our daughter alive.  I wrote about this journey in two parts: How We Got Here Part 1 and How We Got Here Part 2.

What I didn’t know then was that that was the easy part.  The most difficult part was convincing a 2-year-old that pricking her finger several times a day and injecting her with needles 3 times a day (which later became up to 7 or more for a better insulin regimen) was vital to her and non-negotiable.  What they don’t teach you is dealing with your stress and fear, or your husband’s colossal depression, the inevitable fighting between the parents, or about the isolation.  We lived an hour away from CHOP, and an hour away from the nearest support group at that time.  We knew no one who had been through this.  We knew no one who even had type one diabetes. 

Owen was then in kindergarten, and friends we met through soccer introduced us to another couple in the school district whose daughter had diabetes.  They were wonderful – they gave me their phone number, offered to get together and share information, offered me books on diabetes, and said to call anytime. Still, I felt guilty for “bothering” them – they had been on their journey for over 6 years, and looked to me like they had it together. There was no support group in our area.  I turned to online forums and met parents from all over the country, including Sue – who lived about 30 minutes away with whom I am still friends today.

Today, we are almost 8 years in.  I’ve got this.  The management is second nature.  I calculate carbs like a skilled dietitian.  I can look at just about any food and tell you about how many carbs to bolus for.  I know which foods raise her blood sugar 6 hours after she eats it.  I know that excessive exercise on a hot day requires more checking, and especially overnight to prevent lows.  I know when a site is bad, and when the highs are just from that ice cream she ate 4 hours ago.  I know where she prefers her pump sites to be placed, and I know she doesn’t want people to know she has diabetes.  I help her through the tough days when she hates diabetes.  I help her feel safe on field trips.  I celebrate her triumphs in spite of this bullshit disease.  I try to remember that nastiness is sometimes because she is low, and sometimes because she is high.  I’m in charge of ordering supplies, changing pump sites, keeping the blood sugar log, scheduling appointments, and teaching her about healthy choices.

I never attended a single support group. I often considered starting one in our area, if for no other reason so that she doesn’t have to feel so alone.  I’ve been called on a handful of times by friends who knew someone whose child was just diagnosed.  And those parents are now friends too.  I’ve found a large community of parents via Facebook, and that’s been a blessing – to have friends who understand when you’re having a bad day, who understand your frustration with misinformed people who compare your child to their diabetic cat, who understand your frustration with misinformed people who offer up a cure they've read about somewhere online, who understand your fear when your child is vomiting and you can’t get her blood sugar up, who understand your lack of sleep, and who can celebrate the joy of a good night.  (Side note:  A support group has since started in the area where I used to live and they are enormously successful.)

I have attended the JDRF walks. I wanted to be a part of something big, and contribute to the research that may one day make my Type One daughter a Type None.  It also brought me a sense of inner peace, to walk with these hundreds of people who get it.  My mother owns a restaurant, and we have used that venue for the last two years for JDRF fundraising events that raised nearly $10,000.

The JDRF Type One Nation Summit.  Sue and I attended this event together. We listened to charismatic keynote speaker Brian Herrick, himself a type one since childhood, manager of Strategic Communications at JDRF, and a participant in part of the artificial pancreas program.  He spoke a little about the latest in research, most of which I am familiar with. He discussed at length his experience with the artificial pancreas program, which is NOT a cure, but a very promising program.  The artificial pancreas utilizes two key devices that are already available and widely used by individuals with type one diabetes: the insulin pump and the continuous glucose monitor (CGM). 

Presently, the insulin pump delivers insulin  based on settings preprogrammed by the user but requires the user to enter blood glucose values and total carbohydrates to be consumed (the pump then calculates an insulin “bolus” which must be entered by the user).  Basal insulin (the insulin required to keep blood sugars stable throughout the day) is programmed up to the hour and is automatically delivered every 3 minutes.   The CGM monitors blood glucose levels throughout the day and provides up-to-the-minute readings without the need for finger pricking. The artificial pancreas will combine these two devices and, based on a customized algorithm for each individual, will manage blood sugars for the user without the need for constant checking and bolusing. 

He mentioned Smart Insulin, currently under development and approaching clinical trials.  Smart Insulin, either in pill form or injectable, would be able to detect the body’s changing blood glucose levels and respond accordingly, eliminating the need for testing and bolusing and would not be affected by exercise, stress, or food (this is HUGE). It would offer continuous glucose control without the need for multiple injections (MDIs) or external devices (insulin pumps/CGMs). 

More exciting is the combined efforts of JDRF and ViaCyte – to introduce an encapsulated cell replacement therapy whereby a semi-permeable device is implanted containing the vital cells (which produce insulin) that will behave like the normal pancreatic islet cells and thus eradicate the need for constant testing and bolusing of insulin.  It will be protected from the autoimmune cells that originally attacked the beta cells and caused diabetes.  This is the one I am waiting for.  And clinical trials have already begun in San Diego. 

The rest of this conference entailed two breakout sessions – one with a renowned local nurse practitioner who discussed sports with diabetes, and the other a presentation about the psychological effects of diabetes on both the patient and the family, and how to cope.  We had an opportunity to speak to vendors, and I spoke briefly with a girl who had a diabetes alert dog (DAD) and also with the Animas Insulin Pump vendor, who showed me the latest pump with an integrated CGM.  On this pump screen is the up-to-the-minute blood sugar readings of the CGM, without the need to carry a separate device.  It was awesome.  

Otherwise, Sue and I mostly kept to ourselves, catching up on each other’s lives and discussing diabetes crap.  She had to leave early and I stayed for the final presentation by a woman who had been present all day long, quietly listening to the various presentations and mostly unnoticeable until she stood to speak.  Moira McCarthy Stanford walked up to the podium and introduced herself as the mother of a type one, and a sports writer who began living her dream long ago.  She shared pictures of herself, her daughter, and her family.  She talked about the journey, and about giving her daughter the chance to fly.  I don’t remember now all that she said, but her words were poignant and reached a deep part of me that I have hidden away, brought tears to my eyes, and inspired me.  My daughter, now 10, is just beginning to branch out on her own and I’m finding myself faced with those feelings about letting go, and the fear that accompanies her not being on my watch.  Moira’s words made me realize that my own strength, courage, and faith will lead us down that path that allows her “to fly.”

Diabetes often leaves us, as parents, feeling exhausted and scared, frustrated and angry, and sometimes sad.  That afternoon at the Type One Nation Summit – an event I attended for the technology updates – turned out to be an emotional and healing boost I didn’t realize I needed until I heard Moira speak.  I left feeling an inner peace and a sense of purpose I hadn’t expected.  After 8 years of “I’ve got this,” I realized how much it still matters to connect with others who get it.

Todd & I Do Something Together

On July 4^th, Todd and I decided to do something together that we’ve never done.  The kids were away at their dad’s, and we actually had a weekend to be ALONE!  We took a road trip to Ocean City, Maryland.  I haven’t been there since my last “family” vacation with my ex in 2010.  I haven’t been there without children since 1999.

I fell in love with OCMD (as we East-coasters fondly refer to it) on a trip there with a bunch of guy friends in 1992 (another post for another day).  I loved the white sandy beach just beyond the sand dunes, just wide enough to avoid being on top of strangers but not so wide that you couldn’t see the ocean until you’d walked a mile (Wildwood, anyone?).  I loved the atmosphere – safe, friendly, clean.  I loved the bus – yes, the BUS – that you could ride all day for a buck – especially good for bar-hopping.  I loved the bars, especially the now world-famous Seacrets.  I loved the big pink hotel that towered over us on the beach… deciding that one day I would stay there (and I did – every year I went back).

Todd used to go there every year, including that first year I went.  He was there the week I was.  He was in Seacrets that week too.  But alas, the universe had decided we weren’t ready to reconnect then, I suppose.  I don’t know why the hell not – we were both single and both looking for that “one.”  Sigh.

So, we drove to Ocean City.  There was the serious threat of rain in our area for the day, and the weather forecast for the beach two hours away had rain expected only in the evening.  We drove along old country roads and saw some beautiful places to visit another day… and then jumped on the highway.  We missed the exit for the first bridge and ended up coming in on the lower end, which is really no big deal… except, we were in a two-lane line of cars for forty five minutes to cross that bridge into Ocean City. The traffic on the island was ridiculous, and finding parking was beyond ridiculous. We decided to stop at a popular restaurant – which, by the way, had undergone an amazing transformation from a little crab shack with picnic tables to a pretty, 2-story restaurant with a rooftop bar and dining area. 

Afterward, we walked to the beach and took our first stroll together on the sand, and tested the water.  We drove up to Fischer’s Popcorn and bought a huge bucket of caramel corn.  We finally found parking in the municipal lot by the library, and walked a mile or so until we caught the bus. 

Ah, the bus.  It was a terrific idea when we were young 20-somethings, to get around the town without driving.  A bit different when you’re over 40 just trying to get down to the boardwalk and it’s packed wall-to-wall with people in all manner of dress and disposition.  Two older women got on right after we did with their granddaughter – she was about 4 – and, this is her first bus ride!  Say hello to Mr. Bus Driver! Hi, Mr. Bus Driver!  More people filled the bus, including this group of shirtless young men, normally no big deal unless one of them is literally standing over your seat and you’re this close to his tattoos.

The boardwalk – though not nearly as colorful as Wildwood on a Saturday night – was full of excitement.  It has changed a bit.  There is now a paved area on the beach side of the boardwalk, presumably for the tram, and we noted that there appears to be no smoking.  Well, except for this one time – I looked at Todd and said, you smell that?  I didn’t know there were skunks at the beach. 

The Christian Ministry sand sculptures are still there.  There’s something so beautiful about these, the intricacy and the message, at once both enduring and ephemeral.  And the humor of its juxtaposition with a young gangsta just yards away – with his pants impossibly clinging to his knees – was not lost on me.  I don’t exactly live under a rock, but I had no idea this was still a thing.  I need to get out more. 

We walked a bit further on and then decided to head north to Seacrets.

Ah, Seacrets.  This was the coolest place I had ever seen when I was 23.  An open air restaurant/club under thatched roofs full of palm trees the owner had flown in from warmer climates strictly for the summer season, sand floors, outdoor bars reminiscent of old Jamaican bars, illuminated at night by strings of colored lights that barely brought you out of the darkness, Reggae music drifting over the breeze coming off the bay.  Back then, there were huge round rafts on the bay you could wade out to, and waitresses would bring you drinks.  At night it was crowded with people drinking rum runners and pina coladas and scoping each other out, and so dark it was easy to lose your friends if anyone wandered off.

Today, the lines are no shorter to get in but you have to pass through security just a step below FBI clearance.  There are metal detectors and huge bouncers directing the lines and checking IDs and searching bags, and booths where you pay your cover charge and get your hand stamped.  I carry a wine key with me in my purse, and I was worried they wouldn’t let me in with it.  They didn’t see it, and barely searched me anyway – probably because I’m a middle-aged woman (Gasp! No!)  Even the bouncer didn’t card me – as I approached I gave him a look like, really? and he just waved me past. 

Inside, I noticed how the outdoor bars appeared to be enclosed – in fact, the entire place had the feel of being under lock down, the open air feel having given way to breezeless and stuffy recycled indoor air.  I didn't see any rafts, but then, I never did see the bay.  The bathrooms are still the same, and I found myself volleying for a sink to wash my hands as one girl (I can do this – I’m a hair stylist) was trying to pull a knotted wad of weave out of this nearly 6 foot tall blonde’s hair (Oh my God, I love you), and knotted girl’s much smaller, much drunker friend was supervising the delicate procedure (it’s going to be alright, it’s okay, we’re gonna get it out, you’re gonna be okay) from the position of the sink I needed to use, swaying in an unnerving way with a beer in her hand. 

Todd and I grabbed a beer and decided to go shop – which is the real reason I wanted to go – I wanted a t-shirt.  We bought some shirts, including one celebrating 27 years (TWENTY SEVEN YEARS!) in business.  Lord, I’m old.  We navigated around the bars in an attempt to see the bay and find a true breeze, and ended up standing next to a group of guys who were watching drunk girl dancing by herself just a couple of yards away.  She made eyes at one of them and weaved her way over.  The nature of the conversation is now lost to my memory, but it still makes me sniggle. 

We left soon after, stopping at a Candy Kitchen for salt water taffy and peanut butter fudge, and stood out on the street and watched fireworks.  Pretty spectacular day.  We walked 8 miles, ate dinner outside under an umbrella, dipped our toes in the ocean, drank beer, held hands, bought Fischer’s popcorn and peanut butter fudge, saw a skinny young black kid with his entire upper body tattooed and a mint-colored top knot (which the boys on the bus referred to as a Swiffer mop), saw fireworks, and visited Seacrets for probably the last time. 

The best part?  No whining, demanding, complaining kids. 

But, that’s coming.

What I Did On My Summer Vacation - Weeks 4 & 5

Somehow I’ve managed to confuse myself and we are actually in week 5 now.  I wrote during week 3 for my previous Summer Vacation post, but actually had much left to experience after Sunday’s Applebee’s Flapjack Fundraiser for cheer before calling it over. 

What I did when I wasn’t here:

Woke up at 7 on a Sunday to deliver my little cheerleader to stand outside with pompoms and “cheer” guests through the front door.  Because every good parent knows how to take advantage of what looks like an opportunity, Todd and I made this a “breakfast date,” which was interrupted no less than 46 times in an hour and a half by little cheerleaders asking if we needed more coffee, more juice, anything…

Went to Home Depot (conveniently located next to Applebee’s) and purchased 6 bags of black mulch and $100 worth of plants to drop in our front garden, and spent the rest of the day weeding, planting, and mulching.  It’s still not ready for Martha Stewart, but the neighborhood cats seem to be very pleased with the mulch.

Practiced my patience skills by arguing with Ava about healthy eating and why ice cream is not an everyday snack EVERYTHING, preparing dinners that meet all the dietary requirements of 5 differing palates, repeating my mantra that fruits and vegetables are the tickets required to purchase junk food, and explaining to Owen that I’m not buying a weight bench just because he’s off from practice for a week and it isn’t in the budget right now anyway.

Visited CHOP for Ava’s 3 month endo check-in where we learned her A1c has gone up significantly since last time, which is no surprise given the hell ride we’ve recently been on with high numbers.  These visits are always stressful, especially when you’re in the midst of making all the necessary changes and the blood sugars haven’t yet stabilized.  We have a fantastic NP – she’s kind and smart and not judgmental, but as Mom I always, always feel like I’m failing when my daughter’s blood sugars aren’t “perfect.” This is partly normal, and partly a result of something else – something for another post.

Finished Orange is the New Black season 3 and finally did something I’ve wanted to do for a long time.  Yeah, before you get any ideas – I started Game of Thrones.  I only finished the first season, and I am disappointed in the “everybody dies” theme (as my friends stated with bit of perplexing glee) but the end f*#%ing ROCKED.

Visited a longtime friend and watched my 14-year-old son get uncomfortable every time her almost 2-year-old wanted to breastfeed. This possibility hadn’t occurred to me and left me sniggling to myself. I had forgotten those days when they would want to breastfeed for 2 seconds, then get down and run around for 5 minutes, and then want to breastfeed again for 2 seconds, and then get down and run around again. It made my nipples hurt just watching.

Got my first speeding ticket in 28 years.  Seriously.  In PA.  For those who know, there’s this stretch of Rt. 113 in Lionville where the speed limit drops from 45 m.p.h. to 35 m.p.h.  Freaking nobody I’ve ever seen obeys this.  I saw the flashing lights, and I changed lanes to get out of his way until I realized it was my lucky day. He explained that people think that it’s 35 because of the schools, but really it’s because it’s a residential area with a lot of driveways.  I completely understood because I lived on a busy road before I moved to Maryland, where the speed limit was 40 and absolutely not one single driver drove under 55, and there were no police monitoring this.  None.  And now I’m getting ticketed for speeding on a busy road where there are many residential driveways.  This irony is not lost on me. As we're pulling away, Owen looks at the ticket and says, wow,$138.  That's more than the weight bench cost.

Attended a 4-year-old's birthday party and relished it child-free with a beer and the best hot dog ever... and finished the day at a neighbor's picnic.

Tried to write something that didn’t suck.  This is really, really hard to do when you’re trying to do this in the kitchen – which is really stupid considering it is the hub of food, loud voices, animals grazing, and general melee. 

Did something with Todd I haven’t done in 17 years. 

Distractions, Debacles, and a Date with Usher

Yesterday I had to leave the house at 5:30 to pick the kids up, and by the time I got home I was ready to go back to bed.  I curled up with my phone and read the newest post on a blog I follow.  She is a 40-something woman on a voyage through some issues I can definitely relate to, and some I would were I not happily remarried.  Some of her posts are racy and definitely for mature audiences only.  Yesterday’s post more than fit the bill. 

I read the post, perused a few emails, and quickly fell asleep.  I fell into a string of bizarre dreams, where my mom and I and Ava were in some huge mall-like venue with a concert going on, and I desperately needed a bathroom.  That was short-lived, and thankfully we never found a bathroom since with my childbirth-weakened bladder would have awakened me in a most uncomfortable way.

In the bizarre way that dreams segue into others, I soon found myself on a date with Usher.  He was driving me around in this mall complex in his fancy car (I was inside it and have no idea what it was – but for heaven’s sake, it had to be an expensive sports car) and I kept trying to convince him that I needed to change my dress and he was having none of it.  I have no idea how any of this is connected to a blog about sex in the afternoon.

I’ve been wasting away on the internet, trying not to get sucked into all the social media clusterf*cks out there and it’s getting damn hard.  It started with the Supreme Court’s (aka SCOTUS – which to me looks at first glance an awful lot like scrotus – which I find hilariously funny and questionable) decision on gay marriage.  I have – and have had – many, many gay friends and this just seems like a no-brainer to me.  Let’s just say I have many friends on Facebook too, who have expressed their opinions on the subject and thankfully no one I know was opposing.  Except one friend’s post about acceptance was rewarded by a comment about God’s anger and how “Christians are mad because they like to save the world from God’s anger.”  He even referenced Jesus, Noah, and Lot, with floods and fireballs. It put me on edge, that anyone could see God as anything but Love.  I think heaven must be a dreadfully underpopulated place if no one but obedient Christians is allowed inside.  Not trying to start a war on religious principles here – so please take your picket signs and move on peacefully.  I was raised to accept all people and no amount of Bible thumping is going to change me.  I am still a child of God.

Moving on.  The Confederate flag debacle has gone batshit crazy as stores are ripping anything with its image off their shelves and I was fine to watch quietly from a distance until TV Land took reruns of The Dukes of Hazzard off the air because the General Lee had a confederate flag on it.  That is IT!  Take away Gone With the Wind and lock it in a museum for its “historical” value in film?  Okay.  Whatever.  But NOW they’re f*cking with Bo Duke, and my 11-year-old self just threw down her soda and her bag of chips.

This made me angrier than a skunk trapped in a yard full of dogs, angrier than the CrossFit CEO tweeting a pic of a Coca-Cola bottle with the caption, Open Diabetes.  We live in a country that’s become so sensitive to every. Single. Perceived. Outrage.  What will be left of us when we take away everything that upsets any one? 

I try to stay off the soap box because I don’t like to stir the pot.  I hate conflict.  Really, I try not to comment or post things that will provoke a FB riot.  ‘Cause the last time I posted what I thought was a relatively innocuous rant about cupcakes in school, it incited a heated back-and-forth between two friends who didn’t know each other, which culminated into mutual blocking and privately apologizing to me.  A third friend commented that he enjoyed following me but keeps silent most of the time because he doesn’t like those types of exchanges.  Which made me sad, but I understood.  To think I could lose a friend over cupcakes?!  Really.  What is the world coming to??

So, I’ve been lurking periodically on Facebook and trying to stay calm while the parents in one online group are losing their minds over Greg Glassman and as his legion of dunces trainers continue to inflame Type 1 diabetics across the nation.  Get some knowledge, they shout!  Get your facts straight, Nick Jonas tweeted.  You have no idea what it’s like for our children, they cried!  At some point it dawned on me that nothing any of us can say will fix stupid.  And CrossFit gets a shitload of publicity.  Maybe PWD won’t go there, but the masses who really don’t understand diabetes or care about the confusion are still going to go.  Nice try, DOC, but you can’t shut them down for being stupid.  Just look at our government.

Meanwhile, I have had to look away while the wild-eyed moms regurgitate CrossFit’s statements about soda being the root of all evil (and I honestly have no idea where Coca-Cola is in all this) and the best blood pressure bomb of all:  the suggestion that our diets during pregnancy caused our children’s Type 1 diabetes.  I have two choices: join the rabid crowd or laugh out loud.  The latter is way more fun and requires a LOT less alcohol, and so I joined Twitter just when the temperatures started to rise.  I swore I’d never do it, but I jumped off the boat and right into the uncertain waters of verbal diarrhea. Like I need another distraction. 

And so I leave you to social media while I focus my time on cleaning the house and asking why there’s a cucumber seed on the bathroom floor… because time marches on and so do the ants under my front door.  Carry on.