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Holidays and Diabetes: Fun-Free Pie.

Last year, Abby and I took to the computer for a frank, serious discussion about the holidays and diabetes.  But then it digressed into a chat about how friends and relatives handle diabetes, what are our favorite holiday desserts, and the influx of fun-free pie (no recipe, but there is one for the pumpkin roll, which is mentioned several times throughout).

What recipes are your favorite for holidays indulgences?  And do you put ketchup on your mashed potatoes?

Looking Back: Santabetes.

‘Tis the season for giving Santa too much of the credit.  This morning, I’m looking back at a post from 2010 about my mental Santabetes.

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[Note:  This post contains spoilers.  If  you believe happily in the story of Santa, skip down to where it says “Diabetes is like Santa Claus.”]

My husband and I share a philosophy on Santa Claus.

Santa gets too much credit.  Why should Santa get all the glory for the gifts that show up underneath the Christmas tree on Christmas morning?  Mom and Dad work their tails off to provide a fun and comfortable life for our child, and to have the fun thunder (funder?) stolen by Santa Claus is unfair.  “Thank you, Santa, for the Barbie and the Rockers van!”  I shouted as a kid, not realizing that Mom and Dad put in some extra hours (and spent half the night assembling the stupid thing) to get that Rocker Van under our Christmas tree.

So BSparl will be fed the Santa story, but she’ll also understand that her Christmas gifts come mostly from her parents, and not from a fictional cookie thief who shimmies down the chimney.  Santa doesn’t work as hard as we do, so he shouldn’t get all the credit.

Diabetes is like Santa Claus.  (Welcome back!)  Only in this case, it SHOULD be the one given most of the credit for certain things.  And I shouldn’t give myself so much of the blame and guilt.  I have a tendency to look at a blood sugar reading and instantly blame myself for it.

“Oh, 236 mg/dl.  Great.  What did I do?”  And then I start musing about what I may have eaten or if I under-bolused.  Same guilt for a low.  Same reaction for any number that may be deemed “bad.”

Only it’s not my fault.  Even if I did overeat or over-bolus.  It’s the fault of diabetes.  I can’t assume all the blame for the effects of this disease because there is plenty that is out of my control.  I can count carbs and test often and make use of all the technology and medical advancements available to me, but when things go awry, I can’t sit around and blame myself.

Last week, I was talking to some parents about “good” and “bad” diabetes numbers.  And I hate nothing more than assigning such adjectives to a moving target like a blood sugar number.  236 mg/dl isn’t “bad.”  It’s out of range.  100 mg/dl isn’t “good,” but just in range.

Holidays and diabetes - Santabetes?

It took me a very, very long time to not see my meter results as something I should feel badly about.  Growing up with diabetes, everything was tagged with either “good” or “bad.”  But I can’t carry that kind of guilt.  By blaming diabetes for these fluctuations, I’m able to remove myself from the guilt cycle, and move on faster from an out of range number.   Diabetes is to blame for my body’s inability to maintain a consistent blood sugar.  This kind of “Santabetes” viewpoint is not an excuse for me to slack off, but the detachment makes it easier to bounce back from a tougher diabetes day.  I can’t blame myself for everything – that’s not productive or mentally healthy.  My job is to do my absolute best to keep things in range with the help of the tools and education I have at my disposal.

And, like Santa Claus, diabetes isn’t going to get all the credit for the good stuff, too.  When my A1C was at the Nice Healthy Baby Range, I didn’t give the nod to diabetes for being easy on me.  It was the result of my hard work against a pain in the ass disease.  Go ahead and take all the credit for the tough stuff, Diabetes.  I’m not owning that part of it.  I’m just going to keep looking ahead and taking one day of diabetes at a time.

… and mentally prepare myself for the Christmases to come, when I’ll be up all night assembling whatever goofy gift is on my daughter’s list.  😉

Guest Post: Someone Who Understands.

Part of what drew me to the idea of creating a diabetes blog was the search for, and the hope of finding, people who understood.  Google was a dark abyss of bad news and depressing statistics; what I needed was to connect with others who were living life, with diabetes along for the ride.  That same connection still feels necessary, now almost a decade later.  This morning, fellow PWD Heather Gabel has offered to guest post about the search for and the becoming of Someone Who Understands.

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Holidays are meant to bring family, friends, and loved ones together. It is the nature of holidays to feel warm feelings, give hugs and thanks, and to eat all the treats you can.

I would be fibbing if I said the ‘Holiday Spirit’ didn’t consume me each year. I start preparing for December 25th on November 28th. The giving and the hugging and the loving fills me with a sort of joy that I don’t find as readily accessible in other times of the year.  However, ever since diagnosis, which for me was at 11, there has always been something missing. One piece of the puzzle that until last year I could not seem to find.

Pardon this cheesy attempt to convey the overall sentiment, but to feel complete during the holidays, all I want for Christmas is … Someone Who Understands.

I want someone who knows what it is like to wake up in the morning on Christmas and do diabetes things before joining the family. I want to talk about what it feels like to miss those moments of laughter coming from where you would have been if diabetes didn’t take those minutes away.  I want someone who has been through the “Should you be eating that?” and that saddened glare when mom sees that you have stolen one of Santa’s cookies.

Connecting with someone who understands is so powerful during the holidays, when what makes you different feels isolating and you really get the FOMO (fear of missing out) going on.

Last year I stumbled upon something that filled that gap. What was it you ask? Why, the DOC [Diabetes Online Community] of course.

This outstanding community of individuals, via Twitter, Facebook, blogs, TuDiabetes, Glu, Children with Diabetes, or other social networking site, has connected me to a SWU (Someone Who Understands). And, to even more capture the holiday spirit,  the DOC allows me to be someone else’s SWU.

The DOC is a birthplace of friendship. Year after year, you get to know your DOC friends more and more.

I was talking with Mike Lawson about this recently and he described something I hadn’t really addressed before. He said that before he started going to conferences and meet ups, it felt like he had two distinct groups of ‘friends’. His “friend-friends” being those he physically spent time with and his “online-friends” being those in the DOC. When he started going to conferences and meeting face to face with the people he knew so well online, the groups began to merge. The lines between them became fuzzy and overlapping.

As a PWD (person with diabetes), and a PWD who has now attended four diabetes conferences, I couldn’t agree with Mike Lawson more.

Meeting people you know well through online platforms feels strange and almost backwards. You know their secrets, their fears, their hopes and dreams, and then you meet them and begin small talk because you don’t know much about their home life, their job, responsibilities, their family.

Relationships develop online, but they seal in person.

As a PWD who is 23, the holiday gap is not entirely filled by the DOC, and this is why: finding a Someone Who Understands who is close to my age is incredibly difficult online.

I don’t always feel a need to talk to someone in my exact same boat, usually if you have diabetes that is sharing waters and thus close enough. But there are times when I want to connect with a PWD who is wondering what to do after college, how to land a entry level job that offers good enough insurance, how to wear a bikini with both CGM and pump sites hooked in, etc.

There are programs out there bringing together 20-somethings with diabetes. There is College Diabetes Network, Friends For Life, Students with Diabetes, Facebook groups such as Females w/ Diabetes, Diabesties, etc. There are mentor programs like Insulliance via Beta Connect and fundraising young adult groups such as JDRF YLC chapters. BUT, there still seems to be something lacking.

It is a feeling of solidarity.  Where is a core group of PWD’s going through life post college?  Where do we meet up? How do we stay in contact?  I am certain that there are groups of friends with diabetes in the 20 something range who would completely disagree with me. You interact constantly and feel supported by your peers. That is wonderful! Where do I sign up?

If this is your circumstance, I urge you to grow your group.  Find ways to connect with others who are blogging and tweeting and Facebooking. Make a blog, yourself, and invite others your age to read it.  (A great example of someone who recently started this process is Walt. He is a 20-something who has yet to meet another PWD in person. He couldn’t find the voice, so he started it.)

During this holiday season, the DOC could become greater, more powerful. We could reach out, and welcome floaters and lurkers and plan to meet or attend the same conferences. We could inspire them to begin sharing their vital voice.  It could be a merrier year in the DOC, if we collaborated and sought out a 20-something group of advocates, writers, athletes, innovators, students, shakers, and makers.

I feel certain that there is complete openness for something like this to develop within the DOC. We just have to begin moving in that direction.  (Hey veterans, any ideas of how to begin?)

If you are a 20-something and write a blog, leave your URL in a comment below and share if you are interested in forming a solidarity group. How can we better support each other?  Moving forward through life’s many stages would feel more safe if we could all experience it together.

If you are interested in reading some diabetes blog’s by 20 somethings:

Walt’s Blog
Courtney’s Blog
Heather’s Blog
Elizabeth’s Blog
Jen’s Blog

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After graduating from UC Berkeley with a degree in East Asian religion and philosophy, Heather Gabel joined the Diabetes Hands Foundation team in fall 2012. While working there, she has become greatly involved in the diabetes community, both online and off. Heather founded an organization called Beta Connect that inspires positive language practices in people with diabetes through the implementation of mentorship programs at hospitals and healthcare centers.

And please, if you’re a 20something blogger living with diabetes and you want to find, or be, that Someone Who Understands, please leave a link to your blog in the comments.  Make the search easier!

Power of Patient Communities.

At the end of November, I had the opportunity to contribute an article to Pharmaphorum, which is a UK-based publication with the mission to “connect healthcare thought leaders to support the pharma industry in delivering innovation.”  Thanks to the thoughtful responses from Bob Pederson, Shannon Marengo, Laura Gibson, and Melanie Bunda, I was able to highlight some of the benefits of the DOC connections.  Here’s that article in its entirety (with links and photo added by me), originally published on Pharmaphorum:

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Twenty-seven years ago, when I was diagnosed with type 1 diabetes at the age of seven, I was immediately handed a syringe and a vial of insulin and instructed on the how and why of injecting myself with the life-saving hormone. I tested the glucose level in my urine using an at-home urinalysis kit resembling an Easter egg coloring kit. It wasn’t until about a month later that my family was given an at-home glucose monitoring machine, helping us match insulin needs to blood sugar numbers. Semi-dark ages of diabetes.

Support and community were also somewhat remedial, and seemingly limited to where my parents’ car could drive us. For a few summers after my diagnosis, I attended a special summer camp specifically fashioned for young girls with type 1 diabetes. The once-lonely ritual of taking my morning insulin became something I did, without shame or bias, alongside my peers. Knowing I wasn’t alone made diabetes feel less isolating and scary, and instead something I felt emotionally equipped to handle.

But I eventually aged out of diabetes camp and went through my high school and college experiences without access to diabetes-centric peer support. Involved and supportive friends and family members were amazing, but there was still a gap in my care team, one that could only be filled by like-minded and like-pancreased peers. My care, both physically and emotionally, was less-than-optimal for several years.

Now, twenty-seven years after my diabetes diagnosis, I am still treating my diabetes with the same sorts of technology: insulin, glucose meter, and urinalysis. What has changed, by leaps and bounds, is the psychosocial support available to people living with diabetes, and for those caring for a loved one with diabetes. The Internet has changed that landscape of support, allowing people with diabetes to connect from two doors down or seven time zones away, thanks to social media and a willingness to disclose their diabetes to the web.

What are patients getting out of online connections? I hear this question being raised by researchers and healthcare professionals, and I am frustrated by the lack of data that proves the positive impact of patients connecting with other patients online. Few studies have been done around the psychosocial impact of online support for people with diabetes, but the ones that have been conducted show improved health outcomes.

And I shake my head in disbelief, because aren’t these healthcare professionals hearing what I’m hearing from my peers? I started blogging at Six Until Me almost nine years ago about day-to-day life with type 1 diabetes, writing in pursuit of finding others who understood and who were living normal lives, even after their diagnosis. I found so many people just like me, sharing their struggles and successes without shame or judgment. And in the last nine years, I’ve collected countless, truly countless, emails from people recounting their improved care, improved outlook, and improved lives as a result of connecting with the diabetes online community [DOC].

“[Once I found the diabetes online community,] I was empowered to take control of my diabetes. I had hope. My A1C dropped within a few endocrinologist appointments. It dropped because the number of times I tested my blood sugar per day rose from less than once to more than six. I started on a continuous glucose monitor. I tweaked my basal rates. I learned to combo bolus the hell out of pizza. I learned a whole new language with which to bring my diabetes up with my friends and coworkers and boyfriend. I learned that I had a future. The DOC taught me these strategies and more for seamlessly incorporating diabetes in with the rest of my life and the impact was huge,” wrote Melanie Bunda, diagnosed with type 1 diabetes at the age of six. “Today my A1C is under 7%. I’m in a relationship with someone who partners in my diabetes care and we are working toward a future that will hopefully include children. This is the power of the diabetes online community.”

“Before finding the DOC I was basically living status quo – and frankly didn’t know nearly what I should’ve known after all those years. But when I was diagnosed [with type 1 diabetes] at 17, I was too old for my mom to manage it for me and too young to really manage it for myself. I’ve been armed with so much information these last almost two years and am in such better control. And it helps having a fully loaded support group just a click away,” said Shannon Merango.

Bob Pederson was diagnosed with type 2 diabetes five years ago, and has been involved with the DOC for the last few years. “Initially, I was most inspired by our amateur athletes like Jeff Mather [amateur marathoner and cyclist]. I figured that while I could never duplicate their achievements, I could maybe duplicate their dedication. I can’t tell you how much help the little bits of encouragement, support, and applause I get on Facebook mean to me. Starting a few months ago, I started having the most sustained success at healthier living. I have ever had. I am choosing not to publicize numbers, but I have thus far lost [significant amount of weight]. The DOC has been critical in that success.”

Some of the stories involve data, like weight loss and A1C improvement, but the emotional support can be hard to quantify. How do you measure the concept of “feeling better?” Or confidence?

”I think the thing that the DOC has helped with most is confidence going into a potential pregnancy with diabetes,” said Laura Gibson, diagnosed with type 1 diabetes at the age of 18, now 32 years old. “A couple of years ago, my then fiancé and I always thought, ‘We’ll adopt,’ when discussing having kids. This always made me a little sad as I want to experience pregnancy, childbirth, and breastfeeding. Granted, I think adoption is wonderful and will always be an option for us, but selfishly, I want to [experience pregnancy]. Finding blogs [that discussed pregnancy and pre-existing diabetes] really made me think, ‘I think I can do this!’ It’s inspired me to get my diabetes under better control and really excites me to – hopefully – experience pregnancy in the next year or so.”

Many of the stories I hear today aren’t part of a study, nor are they being presented at medical meetings or written up in peer-reviewed journals. But online patient communities of all kinds are supporting patients and empowering them to take control of their health. These anecdotes will become part of the eventual proof that peer-to-peer support can contribute to an improved emotional state and improved health outcomes, giving people with diabetes hope that there is a healthy, fulfilling life to be found after diagnosis.

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Gluten-Free Your Face: Nutella Cake.

Today is Cookie Day, as my mother is coming over and she, Birdy, and I are going to bake the hell out of some cookies.  (My mission is to make these and have them end up delicious.)  In keeping with the baking theme, and in time for the holiday gluttonous rush, I wanted to re-share a recipe for gluten-free Nutella and chocolate cake, because it was mighty tasty.

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In keeping with the “all I can cook are things I shouldn’t eat” theme, I made a flourless chocolate cake with Nutella for my mother-in-law’s birthday party.  Chocolate-y goodness AND gluten-free!

The recipe is from this fantastic site that has wonderful editorial and pictures, but I’ll be damned if the ingredients aren’t measured in grams, making my almost-comatose inner mathematician completely unresponsive.  But I did it, and if I can do it, so can you.
Flourless chocolate cake ... with Nutella.  The only thing missing is YOUR FORK.
Original recipe found here.

Ingredients (and I apologize for the grams thing.  Just use a converter.  Or guess.)

200g unsalted butter, cut into chunks
100g dark chocolate
200g Nutella
100g white sugar
6 eggs, separated
1 t. instant coffee or espresso powder

  • Preheat the oven to 350 degrees.
  • Retrieve the 9″ springform pan from the Birdy, who is running around the kitchen, banging on it like it’s a gong.  Dust the pan with a little bit of cocoa powder.
  • Take the sticks of butter and chop them into chunks.  Mix the butter and the chocolate chips on low heat on the stove until it’s all melty and wonderful, but don’t let it burn.  Even if the cat is picking at the frigging screen door.  Ignore the cat.  Stir the chocolate.
  • Remove the chocolate and butter from the burner and mix in the awesomesauce known as Nutella.  Once that mixture is fully blended, stir in the instant coffee and put aside.
  • Next, grab two bowls and separate six eggs.  If you have an egg separator, you’re awesome.  If you’re like me and you have to use the two sides of the broken shell to shuffle the yolk and the whites back and forth until they let each other go, I feel your pain.
  • In the bowl with the eggs yolks, add the granulated sugar and beat it senselessly. Then mix the chocolate/Nutella/butter together with the egg yolks.
  • In the bowl with the egg whites, use a handheld mixer to beat these things until they start to shape themselves into little, snowy peaks.  It looks pretty.
  • Toss the egg whites into the rest of the mixture and stir until it’s well-blended.
  • Pour the mixture into the springform pan and stick it in the oven.  The recipe from the Misadventures in Italy site says to cook the cake for about 20 minutes, until the center is cooked, but a little “jiggly.”  I needed to cook my cake for about 28 minutes, but that may have been because my kitchen is trying to thwart me in all ways.
  • Using your oven mitt that you drew eyes on a few minutes earlier, remove the pan from the oven.
  • Let the cake cool, fool, for about 20 minutes.  Don’t be alarmed if it falls a little.  It will still taste terrific.
  • Dust with powdered sugar and smash it into your face, because it tastes that good.

Anything made with Nutella works for me.  But beware – this stuff is like insulin’s Kryptonite.  … or maybe that’s just diabetes.


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