What I'm Reading.

The DOC (and beyooooond!) has shared some really thoughtful and entertaining writing that I've enjoyed
this week, and I wanted to point you to a few places:

Sara at Moments of Wonderful reflects not so much on the "Miss Manners" controversy itself, but how some of our community chose to respond to it. "Last week the diabetes online community helped raise over $26,000 for people who are dying without access to insulin and education. This week, the diabetes online community told a 75 year old woman to 'eat' things and 'suck' things that I would not repeat in polite company or impolite company."

Another view on Miss Manners' advice comes from a fellow chronic disease patient advocate, Carly. She hits the nail on the head: "This is the sort of thinking that reinforces the stigma of illness – the more it is concealed the easier it becomes for people to (wrongly) assume it’s not a problem that warrants solving."

I've been binge-reading the blog The Sugars, penned by a "twenty-something" named Libby. This post talks about how she handled questions about her insulin pump while trying to snorkel ("come on guys, i’m not in any position to be answering questions right now, i’m pretending to be a navy seal going into a top – secret aquatic mission to save the world from mass destruction. or just like, focusing on not drowning once i get in"), and in this one she manages to both quote Drake and introduce a cool mini-series of (real life!) fitness stories from some fellow PWD young adults.

The site Faces of Diabetes is the creation of Edward, a PWD and photographer. In his words: "I made this project in hopes that you will be inspired and learn about how diabetes has affected other people's lives. Diabetes may seem rough when you don’t know anyone else that lives with it, but rest assured there are plenty of us out there…and we are going to show you!"

And lastly, Scott's review of Kerri's book, Balancing Diabetes, is so worth a read. I couldn't have said it any better myself, but I'll try at some point soon.

Happy Friday!

Diabetes Lifehacks.

One of the benefits of the DOC (diabetes online community) is that we get to share the tips and tricks that only a person really living with it would know, in an effort to make our diabetes management a little bit easier. It's group problem-solving at its finest: crowdsourced answers to common challenges.

To use another buzzword, a lifehack can be defined as an "uncommon solution to common problems", or "unusual ways of using everyday objects to make life easier".

Since Googling "diabetes lifehacks" didn't bring up much for me in the way of search results (although I did find this thread on TuDiabetes), I'm going to do what I can to fix that problem with this post.

(Important note: nothing here can be considered medical advice, and if you're unsure about something, check with your doctor first. Let's approach this as, "this is what I do" and not "this is what you should do". If you're sharing someone else's tip(s), please credit them!)

Here are some of the ones I'm aware of (and yeah, a lot of them are CGM and insulin pump-centric).

Wondering how to get Dexcom sensors to last longer? This is at least a two-part answer. The first part is getting the receiver to take readings again: you can either find "stop sensor" in your menu, or wait until the receiver tells you that the 7-day period has expired (and it stops taking readings on its own). After that sensor has "stopped", go back to your menu and select "start stensor". After another two-hour period, you can calibrate (by entering two fingerstick results) and continue on, with the receiver believing you're using a fresh sensor, when it really is the one you were already wearing.

The second part has to do with the actual adhesive - it's likely not going to stay stuck to you for a full seven days on its own. Use a medical tape like Opsite Flexifix (a DOC favorite), IV3000, or Tegaderm. Find tips here, here and here on how others use this tape.

If you have trouble remembering how long you've had your Dexcom sensor on, or when the 7-day expiration will happen, write the date and time of your sensor insertion on the sensor's packaging and hang onto it (this way you keep the sensor's serial number on hand too, in case you'd need it for calling Dexcom about sensor issues), or take a picture of it with your iPhone or similar device (the date you took the photo will be saved that way).



If you're pumping with a t:slim and wrestle with keeping tubing and the pump upright during a prime sequence, kitchen cabinet knobs are your friend.

Changing the battery out of an Animas Ping insulin pump without using a coin can still happen if you're wearing a medical ID bracelet.

If you need to disguise an insulin pump/CGM receiver/tube of glucose tabs under a dress, try making your own garter using thigh-high hose, sew a pocket into the dress, or maybe sport some stretchy shorts underneath. In a pinch? Baby sock + safety pin = you can wear your pump just about anywhere on your person.

Can't hear your Dexcom alarms while you're sleeping? The ol' glass and coins trick may work.

Remembering to grab all of the right insulin pump cartridge/site change-out parts become easier when you use small Ziploc bags for the parts. Especially helpful if you'll need to do a change-out away from home and tend to forget parts (cough, me, all the time) - just grab one baggie and one vial of insulin and you'll be good to go.



If you're on MDI (multiple daily injections) and don't want to mix up insulins whose packaging may be similar, use something like colored duct or washi tape around the outside of the vial (or pen!) to distinguish them. (You can also use washi tape to dress up a glucose meter!)

(Speaking of true hacking... check out this Dexcom DIY set-up for monitoring someone in another room. Whoa.)

Need a small sharps container while you're traveling? An empty glucose tab jar or eye makeup remover wipes container packs nicely.

Empty test strip tubes are also a good place to stash the used test strips in your meter kit - use a sticker on the lid (or marker on the labeling) to tell them apart.

Infusion sites can be dressed up with the help of a little nail polish and creativity:

Images courtesy of Amy Dooley; D-Momma to Lauren

What are your favorite diabetes lifehacks? Please share them in the comments section!

In Your Pancreas.

I feel so lost, sometimes

Days pass, and this insulin fills my cart

When I want to exercise

I end up eating carbs

Every time I test, I go

"There must be a better way to know"

My low symptoms; will they return?

New devices I'll have to learn

They make a noise I try to hide

I struggle with how it feels on the inside

But I'm fine

Beta cells might 

Have all died

(But who's complete?)

I'll be fine

I see a closed loop, and a thousand researchers

(Cure in five?)

The resolution in these badass advocates

Okay, not fine

But I see the light and the heat

In these guys

No math, please, while we eat

We want to have the chance

To be complete in our eyes

I don't like to feel so much pain

Test strips, wasted - and this error 4 keeps beeping at me

I get so tired, working so hard for my survival

I wish for a time where I can just be alive

To my eyes

I can't believe

Over twenty five

Years with this... sheet

I see a better answer to Google searches

No disguise!

We share ourselves; all the low-carb lunches

(Or french fries)

We tweet it all, and we see

We're not alone; on the same team

It helps us feel more complete

The same team; the same team

The burden is no longer all mine

Not all mine, not all mine

Not all mine, not all mine

Medtronic Diabetes Advocate Forum: Leap Of Doom.

You may be aware that I have a history of throwing myself off of proverbial cliffs, hoping that our community will catch me. So far, I'd say that strategy has worked out pretty well.

Keeping that in mind, I have something to ask of you.

Something was ignited at the Diabetes Advocate Forum last week (#MedtronicDAF), and I don't think any of us are willing to let this fire reignited inside of us burn out. Nope, instead we're asking you to add your branches and kindling to the flames and let's get this thing so big and powerful that it amazes even us how far it reaches; so that no corner of our diabetes community goes without feeling its warmth wash over them.

“Here’s what T1D looks like in Haiti.” (photo of young girl) “This child died.” Heart just exploded. #MedtronicDAF
— Kim / Diabetes (@txtngmypancreas) January 11, 2014

Changing diabetes beings with us, and ends with us.

So here's what I'm asking of you: there is work to do, and this community - and me, specifically -  need you to be ready and willing to act. There will be many times this year that I'll be calling upon you for action, in many forms, and I'm asking you to be open to that. I'm asking you to help change the world with me, little bit by little bit.

(Whoooooa, there, big dreamer! It's a pretty big leap of faith to assume you can...)

Oh, hey, I'm glad you said that, because that's exactly what I want to emphasize.

One of the speakers we heard from was David Strasberg - son of Lee Strasberg, the infamous acting coach; he and his son both live with T1D - who coached us on "the art of asking". I'm completely paraphrasing here, but here's one of the things he said that keeps sticking in my brain:

"People call it a 'leap of faith', but that's not what it is at all. 'Faith' assumes that everything works out in the end - that's not real life. When you leap, everything is uncertain and where you'll land is impossible to see. It's more realistic to call it a 'Leap of Doom', and it's one of the hardest things to do."

I'm asking you ("you" is everyone - fellow PWDs, HCPs, advocacy organizations, device manufacturers, pharma, ALL OF YOU) to "leap of doom" with me this year, because doing what feels safe or certain isn't the same stuff that will enact change. I'm asking you to be open to chaos with me; to be bold; to raise your hand at the very moments it feels uncomfortable to do so. Change is scary, but that's exactly the feeling we need to thrust ourselves towards. The things in life that are most worth doing are usually the hardest.

"Imagine a world where industry and patients work together to help #pwd..."- Nancy Katz on taking steps forward, Medtronic #MedtronicDAF
— Medtronic Diabetes (@MDT_Diabetes) January 12, 2014

I'm asking you to use your resources and connections to further the work being done by diabetes advocates like myself. I'm motivated, willing, and over-the-top enthusiastic, but I can't do it alone. If you see value in what we're working towards, show us.

When we don't work together, it's easy to make excuses for why we don't succeed. #MedtronicDAF
— Mike Lawson Diabetes (@MrMikeLawson) January 12, 2014

I'm asking you to be part of "us". Let's Leap of Doom all over the place in 2014.


Disclosure reminder: Medtronic Diabetes and Bayer Health paid for expenses such as travel, lodging, and food during my attendance at their event. I was not paid for or asked to write about the event, and opinions are my own.

Expectations.

It began with a conversation on Facebook about the following quote on My Diabetes Secret:

"I publicly blame my lack of recent involvement in the DOC on my crazy schedule when in reality, I’m sick of feeling judged, alienated, and deserted by the group that’s supposed to support and encourage me and everyone else touched by diabetes."

I've noticed that this general sentiment cycles through our community every so often; a visible, vocal frustration concerning the dichotomy of our open, supportive reputation and the harsh reality that not everyone who approaches the community is welcomed with open arms. When we're really down, it can take a lot of the dwindling energy and motivation we have to actually reach out and say "Hey, I'm having a really hard time. Help.", and when those pleas go unanswered, we feel abandoned.

I also worry (a lot) that some of the "look at what I can accomplish with diabetes!" stuff does more harm than good; perhaps for some, it does more to discourage than inspire. For some who have reached their rock bottom, the bright lights are less illuminating and more blinding. The further you are from "okay", the more resentful and bitter you become of those who have achieved some semblance of it and your ears and eyes and heart shut out exactly everything that others want them to take in. When you're deep down in it, there is no suggestion or advice or solution or logic that can work. When diabetes, or life, or anything has drug you down and nailed you to the floor and made you so convinced that even your tiniest little effort will be futile because failure is your mode now and there's no hope left - what can anyone do for that person then?

It becomes difficult, again then, when we all come to the table with differing expectations and needs. Some of us find what we need in reading the words of others; for some a tumble down a YouTube vortex sets them right for awhile. Some of us need immediate responses; some of us require just one person to speak up and say they get it. Some of us need drama. Some of us need attention.

None of it's wrong, assuming we're being honest about our situation. The trouble lies in what we reasonably expect the role of others to be.

I'm not saying our community doesn't have assholes in it or people who embellish the truth (or just selectively tell it) or people who perhaps take themselves a bit too seriously. We have exactly those people, just like the rest of the world, because our diabetes community is a microcosm. Diabetes doesn't discriminate.

What I've been thinking about, moreso today than normal, is what our role might be for each other. We are no official community; there are no credentials required or tests passed or rules for membership - we are this living, evolving, semi-solid of an organism whose adhesive is some combination of circumstance and empathy, a call to both arms and duty. What keeps us together, and what I hope we remember in times of divisiveness, is sameness. We're all dealing with this same horrible thing. It may not always look or act the same, and we may not all react to it in the same way, but all of it is horrible.

So what can we do?

I don't know, but I can tell you what we can't do. We can't be hammers looking for nails. I think that's where we trip up - we don't have to "fix" everything that's wrong. Sometimes, things just have to be shitty. But if it's shitty out in the open, if we admit and share and yes, sometimes even bask in those feelings out in the open, that takes away the part of the burden that says "I'm a horrible person for thinking this. What is wrong with me? No one else is as messed up as I am."

What you can do is say, "Yes it is, and I'm right in it with you, and we're going to be not okay together."

And if those you open yourself to don't respond in the ways you'd hoped, remember that everyone is dealing with something, even if you can't see it, and the way they respond to you may not be a reflection of you, per se, but a comment on how overwhelmed they already are. Most of us aren't doctors and haven't received any kind of training in how to "help" in these kinds of situations, but we are all human and can offer empathy.

But... empathy requires energy, and if you've already spent yours just keeping yourself afloat, there's not going to be much to spare for others. We can't be everything for everyone and expect to have anything left for ourselves at the end of the day. (Spoons, and all that.)

Joslin Blog Project: Talking.

I'm honored to be participating in Joslin Diabetes Center's Blog Project this month, alongside a handful of other dedicated and passionate diabetes advocates. We'll each be writing four posts that detail our personal journey with diabetes, in the hopes that we can raise some awareness along with some money. Our goal is to raise $5,000, as a team, for the Joslin High Hopes Fund through this blog project.

Our prompt for this week is: Why/how did you get into blogging? What have been the best and worst parts of doing so?

I've shared my "how I found the online community" story before - so there's the beginning of how. But why? My first entry here explained how I hoped that adding my voice to the diabetes blogging community would bring "more awareness to the cause, and some comfort, information (and entertainment?) to those affected by diabetes". I think all of those still ring very true for me - I'm here to share my story, through whatever medium seems to fit best. I'm here because I know that feeling alone is one of the most toxic parts of life with diabetes. I'm here because I wish someone like me had been around when I was going through my lowest points.

My very favorite moments of being a diabetes advocate are the ones that connect us on emotional and personal levels: the swell of cumulative encouragement when someone needs it, the realizations and connections that lead someone to feeling the very essence of community in their heart, and the forming of friendships that sometimes begin with just a tweet and grow into the deepest sorts of love and support.

image credit: Wendy at Candy Hearts

When we give, we are beautiful. When we show love, we are true.

My less favorite parts center around the things I shouldn't care about, but sometimes do: Is this my last good idea? What on earth am I going to write about today? Am I tweeting too much? How can it take me five days to respond to an email sometimes? Why am I literally losing sleep so that I can stay up to write something that no one comments on? Why is no one commenting? Why do I care that no one is commenting? Was I off base? Do I care? Should I care? Should I really be using every vacation day from my "real job" to go to conferences? And then, shouldn't I just be grateful I have these opportunities and who needs a real vacation anyway? Is it worth the sacrifices I make in my "real life" to continue being this heavily involved in advocacy? And what on earth am I going to write about today?

The truth is that I pour my energy, time, and heart into what I do as a diabetes advocate because it feels right to do so. There are times I can help someone laugh at something so cruel and punishing as diabetes - I love being able to do that. There are times I'm able to really connect with someone; to perhaps put words to something they've been feeling but haven't vocalized - I love that, too. There are times that someone who feels as I once have finds me and says, "I thought it was just me".

What I love most is being even a small part of that realization in others. It's never just you.

If you would like to make a donation toward our $5,000 blog project goal for the Joslin Diabetes Center, you may do so here.

Lessons Of Perseverance.

Nothing worthwhile comes easily. Work, continuous work and hard work, 

is the only way to accomplish results that last. 

- Hamilton Holt

(ONE OF MANY SIZES OF) SKINNY JEANS FINALLY FIT YOU GUYS.

Confidence comes not from always being right, but from not fearing to be wrong.

- Peter T. McIntyre

Nothing builds self-esteem and self-confidence like accomplishment.

- Thomas Carlyle

A life of rich fulfillment comes to those who are also thankful for the setbacks.

- Author Unknown

You need to be aware of what others are doing, applaud their efforts, acknowledge their successes, and encourage them in their pursuits. When we all help one another, everybody wins. 

- Jim Stovall

Why do we fall, sir? So that we might learn to pick ourselves up.

- Alfred Pennyworth

When the world says "Give up", hope whispers… "Try it one more time".

- Author Unknown

The Words We Choose.

To the marketers, communicators, fundraisers, educators, healthcare providers, medical students, and everyone else who wants to talk about diabetes in a public way:

Please choose your words wisely.

When your "awareness" pitch uses language like suffers from, I have to assume that you have little to no idea what living with diabetes is really like. I'll clue you in: we don't want pity. Most of us are not suffering. We want empathy, not sympathy.

I've had type 1 diabetes for 26 years. Do I look like I "suffer" to you?

When you talk about diabetes in generalities; when you fail to specify the type of diabetes you're talking about; when you use one word to try to encompass and summarize the colorful spectrum that is diabetes - you sound ignorant. And we stop listening.

When your header image pairs up a familiar diabetes awareness logo with a guy holding a triple cheeseburger, I'm disgusted and ashamed... for you. Not for me.

When you communicate, you need to know your audience and how they want to be communicated with, and then follow that. It is your job to enlighten without offending. It is your duty to advocate without resorting to fear and shame. You must be more mindful because what you say and how you say it has far-reaching implications on how everyone views diabetes.

When you communicate, you are positioning yourself as a voice of authority. You are trying to speak for me even if I don't know that you are or want you to, and there are ways to do that which won't degrade me or my disease. Want to know what they are? Go peruse the diabetes online community. Read some tweets and blogs. Watch the videos we make. Or, I don't know, crazy idea here: go find some actual people living with diabetes and talk to them.

Empathy, not sympathy.

Words are important, and you need to choose yours oh, so carefully. Otherwise I'm voting that Diabetes Awareness Month needs to be followed by Blood Pressure Awareness Month.

The next time you go to write one of these things, let me suggest something: try a little more hope and encouragement. Try using facts without layering them with blame, and address us and our condition respectfully. Try talking about people with diabetes as if they are just that... people.

A little respect goes a long way.

1 Sweet Life.

My late teens were a time when diabetes really started to weigh on me, and I didn't always feel equipped in dealing with the whole "I'm going to have this forever, probably" thing. Testing didn't happen often, taking insulin wasn't a consistently timed routine, and I somehow got to a place of thinking that I was the only one struggling so much to be that "good diabetic" I kept hearing so much about. 

It seems like it's that way for a lot of folks - the teens and early twenties can be some of the worst in terms of management - physically, emotionally, socially, everything. There's a bit of a gap in support systems for this age group.

That's where a new social networking site called 1 Sweet Life comes in:

1SweetLife.org is a new social networking site designed for teens with type 1 diabetes and their families. The founder, Brad Lowder, is the father of a type 1 teen and he is really passionate about creating a place for teens to feel normal and accepted.

A little about their vision:

Our vision is to motivate our members to take better care of themselves so they can lead healthier, happier, longer, and more fulfilled lives. We’ll use fun, creative strategies, and cutting-edge tools and technology to address common challenges.

Thanks to Mike Lawson for the heads up on this new community! Go check it out at www.1sweetlife.org and on Facebook.

Beads and the 'Beetus.

As much as I love interacting with the diabetes online community, I very much appreciate the offline opportunities I get to hang out, too. It's tough to beat the chance to be face-to-face; to wear our insulin pumps out in the open air; to compare glucose meters by some other way than holding them up to the ol' webcam.



Because diabetes gives you super powers, identities have been protected.
(Except that I'm the only non-Medtronic user in the bunch. Foiled!)



A few months back, I found a couple of ladies my age-ish who also have type 1 and live where I live. We met for dinner (it felt very much like a blind date, as we connected online first, and I brought them roses) (kidding, I didn't) and found that we clicked really well. We talked about a lot of things that night, and one sticking point was, "Why isn't there a support group here for adults with type 1?". (The local JDRF chapter has a kids group that has been going strong for several years, but the adults version never really took off, so they stopped.)

The conversation then transitioned to, "Well, we could always just start one..."

And so we did. We meet once a month, and we've grown our numbers a wee bit. Not everyone comes each month, and not everyone who RSVP's shows up, but that's okay. We're providing the resource we wished had been there for us, and it needs some time to grow. It's kind of like that Gandhi quote, if I may get all philosophical for a moment: "Be the change you want to see in the world". It might as well be us, right?

Last night we met at a bead store (not a bread store, much to Amanda's chagrin) and made some jewelry - some of us made medical IDs, and some of us made the normal stuff. We even got to do some advocacy, as the store owner had many questions for us about what type of diabetes we had, how insulin pumps work, and what we can or cannot eat. Boy, did she ask the right people...

I'm especially in love with the blue one I made, and plan to wear it at least every Friday. Thanks for a great time, as always, ladies! :)

Wrap-Up.

Today's post is a smattering of randomness, reaching many places on the emotional spectrum. Let it begin!

• You may have noticed a new purple button over on the left side of my blog this morning. My friend Meri, who writes the blog Our Diabetic Life and is the mom of four boys - three of whom have type 1 diabetes - could use your help. Her husband was recently diagnosed with metastasized melanoma, with tumors on his brain, lugs, and in his abdomen. Please send any positive thoughts, healing vibes, prayer, or whatever you're comfortable with, their way. There is also a donation page set up, should you be so inclined, which can be found by visiting the Facebook page.
• For those who don't follow me on Twitter or Facebook, you might not know that You Can Do This officially has a table at Friends For Life (!!!!!!) - you can check out the map here to see where I'll be! Thank you, again, to all who have offered their help in making it happen. 
• Speaking of You Can Do This, I was interviewed by CallingAllTypes.com this week. You can read the interview here.
• Either my body just laughed off the antibiotics I took last month, or I've developed a new sinus infection. It's been a month now. I'm done being "real people sick", okay?
• And lastly, I came across what I think might be the most beautiful analogy I've ever heard regarding what online community support for PWDs is like. It was written by Babs on a post that Scott wrote recently.

I have this picture in my mind of this wide dirt road, where each of us is walking, toward the same goal. Some are walking ahead of me, some behind. Some are running, others are taking their time. I see you further up the road than me, looking back and waving, "hey, try this side of the road, it's less bumpy up here!" I don't know what my health would be like today without your guidance.

I think it's very much like that - we're all on the same road, and we're helping each other find the less bumpy ways of traveling it.

Gestational Diabetes.

Last night, a dear friend of mine who is currently pregnant with her first child sent me an email. Within the first couple of sentences, my heart sank. She has been diagnosed with gestational diabetes, and was searching for some "help me know what to do and how to not freak out about this" insight in the meantime, before she goes to see a dietician next week.

Admittedly, I do not know as much about gestational diabetes as I'd like. I pointed my friend to Diabetic Mommy as a resource, but past that, I didn't have much to share with her.

Can any of you recommend good resources for her, or advice regarding the journey she's now on? Past the regular exercise and good food choices that we all are supposed to make, what else can she expect to focus on? What will likely be on her checklist of things to do? What words of encouragement can we give her?

Any help you can offer is greatly appreciated.

Best of the 'Betes Blogs: January Selections.

As I mentioned on Friday, I'm hosting the "Best of the 'Betes Blogs" carnival thingie today. (Carnival thingie! Technical term!) This round-up of posts exists with the idea that there are likely a whole slew of blogs and posts out there that some of you haven't discovered yet, and by pointing those out in an organized way each month, everyone's circles of support might expand a wee bit.

Nominations are in, and posts have been read. Thank you to everyone who sent in their selections!

And now, let the linkage begin:

Sometimes low blood sugars involve Yoda, gummy bears, and molasses legs. [Humor]

"I missed! I'll try again." [Vlog]

"The one thing you know right away is that it’s going to be tough to dress this up." [Photography]

Not talking is not the same thing as not caring. [Advocacy]

I think many of us might be happy to wear one of those vests, if this is what it involves. [Celebrity]

There's no time like the present to get things out in the open. [Non-D Post]

Searching for kindred souls. [Type 1]

Twitter, and the people who "get it". [Type 2]

"And then I learned." [Type Awesome]

"I cried, gasped, and winced. But it was what I needed."[Type 1.5/LADA]

Mistakes happen, and sometimes they involve an ambulance. [Mistake]

"Never abandon yourself." [Motivational]

Diabetes makes you special. [Art]

Congratulations to everyone who was nominated - you had some great company! 

A Day in the Life

A Diabetic Ballerina

A Sweet Grace

Ann Rosenquist Fee

Bitter-Sweet Diabetes

(Buzz Buzz) No it's not my cell phone

Death of a Pancreas

Diabetes and Celiac Sunshine

Diabetically Speaking

Dorkabetic

I Am Your Pancreas

Livin' Healthy and Gluten-Free in Kansas

My Diabetic Heart

Scott's Diabetes

Six Until Me

Texting My Pancreas (not hyperlinking this one, because... duh.)
Tightrope Tango
The Angry Type 2 Diabetic
The Chronicles of D-Boy and Ribbon
The Diabetic's Corner Booth
The Princess and the Pump
The Teal and the Blue
The We Cara Lot Blog
This is Caleb

Next month's Best of the 'Betes Blogs will be hosted by Sue from RFamHere's Ramblings, so be sure to check in with her for February's results!

If you'd like to embed the BBB logo on your blog, here's the script. (Just replace all [ ] characters with < >, and you'll be golden.)

[div align="center"][a href="http://www.bestofthebetesblogs.com" target="_blank"][img src="http://momentsofwonderful.files.wordpress.com/2011/06/bbblogo-final-e1309479808835.png"][/a][/div]

Not So Different.

A dear friend and I were having a conversation recently - one of those "stay until they shut down the coffee house, because we have that much to talk about" kind of chats. She's not part of that bubble of health activists and patients that I am so often surrounded by online; in fact, health isn't a topic we talk about often. We grew up together, and while she does not have diabetes, she does have other life-long health adventures to navigate. As I'm looking back on the conversation now, it's surprising me a bit how much of our conversation was actually dominated by our health. (It could be because we're getting older and more comfortable talking about these things out loud; it could be because she knows I talk about my own health online; it could be because it was just time to let it out.) While we may have been dealt different cards in the health department, so much of what we discussed was the same.

The thing is, everyone has something. Diabetes, asthma, back pain, MS, family issues, debt, anxiety, depression... no one is perfect, and no one is without problems and challenges in life. The differences can lie in how we react and respond to those things, and how much we let the world in on it. (And let me say this - there is no "wrong" response. Everyone has different life experiences to draw from, different emotional states, varying preferences when it comes to privacy - and that's okay. It doesn't necessarily make one person's "bad" any worse than someone else's.)

Having that talk with my friend highlighted something important for me to realize as an advocate for people with chronic health conditions: while our afflictions may not be the same, we - as people, as emotional beings - are not so different. When my friend was talking about the medication she takes, she noted, "I'll have to take it for the rest of my life". I remember feeling that way - dreading this truth - when I was diagnosed with hypothyroidism. There were already "things" in my life - why was I getting another one? Would taking this new medication change my personality; who I was? I didn't want to take another pill every day for the rest of forever!

And when we talked about the stigma surrounding anti-depressants, "I was upset at first, but now I realize, it's just that my body doesn't make that stuff anymore. I have to help my body out by supplementing it... just like insulin!" I smiled, because she hit the nail on the head. We find out what's missing, and we take care of it. It is no one's fault, and blame serves no one. We find the issue; we find a way to patch it up; we move on. The way we get ourselves to "normal" doesn't speak to our character, morals, work ethic, or decency as a human being - but our grace in doing so can.

Those of us who have to do that supplementing share many of the same concerns - how different will I feel? Will there be side effects? Forever is a long time to be on a medication... can I afford this? Can I afford not to take this? How will this condition affect how others view me? Am I going to allow this particular "this" to define who I am?

People with chronic health conditions have much in common, and we're stronger when we can come together over what we share.

There Is No Spoon.

I'm not sure where it began.

It probably wasn't a singular moment or comment that began that ever-growing snowball. It likely was all of those little things, laid one by one on top of another; melting into a suffocating landslide of guilt and shame.

Probably, it was the college years when my A1C started climbing and I felt as though I was doing all I was able and willing to do at the time - but it was never anywhere close to good enough.

It could have been the many, many times where an endocrinologist visit ended in tears, because my answers were never the sort that could pass their test. It could have been the dread of those appointments eventually causing the pre-appointment build-up of anxiety and just plain fear. (And then, beating myself up over canceling the appointment.)

It could have resulted from not getting to hear the experiences of other real-life patients - of not knowing one single soul on that college campus who also had type 1 diabetes. I didn't know anyone else there who was living this same routine of shoddy math, bodily defiance and food distortion that I was.

It could have been my almost certain belief that one day, because I could never "get it right", I'd inevitably lose my eyesight. Or kidneys. Or toes. Take your pick.

It could have been realizing that "good enough" might not actually be.

It was seeing the impossibly low goals that my doctor had for me, and wondering, "How on earth do people do this? How do they do this, and still live a life? How can they enjoy that life, when all they're apparently thinking and worrying about is what diabetes is doing to them?"

It was being absolutely convinced that every single other diabetic in the entire universe must have this figured out, except for me.

I was convinced that I was the only screw-up. The way my doctors reacted to my self-care only reinforced that belief - because the only reason they'd be so shocked and disappointed would be because I was their worst patient, right? Because everyone else was achieving these kinds of numbers? Isn't that what was happening?

It was partly because questions were phrased, "Why are you still high in the mornings?", and "You are low way too often; what are you doing to cause that?", and "Why didn't you do what I told you to?".

It was beating myself up over my failures, then resigning myself to futility.

It had never occurred to me that a "perfect" diabetic wasn't actually a real thing. My past experience had shown that the medical world (which was all I had at the time, as this was B.D.O.C.) tended to make it very clear that there is an acceptable range, and it's [here]. And if you can't get yourself there, it is because you aren't trying hard enough; you aren't disciplined enough; you aren't following their guidelines as you should be. The focus of blame tends to be on the patient's ability to self-manage, not on the disease itself.

It's one of the greatest gifts that bonding with this community has given me. Though it took a while for this to really sink into the parts of my brain and heart that can truly believe something, I think I can finally start to believe that there is no "perfect". There is "try your best"; there is "learn from your mistakes"; and there is "never give up". There will be questions without answers. There will be numbers without logic.

There is no productive benefit to berating myself. There is no positive benefit to my health when I internalize what I perceive to be "failure".

I can choose to let the outcomes of my diabetes decisions define who I am and how I live my life, or I can choose to accept the reality that the only parts I can consistently control are how I feel and how I react.

I have begun to accept that there is no spoon.

CWD FFL - That Feeling.

Every night felt like one of those great slumber parties you have when you're a kid, where you want to stay up as late as you possibly can and giggle until your sides hurt.

You enjoyed each moment as best you could, but never quite fully - because you were ever cognizant of how fleeting this time together would be.

photo credit: Jacquie

You hugged and cried and laughed with family, who were technically strangers. Our blood may not have been related, but our pancreases (pancrei?) belonged to the same club.

photo credit: Sara

We all wore the Green Wristband of Significance. We swam with our pumps and sensors and IV tape and scar tissue and bruises out for all the world to see. We did synchronized swimming. (Okay, we just did the Cupid Shuffle while in the pool - but that counts!)

photo credit: Sara

The Diet Coke was, for the one-time price of $14.90, limitless. (And seemed to cause some dehydration - but that's another story.)

There were free cupcakes at one point.

High and low blood sugars abounded. Emergency supplies were exchanged. Humalog pens were lent out. The Florida humidity meant a sweaty early morning walk to the convention center each day. Rollercoasters made us queasy.

Every day was so imperfectly perfect.

original photo credit: Martin

How do you sum up something like that? How do you quantify it? How do you explain to anyone without diabetes what that feels like?

And how cliché is it if I say that I really do feel like I have Friends For Life?

When I signed up for the Children With Diabetes Friends For Life conference, I did so with a tiny thought in the back of my mind: With a name like that, I hope there's a place for an adult like me. This was my first CWD conference, and even though I knew adults with type 1 who had gone before (and enthusiastically recommended it), I was cautious about getting too excited.

2011 was the first year that CWD had an "adults with type 1" specific set of sessions, and so I didn't set much in the way of expectations of what those sessions would be. Truthfully, my main reason in wanting to go was to get to hang out with that great assembly of people for 5-ish days.

I set my expectations way, way too low.

I thought that some sessions had good value, like the "Finding Support Through Social Media" session with Scott and Kerri - it had a casual feel to it, and those of us who were proficient in the subject matter could lend advice and ideas to those who were new. Kerri's session on "Diabetes and Pregnancy" also was a favorite - except for those awkward moments when a man would try to walk into the session halfway through (were we so quiet, they thought the room was empty, maybe?).

I thought that some sessions were pointless, like the Novo Nordisk sponsored "Grown-ups with type 1" hour. The facilitator didn't seem to have any working knowledge of life with diabetes, and it showed. Painfully. ("Do you try to avoid lows?" "Raise your hand if your last A1C was under 7!" It was totally uncomfortable, and didn't really seem to accomplish much beyond providing some market research findings for the pharma company sponsoring it.)

The session that had the most punch for me was the "Avoiding and Overcoming Diabetes Burnout" session with Dr. Jill Weissberg-Benchell. (She is both a pediatric psychologist and a CDE, and "works regularly with children and teens and their families to facilitate coping with diabetes and other chronic conditions". And, really, I've never met a person who so totally "got it" without "having it" themselves. She is a rockstar.) What started as a guided discussion on managing the day-to-day of diabetes turned into one big group therapy session. Fifteen of so of us adults with type 1 sat in a circle, finishing each other's sentences and passing each other the Kleenex. It was... beautiful.

I know that won't sound like a good time to some, but it was exactly the honest, gritty conversation I needed to have. And with just the kind of people I needed to have it with.

That feeling - the one where you feel understood in some unspoken way; where you feel like you are "among your kind"; where you fear your heart might explode from the joy it's holding? It was one of the best gifts FFL could have given me.

* * * * *

Disclosure-y stuff: The CWD people did not ask me to write about the FFL conference, nor did they provide any compensation for my attendance. All expenses associated with this trip were out of my own pocket, and as always, all opinions are my own.

CWD FFL - Getting Back.

Well, hi there!

The absence of free wifi, a jam packed schedule at the Children With Diabetes Friends For Life conference in Orlando, FL, and my phone's refusal to publish a blog post (not really so smart, are you, Mister Phone?) didn't allow for the intermittent blogging opportunities I'd hoped for last week.

And yet, now that I'm home (but nowhere near unpacked) and have a bit of time, I don't know where to start.

There's so much I want to tell you - about the conference; the "adults with type 1" sessions; D-Coaster Day; the people I met; the fun I had. I want to talk about why I think next year can be even more great. I want to find a time machine and bring you all back with me so we can all live that week again.

But for now, I've got this.

One room, three PWDs, three Dexcoms, three insulin pumps,
and one Super Dog.  The night-long chorus of pump and CGM alarms,
combined with canine sleepy noises, made for some ill-rested nights -
and I wouldn't have wanted it any other way. (Those BG readings, however -
those I would have been alright with changing.)

Roomies!

The Team Type 1 crew at FFL 2011. And also, me.

The irony of attending a diabetes conference - ridiculous blood sugars.