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Posts tagged ‘type 1 diabetes’

Looking Back: Crabs are Evil.

I’ve always struggled with the right amount of carbs for my day-to-day diabetes management (that sounds so formal, as if I plot this stuff on a spreadsheet, which I do not) and overall, my blood sugar roller coaster is less intense when my carbs are minimal (or deeply imbedded into exercise).  Today, I’m looking back at a post from 2010 about carbs, the perils of spellcheck, and finding what works for you.

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Crabs are something that people with diabetes are constantly grappling with.  Are crabs good for us?  Should we be avoiding crabs at all costs?  If we have too many crabs in our diet, will our A1c go up?  What’s the official recommendation for diabetics as it pertains to crabs?  Has anyone ever really tamed the wild crabs?  Is anyone eating crabs, right now, as they read this?

(Note:  Spellcheck is my nemesis right now.  It always, always wants to change “carbs” to “crabs.”  As though I have anything against Sebastian and his little sea friends.  Spellcheck also likes changing “bolusing” to “blousing,” as if wearing a puffy shirt is a verb.  For the record, I have nothing against crabs.  Crabs are fine.  And, in my opinion, carbs are fine, too.  Spellcheck is a bit of a bitch, though.  /digression)  

In all seriousness (sort of), I’ve been told, time and time again, that carbs are evil.  That if I maintain a diet that’s reasonably low-carb, my diabetes will thank me for it.  But I don’t think that carbohydrates are the enemy.  In fact, they’re my best molecular friend when my blood sugar is hanging out in the trenches.  (See also:  Reese’s)

But.

I did notice, as I was gearing up for my wedding and working out more than usual, that my very low carb diet and my consistent exercise regimen made for minimal spikes in my blood sugar.  It wasn’t a perfect system, but subbing in vegetables for mashed potatoes at dinner time made for a post-prandial under 200 mg/dl, which (pre-BSparl), was a solid goal for me.  Granted, I didn’t avoid carbs all the time, but I actively avoided high carb diet choices because I knew both my weight and my A1c would pay the price somehow.  And now, post-BSparl, I’m trying to go back to that lower carb lifestyle, because that helped keep me at a weight I was more comfortable with.  (Not that I’m actively avoiding carbs now, thanks to the epic breastfeeding lows that crop up every few hours, so I’m giving myself a big ol’ bell curve on getting back into shape.)

For me, part of the carbohydrate conundrum is user error.  Pre-Bsparl, I was a bit of a lazy boluser.  I never bolused well in advance of a meal, and my post-prandials (and my overall A1C) definitely paid the price over and over again.  It seems that I need to get my insulin pushed through my system at least 25 minutes before I sit down to eat, not five minutes before.  I learned this lesson (23 years too late, eh?) while I planning for baby, and during the course of the pregnancy, it was definitely the case.  Bolusing well before the meal worked better for me.

To each diabetic their own, I think, when it comes to carbohydrate intake.  Some people are able to manage high piles of carbs without the messy spikes.  Other people, like me, might be clumsy with their insulin.  Or sometimes the decision not to carb has nothing to do with diabetes (as in my case, and in the case of my husband) – we go lower carb for weight management reasons.  But there’s no set magical diabetes diet that cures all that ails ya.  Eating carbs, or not eating carbs, is a personal decision that each individual diabetic needs to figure out for themselves.

In the Sparling house, we tend to avoid the carbs.

And we also arm ourselves against the crabs.  Because seriously, you never know.

Friday Six: But Not On Friday.

SUM stuff from around the Internet:

“The latest in this trend is the meme showing a fat little girl titled ‘Lil Diabeetus snacks’ as a take-off to Little Debbie Snacks.  It’s being bandied about on FaceBook as ‘cute’ and ‘funny’; an appropriate name change.  Is it funny?  I don’t think so.”  Kate weighs in on the Facebook meme.

Tuesday’s #dblogcheck was a community success, and seems to have woken up many of the sleeping bears (if you want to picture blog commenters as sleeping bears, which I do, because that’s adorable).  Check out Chris Snider’s excellet Storify recap of many of the blog posts and be sure to say hello on some new and old blog favorites.

Wendy’s daughter has gone to Clara Barton Camp … and she’s also gone BIONIC.

Athletes inspire kids with diabetes at Friends for Life Conference” is the title of this video, but I’m going to assert that adults are pretty inspired by Charlie and Jay, too.

An eighth grader took She Still Smiles and made it into something really, really cool.  Read about Talia’s project here.

“Her former team dismissed her for having diabetes. Her coach and teammates stood by her and struck out on their own.”  Read more about Rebecca Young here, and consider supporting her!

I sent emails to my representatives.  Now it’s your turn.

The “Fakeabetes” Challenge – pretending to be a PWD for the day!  Read more from Kim and Whitney on this day with diabetes.

This post from Meri is a call-to-arms, and I’m ready.  “The Movement Has Begun.”

JDRF appoints Derek Rapp as new President & CEO – here’s more information on this change in leadership from the mothership itself, and a post about the changing leadership of ADA and JDRF on Diabetes Mine.

Why Should Diabetes Advocates Enter This Food Fight?”  Hope Warshaw explains.

“ADA and others have sent in their comments, but the FDA needs to hear our individual voices as advocates.”  You can give the FDA your thoughts on the proposed Nutrition Fact Label, and you have until August 1st to do so.  More on the how, and why, at Diabetes Advocates.

The FDA will host an online conversation (“A Virtual Town Hall”) for people with diabetes on November 3.  And, according to the crew at diaTribe, they want to hear from you!  Click this link for more information and the link to email diaTribe, and you can also join the conversation on Twitter using the #DOCasksFDA hashtag.

My favorite part of this video?  “I can read.”  Love, love, love.

How Often Should I Change My Lancet? (A “Grost.)

source: Type 1 Diabetes Memes

(Taking a cue from Glu today because when this post rolled through my feed, I was like, “Hmmm.  A lot now, but before?  NEVER!!”)

Every single time there’s a new meme about changing the lancet in a finger pricker device (nope, that is not the technical term), I laugh because they are all true in that “whoops” sort of way.

Upstairs in the bathroom closet, I have boxes and boxes of lancets for all kinds of different poker devices (again, not the technical term).  All different sizes and shapes and gauges … years and years worth of lancets for half a dozen different devices.  (Except The Guillotine.  That thing was retired decades ago, thank goodness.)  And the reason I have so many lancets stashed?  I went years without regularly changing my lancet.

Gross.  I know.  And I’ve seen that photo of what a needle looks like before use, after one use, and after six uses and yes, it grosses me right the hell out.  But for a long, long time, I changed my lancet once a month.  Maybe once a week, depending.  And I only changed it if it didn’t procure a good blood droplet or if it went into my fingertip and got “stuck.”  (You know what I mean … when you press the button and the lancet deploys, only it lodges itself into your fingertip and has a weird suction feeling when it pulls out?  Horribly horrible.)  Lancet swapping-out was a shameful non-priority for a long time.

Two things made me start changing my lancet regularly:

ONE.  A friend told me about how she’d heard a story about a person with diabetes whose fingertips were downright gangrenous because they didn’t change their lancet.  “Ew, really?”  “Really.”  And even though I stand firmly on the “hope vs. fear” motivation concept, this story about mostly-dead fingertips made me want to throw up.  Then I started searching the Internet for information on needle reuse and the photos made me want to apologize profusely to all my digits.  I had no idea how nasty and serrated the needle edges became after just one use.  I thought about all the times I had injected syringes through my jeans in high school.  I thought about how a box of lancets could last me two years.  I thought about how gross I was.  Gross, gross, groooooosssssss.

TWO.  And then I explored lancing device options.  I had heard really good things about the Accu-Chek Multiclix (mostly from Sara, because she frigging loves hers), and the device was snazzy because it comes with a drum of lancets that automagically swap out, but the size of the thing was too big for the case I kept my meter in.  Switching to the One Touch Delica was the winner, for me, because the lancet gauge is so thin that I’m forced to change it regularly because otherwise, I don’t bleed.  (It becomes that dance of pull back the device, press the button, nothing happens, repeat 10x, change lancet and curse.)  Like it or not, I have to change my lancet regularly or the device becomes useless.

Now I change my lancet once a day.  Every day.  And every time I kill a box of lancets, I feel accomplished because in the last four years, I’ve gone through at least two dozen boxes.

In the 20+ years prior?  Probably the same number of lancet boxes.

 

 

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

Guest Post: Becoming a CDE.

Abby has been busy.  Busy doing what, you ask?  Earning her certified diabetes educator credentials!  And she’s done it!  (Congratulations, Abby!!  Hard earned, and well deserved.  The diabetes community is lucky as hell to have you in both the peer and healthcare professional capacity.)  Today, Abby has returned to guest post about her journey in becoming a CDE. 

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So remember WAY back when I used to talk about how I wanted to take and pass the CDE exam and then work as a pediatric diabetes educator?

Well, it happened. I’m not writing to brag or make you all jealous (though if you are, I don’t blame you; my job is awesome) but more so because I wanted to follow up on the process now that I’m at the end of it.

You can find the requirements toward becoming certified on this website … which is all well and fine, except they seem unattainable for most of us. I had a lot of people contact me when I started my journey asking how I was going to obtain the hours, how I was going to study, when I would take the exam, and how on earth I would find a job in this field. Here is how I did it (and by no means was this path anything short of lucky and filled with connections).   It may stir up some ideas for you out there looking to sit in my seat (actually, please don’t – I finally got a comfy chair at work and I’d appreciate if you didn’t steal it).

Step 1: I worked at diabetes camp. I worked for very little pay with crazy, crazy teenagers. I barely slept, I yelled at invisible squirrels with my co-counselors. I gave glucagon to unconscious friends and was the sounding board when someone needed to admit they were struggling with diabulemia. I let the kids dress me up as a goth teenager, I ate many meals without my hands. I checked blood sugars on sleeping 6-year-olds and jumped in a disgusting pond with all of my clothes on. And I loved every second of it. My time at diabetes camp was invaluable both to my personal life and to my overall diabetes education. As a PWD (person with diabetes), I learned more about my own care than I had in the years of living with it, and as a future CDE I learned the biggest lesson of all: no two diabetes are the same, and yet they all have to follow the same rules.

Step 2: My time at diabetes camp then helped me land a job as a triage nurse at an adult endocrinology office. Oddly enough, most of my job was NOT diabetes-related. In fact, I learned more about the other glands in the body than I did about diabetes, at first. What I did learn here – which proved to be more useful than the diabetes stuff, on some levels – was knowledge about Medicare, hypertension, and hyperlipidemia (among other co-morbidities). These are things that we usually don’t think of when we think of diabetes, but they play a bigger role than you’d imagine. Being a CDE means that you have to not only understand what insulin dose to change, how to check a blood sugar, and how to teach someone to use a pump, but you are required to know how all of this will effect the whole person, and the rest of their life. My time in this position taught me just how much I didn’t know about diabetes. I learned what to do for colonoscopy prep, how to manage blood sugars after a G-tube was put in, how to relay orders between a doctor’s office and a nursing home, how to deal with company reps, and how to talk someone through glucagon over the phone. It’s not all test strips and CGMs.

Step 3: I knew people who needed me. A local pediatric clinic needed a person to fill a role as a diabetes educator, and I applied. I had not yet taken the exam, but they were okay with hiring me knowing that I was eligible. (I also knew one of the CDEs already employed there from my camp connections, which I think helped a little.)

Step 4: The exam. Of the 200 questions, 175 of them were graded. Only 26 of this 175 were about disease management. Well, what were the other 149 about you ask? Good question. I had at least four questions about Medicare guidelines (see how my first job really helped here?). Many questions about which lipid lowering medication is indicated, or hypertension drugs I would recommend. Basically, this exam had very little to do with actual diabetes education. Diabetes infiltrates SO much of everyone’s life, and doesn’t end when you leave the doctor’s office. Aren’t you glad to know that CDEs are expected to not only realize that, but be knowledgeable about how diabetes can affect every other part of your health and wallet?

After all of that, I passed the exam (after waiting six very long weeks for my results) and I’m where I want to be. My path was not easy, but definitely not as difficult as it could’ve been. I was able to earn my required hours in a job that taught me a lot about diabetes, a lot about nursing, and was fun (the 8 – 5 work day didn’t hurt either). I was not forced to take the traditional “work on a med/surg floor for three years” route that all of my nursing instructors wanted me to do. I found my own path that made me happy and helped me reach my goal.

There are many positions out there that you can take to learn about diabetes and get in your hours. I know quite a few nurses who are the “go-to diabetes nurse” on their ortho floor, or pediatric floor, or even post-op floors. You don’t have to land a job in an endocrine office. You don’t even need to be a nurse to become a CDE. I would highly suggest getting involved with camps or orgs to boost your resume and skills, and from there do what you can, and learn what you can.  It’s not impossible, I’m living proof!

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Abby is a 20-something living in a much-too-cold state constantly wishing she was on a beach. She has had type 1 diabetes for almost 16 years and is currently updating all of the letterhead in her office to include “CDE” after her name. Her favorite color is purple, she just adopted two very cute little kitten brothers, and she would really appreciate if you could tell her peppers and tomatoes in her garden to ripen up already. If you have any questions about her journey from irresponsible college student to RN, CDE, she is more than willing to chat [Editor's note:  You can leave a comment for her in the comments section].

CGM in the Cloud: Personal Preferences.

“Why would you want your continuous glucose monitor information in the cloud?”

Fair question, especially coming from folks in the CGM in the Cloud Facebook group, which is heavily dominated by parents of children with diabetes.

I didn’t want to answer, at first, because I didn’t want to say the wrong thing.  When I meet with parents of kids with diabetes, the instinct to protect them is undeniable.  I want to tell them stories about people who are thriving with type 1 diabetes – “Hey, have you heard about the guy who is running across Canada?  Have you heard about the woman who gave birth to twin boys?  Have you heard about the couple who met and fell in love via the diabetes community?” – because that is the perception of diabetes that feels best to share.  It feels good to share successes, triumphs, proud moments.  You can thump your fist against your chest in pride; we are not held back by diabetes.

This is what I want to tell the parents of kids with diabetes.  Their kids will be okay.  Because that’s true – their kids will be okay.  But not without compromise, and that’s hard to articulate because it seems to fly in the face of “your kids will be okay.”  I don’t like reminding people that their kids with diabetes will become adults with diabetes because this disease is forever.  It’s uncomfortable to admit that diabetes is hard.  It’s hard to find words to illustrate the concept of, “I’m fine … sort of.”

“Why would you want your continuous glucose monitor information in the cloud?”

I’ve had some low blood sugars that have rocked me so hard I couldn’t recover, even after I had technically recovered.  Whether you want to admit it or not, diabetes requires extra planning.  Even the best and tightest and most well-controlled diabetes still comes with the threat of lows or highs.  This is why glove compartments end up crammed with jars of glucose tabs, and why back-up insulin pens litter the bottom of purses.  I was always taught to hope for the best – you can do anything with diabetes! – but to have a plan for the worst, should it happen.  Never ride a subway without snacks.  Never put diabetes supplies in checked luggage.  Always check blood sugar before driving.

“Call me when you wake up so I know you’re alive,” is a phrase casually uttered by my mother when my husband is traveling, but the honesty to it stops me cold.  Does my mom worry that something will happen to me at night?

Before Birdy was born, I had a healthy fear of lows, but after she arrived, that fear became something different entirely.  Now, a debilitating low blood sugar doesn’t just touch me, but it could hurt her, too.  When she was a few months old, my husband went away on a weekend trip and it struck me for the first time that if I didn’t wake up, no one would be there to take care of my daughter.  I pictured her in her crib, crying, alone, and without care.  The idea of her going without breakfast hurt me more than picturing my own unresponsive body.

Sounds dramatic?  It’s dramatic as fuck, because diabetes is quiet, until it’s not.

“Why would you want your continuous glucose monitor information in the cloud?”

Why?  Because having someone else able to monitor my blood sugars makes me feel safer.  I can’t make insulin anymore, but I can create peace of mind for myself, and for my family.

So I’m not waiting.  I’m not waiting for bad things to happen.  I’m taking a preemptive bite out of fear by putting another safety net into place.  When I’m traveling for work, I will have my CGM data streaming to the cloud, and my husband and my mother (as needed) will have access to it.  When I am alone in a hotel room, my family will have the peace of mind knowing that they can see my blood sugars while I sleep.  Same for when my husband is traveling and I am alone with our daughter.  As much as I know the CGM companies are working hard to bring this technology to patients, waiting removes the safety net that would help me sleep better at night.

I am not waiting.

 

 

The One About Broken Windows.

Tackling diabetes, one window at a time.

(See also:  caulk)

(And the second part of the CGM in the Cloud write-up will be up on Monday. A long night with a cranky Bird didn’t make for any decent writing. Thanks for your patience!)

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