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What is it like to take insulin?

This was a search term that brought someone over to SixUntilMe, and I realized they probably didn’t find their answer easily.  I don’t have a pile of “How To” and “Five Ways You Can …” sort of articles, despite the Internet trend in that direction.  (Closest I’ve come is the one about the ten best cocktails for people with diabetes.)  But I wanted to address it.  So …

What’s it like to take insulin?

The act of inserting the needle is one thing.  Years ago, I drew insulin into a syringe from a vial, tapping out the bubbles and then pressing the needle tip to my skin. Thirty years ago, my style was to press the needle through my skin in a slow, deliberate sort of manner, using the speed to gauge whether or not the injection site would hurt (and if it felt uncomfortable at first press, I’d move to a different site).  I still do it this way now, whether it’s a syringe, an insulin pen, or the infusion set for my insulin pump.  Controlling the pain is important to me.  It’s on the short list of things I can control.

The kind of insulin has changed for me throughout the years, as well.  Upon diagnosis in 1986, I took Regular and NPH, which were pretty sluggish and forced me to plan my meals around my morning insulin injection. I’ve also used Lente, UltraLente, Lantus, Levemir, Tresiba, Humalog, and Novolog.  NPH used to be rolled in my mother’s hands so it would mix properly before injection.  Lantus burned when I took it, and the burn would spread under the injection site for a second or two.  I’m currently using Humalog in my pump.  It claims to start working in 15 minutes but my body seems to make that timeline 35 min.

Insulin is serious stuff.  It lowers blood sugars.  Not enough keeps blood glucose levels higher than is safe, subjecting my body to the abuses of elevated sugars.  Too much insulin throws me into a “hypoglycemic event.”  I’ve had a number of low blood sugar episodes that have scared me.  “Scared me” isn’t really a fair description, either, because in some of those moments, I wondered if I was going to die.  Not being dramatic, but more pragmatic.  Will I be able to consume enough glucose to keep me from passing out, going into a coma, dying?  These thoughts sometimes go through my mind like a ticker tape when I’m severely hypoglycemic.

Physically, aside from putting a needle into my body, insulin is crucial to my body’s metabolic processes.  I’d be dead without it.  Dead.  It keeps my body from starving to death.  Acknowledging that is crazy, and gives way to the other side of taking insulin:  the headspace side.

Acknowledging that my ability to stay alive relies on the contents of a small, glass vial is humbling as hell.  The fact that so many people with diabetes cannot afford or access insulin and they die without it is beyond humbling.  Every time I finish a bottle of insulin, I make sure to grab every last bit, waiting for any bubbles to burst and grabbing them when they go liquid.  I do not waste insulin.  A bottle broken against bathroom tile is mourned.  And as the price of insulin continues to climb, my panic response does as well because not having insulin is not an option if I want to continue to exist.

That’s some crazy shit to think about as I tap the bubbles from a syringe.

So what’s it like to take insulin?  Humbling, if I think about how lucky I am to be alive after Banting and Best worked their magic.

But the weird thing is, on most days, I don’t think about it.  This hormone I’d die without, this item in my fridge that’s worth more than my entire house in total, it’s not something I deliberate or celebrate every day.  I just take it, ignoring any quick pinch on my skin and moving on.

… and that right there illustrates how lucky I am.  Which is why I’m ending this post with a call to donate to Life for a Child through IDF.  Nothing like sparing a rose a few months early.

The Baby Stuff Post.

Let’s make a list of baby stuff that I’d recommend, because I think it’s a useful post to do.

“WHAAAAAT??? No, this is a diabetes blog!”

Sorry.  I have some baby gear recommendations that I want to have as part of the archive, in part to pass along to other moms (with or without diabetes) and in part because I like going back and seeing what kind of resources I used with Birdzone and comparing those against what I have access to with the little Guy.

But this might be semi-useful if you are expecting a little one.  And if you aren’t, check back tomorrow when I’ll be talking with Adam Brown about his new book.

Car seat:  We went with the Chicco KeyFit 30 for both Birdy and the little Guy.  Safety ratings were high, the car seat base was easy to install, and being able to purchase multiple bases for multiple cars made it a good fit (both times) for our traveling family.  It’s a heavy car seat, even without a kid in it, which was tricky when I was recovering from c-sections, but I’d like to think my biceps thanked me for the extra output.  Unfortunately, because our kids are 6 years apart in age, we had to rebuy the car seat stuff completely.  No saving for years there.

Stroller:  We used to have the stroller that went with the KeyFit car seat (back in 2010 – this is one being sold on eBay and even this one is too recent) and we hung on to this stroller set forEVER waiting for baby no. 2.  Once the little Guy arrived, we hosed off the ancient stroller and used it until Guy was about 6 months old.  If I had to rebuy a stroller, I’d go with the one that fits the car seat because it’s very convenient to move a sleeping baby from car to stroller without going bananas.  Recently, we bought a BabyTrend jogging stroller for off-roading (bike path, neighborhood walks, big sister’s softball games).  So far, so good.  And no, I haven’t been jogging with it.  I’m too clumsy and awkward and would end up in a ditch.

High chair:  Hello again, hoarder Sparlings.  We saved Birdy’s high chair and busted that thing out again after her brother was born.  Back in 2010, we went with the Chicco Polly high chair (and you can buy one on eBay if you’re feeling nostalgic and/or you too would like to find 7 year old puffs in your high chair base).  Pros are that the buckles are strong and the base is secure.  Cons are that this takes up a lot of room in our kitchen.  If we get a new one, it will be a strappy-to-the-chair type.

Crib:  The crib our little Guy is sleeping in now is also Birdy’s hand-me-down one, which was so old and had moved house twice that we lost the original hardware set and had to scour the internet for screws to fit our model.  (Thanks, O.)  But when we first brought home our son, he slept in our room for seven months in a Graco pack and play.  Birdy had an identical set up back in the day.  This worked best for me both times because I was breastfeeding and could keep the crib right near our bed.

Breast pump:  I’m listing this under essential because I needed to pump in order to accomplish my goal of being able to travel for work while still breastfeeding my children.  With Birdy, I had a Medela Swing pump.  It worked great.  This time around, I had a Medela Freestyle.  It worked less great for me; I’m unsure if that was because I was more stressed/dealing with postpartum issues and wasn’t producing as easily as with Birdy or because of my age this time, so I relied almost exclusively on the Harmony breast pump.  I could use it on planes, in the car, at home … it made pumping a quick and pretty easy process.

The little storage bags were terrific for pumping while on planes because they traveled/stayed cold very easily.  And while I was pumping, I used a bag I received at the hospital (another blogger wrote about it here).  It was from Similac, but it came with a cold pack and was the perfect size for me to fill with the Harmony handheld pump, some storage bags, and the cold pack.  I dragged this bag around the country with me for the first six months, pumping in conference hotel rooms and airplanes.

Bottles:  With Birdy, we used plastic bottles from Medela.  This time around, we’re using mostly Avent glass bottles.  And as the little Guy needed bigger bottles, we’ve retired the 4 oz bottles as cups to let spider plant and English ivy seedlings grow roots in because I’m a plant nerd and cannot bear to throw useful things out see also: the baby crap we kept for six years

Baby food:  Now that Guy is chomping down on real food, I’m constantly making baby snacks.  I broke down and purchased a baby food maker (this one from Beaba) and some glass storage jars.  I thought I would regret the baby food maker purchase, but it was the best indulgence ever because I can make a few day’s worth of food very easily.  This afternoon, in about 30 minutes, I was able to prepare green beans, applesauce, mango, broccoli, cauliflower, and strawberries without ruining ANY of it.  As someone who cannot cook, this is a remarkable feat and the food processor thing is to blame for my success.

Odds and ends:  Sleep sacks are my FAVORITE because I believe in keeping blankets, etc out of my kids’ sleeping situation until they are about a year old.  Sleep sacks kept both kids warm without making me paranoid.  I also purchased a Boppy pillow both times and it definitely made breastfeeding after c-sections more comfortable.  Oh, and the frigging wubbanubs basically saved our lives.  My son doesn’t need a pacifier to fall asleep, but it’s very convenient to have one attached to a little stuffed animal for the moments when he’s wheeling around in his crib in search of a pacifier.  Wubbanubs are useful.  And adorable.

And that’s kind of it.  The rest of the stuff is totally not essential but completely fun.  Like onesies with suspenders on them.  And all the poop.  (Had to end that on a semi mommybloggy note.  Which I promise never to do again.)

DBlogWeek 2017: The Cost of Chronic Illness.

Diabetes Blog Week prompt for Tuesday:  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

Aaaaaaarrgggghhhhhh this post has me writing and erasing sentences left and right.  I’m not even sure where to start.  This whole topic frustrates me.  Best to jump right in:

I remember, when I was small and under my parents’ care, my parents had to battle with their insurance company to cover more than four blood glucose test strips per day for me.  Since becoming an adult, I’ve had good insurance where my deductible was $300, out of pocket max was $500, and all of my supplies were covered at 100% so long as I was “in network.”  I’ve had crappy insurance where my deductible was $5000, no out of pocket max, and my pump supplies were covered 80/20.  (Those two years were the most I’ve ever spent on care in my life.) I’ve never been without insurance because I was raised fearing a lapse in coverage.  When I graduated college, I had a job that started three days later so that I wouldn’t have a coverage gap.  I remember when Chris and I were first married, we struggled to find an insurance policy to cover the two of us in a way that we could afford while also providing decent coverage for my persistent medical needs.

Living without insurance coverage was always presented as a “DO NOT,” but as the years have gone on and greed, corruption, and the breakdown of the healthcare (wealthcare) system became dominant over caring for patients, I’ve seen how being insured can still break your finances apart.  Families struggle to make medical ends meet and oftentimes can’t, making awful decisions – if you can even call them that – between paying rent and buying medication.

I am not a conspiracy theorist.  But what the fuck, Pharma … why are you always raising prices on essential drugs?  Because you know we’re trapped?  Why did insulin cost like $45 per bottle when I was diagnosed but is now upwards of $280?  I can only understand so much R&D because after a while, it starts to read like GREED.

Reading articles like these give me such rage (with a side of panic):

Insulin price hikes tell us a lot about what’s wrong with drug pricing in America

Eli Lilly Raises Insulin Prices While ‘Supporting’ People With Diabetes

On Lilly’s unconscionable insulin price increase

Doubt what they say. Believe what they do.

Eli Lilly raised prices on 9 drugs last week

Patients Beg For Pricey Drugs On Facebook Black Market

And I see a dozen different advocacy groups working towards the same goals – improving access for people with diabetes – but they aren’t always working together, which is infuriating to watch.  (Also, Melissa Lee wrote a great note on Facebook about the word “access” – read here.)  I do not know the behind-the-scenes details of which org is talking to who and what funds what and who has opinions on what sort of things, mostly because I’ve been out of the loop for the better part of a year (something about an infant invading my home), but looking at the community from 10,000 feet, there are a lot of dots.  And they could use some connecting.  And to be totally honest, I have no idea how that will happen.

Check out these orgs/efforts/opportunities and see if anything leaps out at you.

Check out the T1International Diabetes Access Advocacy Toolkit

Join the Access Alliance

Join the Diabetes Patient Advocacy Coalition

Download the Diabetes Patient Advocacy Coalition app

Take action with the American Diabetes Organization

Support JDRF advocacy campaigns

Explore Beyond Type 1’s Focus on Access

International Diabetes Federation’s Advocacy resources

The 5Calls.org website is always awesome for policy action (not just healthcare)

Because here’s the thing:  our community is divided by a dozen different things but we are UNITED by our common circumstance:  diabetes.  By uniting and raising our voices with compassion and conviction, we can make the difference and become the change our community deserves.  The cost of chronic illness is staggering, but the price of staying silent will make matters worse.

… and how great is Diabetes Blog Week, serving as the opportunity you may have been waiting for to get loud.

 

The One About Expiration Dates.

On the Dexcom and Libre Rash Facebook group, I saw a note posted back in December from someone referencing sensors with an expiration date after August 17, 2017.

“Dex recently changed their mfg process to eliminate a substance that caused rashes in some. Get some expiration date AFTER 8/15/17 …”

Huh.  Interesting.  (Read: HOLY SHIT COULD THIS BE TRUE??!!) I’ve been experiencing a Dexcom adhesive rash since 2012 and despite many conversations with clinicians and diabetes device industry specialists, no one has a solution for this issue.  (No one openly acknowledges this issue, either, which I find weird.)  For several years, I thought I was the only one having a rash reaction to the sensor adhesive, but then the Facebook group popped up and holy shit, there are a lot of us.  (The group currently has over 1900 members.)

Since 2012, I’ve tried several workarounds for this rash issue.  Steroid inhaler spray, barrier tapes, the blessed JnJ Toughpad … nothing eliminates the rash completely but the Toughpad does the best job of giving me seven days of sensor wear.  Fine.  The data and protection I get from using a CGM is worth the itch.  (See also: two solid pregnancies, two healthy kids, an A1C I’m happy with, and a marked decrease in overnight hypoglycemic events.  See also also:  “hypoglycemic events” is a stupid name)

Expiration investigation.

A post shared by Kerri Sparling (@sixuntilme) on

My previous sensor shipment has an expiration date of August 7, 2017.  The shipment I received last week expires in November 2017.  Even though I have a couple August expiration sensors left to use, I’m skipping ahead.  I want to know if the rumors are true.

New one goes in in a few hours.  Here’s hoping.

 

Guest Post: DiabetesSisters Voices.

When it comes to research related to diabetes, I want to support those efforts as much as I can.  The power of sound data, plus patient stories, can move the needle on therapies, treatments, and empowerment for people living with diabetes.  Today, I’m lending my website to my dear friend Karen Graffeo, who wants to share some information on the DiabetesSisters Voices project.

*   *   *

What do you think of when you hear the words “diabetes research”? To be honest, until recently I thought of really smart people wearing lab coats. They might be trying to cure diabetes or working on diabetes prevention. They could be researching better treatments or they might be running clinical trials. And I also wondered if they might be researching things that don’t really matter to me as a patient. But when I thought about diabetes research, I never imagined it could include connecting with other women with diabetes from the comfort of my own home. And often while still wearing my pajamas!

My perception of diabetes research changed when I became part of the DiabetesSistersVoices project. DiabetesSistersVoices is an online community that combines forums with research. Members use the forums to ask questions, share experiences and search for resources. We chat with each other about what is important for improving our health and well-being, and our discussion will later help guide the research community.

Anna Norton, CEO of DiabetesSisters, explains more about this project. “We created DiabetesSistersVoices through a collaboration between DiabetesSisters, The Johns Hopkins University, The University of North Carolina, TrustNetMD and our Stakeholder Advisory Board of women and diabetes advocates. This project was funding through an engagement award from the Patient-Centered Outcomes Research Institute (PCORI). Our goal is to provide an interactive, engaging website for women with all types of diabetes. The conversations that happen will help us determine the unmet needs and unanswered questions that women with diabetes have.”

At the end of the project, the top research and health care questions will be collected for a final report: The Patient-Centered Women’s Health and Diabetes 10Q. This report will help policy-makers, advocates, researchers, clinicians and other groups to better understand what priorities in research should be.

I’m serving as moderator of the site, and it’s really exciting to see all kinds of conversation and questions being discussed.   But it’s important to have as many voices participating as possible, so we can truly represent the needs of all types of women with diabetes. If you are an adult female in the United States and have been diagnosed with type 1 diabetes, type 2 diabetes, pre-diabetes or gestational diabetes, you are eligible to participate in this study. Go to our website www.diabetessistersvoices.org and click “Register”. Once you’ve completed a screening and an online consent form and survey, your account will be approved and you can join the conversation and help drive important research.

I hope you’ll register and come connect with us. We need your voice and your perspectives in our discussions. And you don’t even have to change out of your pajamas first!

Find DiabetesSistersVoices at https://diabetes-sisters-voices.org. Follow the project on Twitter at @ds_voices.

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Thanks for all of this information, Karen!!  I’m signing up today. 🙂

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