Guest Post: Kickstarter for Pumpstash, Shorts for Pumpers!

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By Corrine Logan

When I was 6 years old I first started on the insulin pump. It made my life (and my parents’) so much easier. I could eat whenever and whatever I wanted and didn’t require as big of a bag wherever I want. One thing that quickly became a problem, however, was keeping the insulin pump in place. It was just too heavy for my little 6 year old body and was always falling off and ripping sites off.

Flash forward 14 years, and I am now 20 years old and the pump still makes my life so much easier. It makes diabetes so much more manageable, but it still gets in the way. While working out and wearing dresses, figuring out where to put my pump becomes an endless dance of sticking it one place, having it fall out, sticking it somewhere else, again and again.

2014-11-14 13.11.52I’ve realized I am not the only one with this problem, which is where Pumpstash comes in. Pumpstash shorts  and spandex shorts designed to hold an insulin pump (and CGM, and phones etc) with the option of a front or back pocket to keep them safe and out of the way.

This is fix to a minor solution in diabetes, but I also want to help support finding solutions for the biggest problems, so 10% of all proceeds are going directly to the Juvenile Diabetes Research Foundation in their pursuit of finding a cure.

Pumpstash is currently running a Kickstarter campaign to raise money for manufacturing. We need to raise $5000 by June 18th, and have already raised over $3000. Please check out our campaign to help us reach that goal. Find out more information about Pumpstash at www.pumpstash.com.

Different, Not Easy

The other day I posted a message on Facebook that was a little bit misunderstood, so I decided to take it down and make it a blog post instead. Hopefully the expanded words will make it a little clearer what I meant.

What I had posted was something to the effect of this:

One of the hardest things about meeting a newly diagnosed family is the heartbreaking optimism that things will get easier. It never gets easier. It gets different, but it doesn’t get easier.

Now, my interpretation of the comments is that this came across way more depressing and hopeless than I had intended to convey. I don’t think life is hopeless and I don’t think life with diabetes is an endless slog of misery.

What I actually meant when I said “it never gets easier” is that I don’t think managing blood sugars ever becomes simple. So maybe that’s the word I should have used instead of easy. Simple conveys a sense of thoughtlessness that I don’t think you can ever attribute to diabetes. Managing diabetes for some people might involve periods of time of “going through the motions” and that’s fine, but really good diabetes management, I think, requires a lot of deft and flexibility. And that only comes from constant vigilance, interpretation, action and evaluation, all which are not easy.

Over the past few months, I’ve occasionally heard someone (usually a newly diagnosed parent) share that it seems they had just figured out the [enter diabetes management tool or technique here] and now all of a sudden, blood sugars are mysteriously high. And I have to bite my tongue sometimes because it feels like the logical answer would be “Well, of course it changed. It’s diabetes.”

Earlier this week, after I had gone on a run that had required a careful balance of a pre-run snack and a temp basal, I tested my blood sugar and was pleased with a 158 mg/dl. And I thought to myself how long I had been running and yet how every run that didn’t end in a high or low blood sugar was a major accomplishment. I’ve had diabetes for 21 years and yet I still find myself pleasantly surprised (or, conversely, deeply horrified) with so many of my blood sugars.

And it’s not that living with diabetes itself is always hard. After so many years of unpredictability, you can almost train yourself to be comfortable with those unpredictabilities. Not always, but you can try. But the expectations of chaos doesn’t mean the diabetes easy. It just means you’ve trained yourself not to fall into self-blame or self-judgment when they happen.

Another thing that can make diabetes easier is our own life transitions. What was once difficult for me is now easier because I’ve lived through it and it’s no longer an obstacle. Dating with diabetes used to be hard. Now I’m married. Standing up for myself and explaining diabetes used to be hard. But now I’ve done it many times and I’ve learned to advocate for myself. It’s not entirely enjoyable, but it’s not difficult.

But the diabetes management? It’s still really hard sometimes. I still haven’t figured out a predictable way of managing my blood sugars during PMS or while exercising. Sometimes what worked last time works again, but a lot of times it doesn’t. My days are never the same, and therefore my blood sugars are never the same. I don’t think diabetes is impossible and I don’t live dreading each day.

I’m two decades into living with diabetes and I’m no closer to having this thing “figured out.” It takes a lot of work, every day. It changes constantly. I’ve never felt “done” with my diabetes. Even though I know and understand the major influences of my blood sugar, I still find myself with highs and lows when I’m not expecting them. That’s what I mean by “it never gets easy.” It changes. It’ll get different. The things you find difficult today may not be the same things that you find difficult tomorrow, or next week or next year. And I feel badly for people who think that it does become easier.

I did like what Scott Benner commented on Facebook, before I deleted my post. He said, “It doesn’t gets easier, you just get better at it.” I think there’s a lot of truth to that, but I would add that what you get better at is dealing with the fact that it’s not easy. I think a lot of us get used to it being hard. We learn to expect it and it doesn’t throw us for a loop or under the bus when it happens. Sometimes that understanding doesn’t last forever. We go through periods where we can’t cope with constancy of diabetes and we burn out. Diabetes ebbs and flows differently for people.

It certainly isn’t my intention to bum people out or fill our space with negativity. Saying diabetes never gets easy probably sounds pretty bleak, but I personally think that truth and realism is more important than false expectations.

I have been reading a little bit about grief lately, and from what I understand, there might be some similarities between grief and diabetes management. Grief for someone that you love never goes away. It’s ever-present, but you learn to live your life in spite of the loss, or maybe because of your love. With diabetes, I see it being similar in that even though it’s hard — and it never stops being hard — you learn to live with the difficulty, you learn to live in the difficult, and you learn to live through the difficulty.

You learn to live differently, proudly, fiercely. And I can’t think of anything more hopeful than that.

Noncompliant Diabetics Have More Fun

I was doing some research on a new project when I happened to stumble upon an old blog post that I wrote many, many moons ago — we’re talking 2006! — and I thought it would be fun to bring it back around. 

And just to clarify: yes, this is a joke! Please don’t send me hate mail!

 

Noncompliant Diabetics Have More Fun

 By Nurse Sardonic and Nurse Mordant
St. Jude’s Sacred Heart Medical Hospital of Mt. St. Cedar Sinai

A noncompliant diabetic.

Is it really such a bad thing?

Let’s face it. Life is short. Taking care of diabetes can be a real drag. So why live your life worrying about eating right and exercising regularly when you’re going to die anyway? You should spend as much time as possible having fun. Compliancy is for people who don’t have anything better to do.

Here are some tips to make diabetes less of a focus in your life:

  • Whenever possible, use the way you physically feel as a measure for what your blood sugar level is.
  • Whatever your blood sugar level is, try to keep it there for as long as possible.
  • If you are low, you should always eat until you feel better.
  • The bottle of strips truly is infinite. There is never a need to grab another bottle before leaving the house. It also applies for insulin.
  • Lancets can used as many times as possible. Some things just get better with age.
  • Cookies and ice cream are called treats because they treat you good. Why give that up?
  • Exercise can cause lows.
  • A1cs are like grades. The higher, the better.
  • Logbooks just take up space anyway.
  • If it says to take your medication with food, a brownie is food.
  • An apple a day keeps the doctor away, but a cupcake a day keeps a smile on your face.
  • Getting a solid 8 hours of sleep is important. Better make sure you aren’t going to go low with a nice big snack before bed.
  • Is there a doctor in the house? Not in your house he isn’t. So why should you listen to him when he tells you what to do at home?
  • You are what you think. If you think you are 104, then you must be.
  • Testing is a sign of weakness.
  • If a little is good, a lot’s better. Always round up with your insulin.
  • Tired of being nagged by your empty pump? Fill it with water to quiet that annoying beep.
  • If your blood sugar didn’t come down the first time you bolused, it doesn’t mean you need to change anything.
  • Don’t be mean to your fingers. Prick them as infrequently as possible.
  • When your meter says “HI,” be nice and say “hello” back.
  • Doctors say that a cure is five to ten years away, so by the time you have complications, they’ll have a cure!
  • A blood sugar in the 80s or 90s is awfully close to a low. Better be proactive and have a cookie!
  • On Foot Care: If you can’t feel them, they must be fine.
  • Your doctor is going to yell at you no matter what you do, so it doesn’t really matter what you do or how often you do it.
  • It’s all about which game you are playing. Think of it this way, 100 is a mediocre game in golf, but a 300 is a perfect game in bowling! Just change games!
  • If you don’t like your current blood sugar reading, just shuffle the digits so they look nicer.
  • Why worry your friends and family with something they can’t fix? Better keep your diabetes to yourself unless they accidentally see you giving yourself an injection.
  • If your friends see your medical supplies, just tell them you are a part of a confidential military experiment and you’d tell them, but then you’d have to kill them.
  • Snack on celery or carrots when you feel low. It will distract you from the symptoms and you won’t gain weight!
  • Alcohol lowers blood sugar, so you don’t need to take injections for food! Bottoms up!
  • Like the doctor always said, if it hurts to do something, stop doing it.
  • Trying is just the first step towards failure.

You’re All Awesome

Here’s the thing. I really hate — okay, that’s a bit strong — I really don’t like posts that fish for blogger recommendations because invariably it becomes a bit like a popularity contest of who is most loved. And even though I was mentioned by a couple awesome bloggers, it’s always leaves a bitter taste in my mouth because I see a lot of repeated names and I can’t help but think about all the other bloggers who weren’t sparkly and bright enough to get mentioned as an “awesome new find.”

So in order to not be completely hypocritical, I’m not going to answer the question.

Instead, I’m going to say a big thank you to everyone who read my blog this week (whether you commented or not) because creating those connections (whether I know about them or not) is what diabetes blogging is all about to me. I’m here, whether I know you personally or not.

Although I do happen to really like getting to know new bloggers and I had a blast subscribing to everyone who participated in D-Blog Week. I may not have commented on every post (although I tried to comment on at least one post per blogger!), but I plan on continuing to read and try to catch up over the next week or two. If you looked at my RSS feed reader right now, you’d probably think I subscribed to the entire blogosphere… and you might be right!

When I first started blogging ten years ago, there were about eight diabetes blogs. And I think half of us are still blogging (me, Kerri, Scott Johnson and Amy). Over the years, I have seen dozens — nay, hundreds! — of diabetes blogs come and go, so it can be really tricky to keep up with who is new. That’s why I love D-Blog Week so much because it gives me a chance to catch up with the latest and greatest of the D-bloggers who are currently plugging away at not only managing their diabetes, but spending the time to share about it too.

Anyway, my point is that if you read my blog but you’ve never heard from me on your blog, please leave me a comment introducing yourself! I would love to add you to my feed reader but there’s a chance I just haven’t stumbled upon you yet. I find most of my D-blogs through comments, both here and on other blogs, and I know a lot of other bloggers are the same way. So that’s my advice for continuing to grow your blog after D-Blog Week! Hope to see you around!

 

An Unexpected Career

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If you have been blogging for a while, what is your favorite sentence or blog post that you have ever written?  Is it diabetes related or just life related?  If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?  (Thank you Laddie of Test Guess and Go for suggesting this topic.)

~*~

Have I been blogging for awhile? Have I been BLOGGING for a WHILE?!

While this little blog is only a mere two years old (I launched it during Diabetes Blog Week 2013 and it celebrated its second birthday on Tuesday), I have been writing about diabetes for almost 15 years.

I have written hundreds of blog posts and dozens of articles about this stupid disease. I wish I could remember something as specific as a particular sentence, but there are just too many. However, last year a reader rather liked this sentence: ““The grass isn’t always greener on the other side. Sometimes it’s just another shade of crap.” I don’t know if it’s my favorite, but I think it’s pretty apt for a lot of different situations! That being said, I do have a couple of memorable publications that I can reflect on.

I will say that one of the blog posts that got the most attention (by way of comments) was my post on DiabetesMine called “Losing Faith in a Cure.” I wrote it after midnight in my living room, rather stream of consciousness actually, and then immediately sent it to Amy to see if she wanted to use it. Some of the comments ended up deviating into the “Big Pharma doesn’t want a cure” conspiracy but I do not believe that. I don’t believe in a Big Pharma conspiracy, at least not to the extent that most people think. But that doesn’t mean I think there will be a cure any time soon. I still don’t.

Another favorite thing I’ve written is an article on diabetes blogs for Diabetes Self-Management magazine. It was one of the first things I wrote for a diabetes publication, and it was one of the first times I got to write about my friends. The website says I wrote in March 2013,  but it was published in their magazine a lot earlier than that. I believe it came out in late 2007 or early 2008.

In January, I wrote up a little post reflecting on my favorite posts from the past year (so, 2014). If you want to look at some more recent favorites, you can check that out.

I started blogging because it was a natural extension of things I was already doing. I had already been writing about diabetes on a website that I created, but I wanted to take it to a more personal level. While I love reporting about diabetes and educating people about what’s going on in the world, I also like having the ability to share my own little discoveries. Even though we are all sharing this experience of living with diabetes, our own journeys and our own perceptions are unique. I have learned so much over the years from knowing other people with diabetes, and hopefully you’ve learned a little something from knowing me.

Memory Lane

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Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

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keep-calm-because-everything-changes-1The theme of changes has me going on a trip down memory lane. I’ve had type 1 diabetes for 21 years, and there are some people in the diabetes community who have known me almost that entire time. I went to diabetes camp the summer after I was diagnosed, and I still know people from that first summer (in fact, I interviewed one of them — Clare Rosenfeld Evans — in the latest issue of Diabetes Forecast!).

Twenty one years is a long time. There are not many things that I have been doing longer than that. Although anytime I’m around people who have had diabetes for forty, fifty, sixty (etc. etc.) years, I always find myself sheepishly chastising myself with “You know nothing, Allison!” ala Game of Thrones.

Anyway, a lot has changed since I was a wee little lass, getting diagnosed with diabetes. Since most of you didn’t know me then, I was diagnosed on January 27, 1994. Yes, I know the exact date because we have celebra — well, marked the occasion — every year since then. So it’s an easy date to remember. When I was diagnosed, I was on Regular and NPH insulin, but Regular only last for  a year (maybe two?) before Humalog became the new It Drug. I swear, Humalog is to Regular what Smart Insulin is to… everything. I mean, you’d think they’d cured diabetes. It was supposed to be this saving grace for all mankind.

LIARS!

Not that I’m bitter or anything.

Anyway, a few years after that, in the summer of 2000, I was approaching FIVE injections a day. My doctor gave me the ultimatum of a lunchtime shot at school (Nooooooooo!) or the insulin pump. He was a huge advocate of insulin pumps and thought it would be great if I went on one, even though I was completely against it. I had a couple friends from camp who were on the pump but I didn’t want anything attached me.

“I don’t want to be reminded that I have diabetes!”

Right, because diabetes is just so easy to forget.

I finally gave in because taking a shot at school somehow equated in my 15-year-old brain as the ABSOLUTE WORST EVER. I’m still not sure why or how I came to that conclusion but there you go.

First I went on a Medtronic 508. It pretty much did nothing except give you the basal rate and allow you to take a bolus, but it didn’t tell you how much to take, it didn’t connect to a glucose meter and it certainly didn’t have CGM capabilities because that wasn’t even a thing yet. Yeah, that’s right, you little newbie whippersnappers. We didn’t even have a bolus wizard calculator!

Back in my day, we had to bolus in the snow, uphill, both ways! 

That lasted for a couple of years, and then the Medtronic 522/722 came out and that had the bolus wizard calculator, the saving grace of everyone who can barely add single digits together. The Paradigm came out awhile after that which had the CGM capability, and that’s when I finally started using a continuous glucose monitor. Because why not, right?

Well, I’ll tell you why not! It was a piece of crap. A stupid, horrible piece of technology that lulled you into a false sense of security and then smacked you with reality when you least expected it (usually at 3 in the morning). So that didn’t last very long. In fact, I didn’t even use the CGM for the most part. I didn’t use a CGM — a Dexcom — until much later, when I went on the Omnipod.

Going on the Omnipod actually happened after I decided to go Lantus. Well, deciding to go on Lantus makes it sound planned. What really happened is that my Medtronic Paradigm pump kicked the bucket while I was at a wedding in Phoenix in April 2012. Luckily, my brother-in-law is a doctor, and despite also being the father of the bride (!), he kindly called the local Walgreens a mile away so that I could, you know, not die.

Lantus for a couple days while I waited for a new pump turned into a week off. And then it turned into “Well, when the bottle is empty, I already opened it.” Which then became “until my next A1C.” Then I finally just up and admitted that I thought pumps were stupid and I WAS NEVER GOING BACK.

Okay, that’s a lie. But I was pretty happy not being on a pump. My pump sabbatical lasted until I remembered all the reasons I don’t like shots (they hurt, they’re inflexible, you have to remember to bring your stuff with you all the time). Of course, trying to decide between shots and a pump was sort of like choosing between death by poison and death by firing squad. End result is the same, they’re both pretty painful and… do I really gotta?

So I took some time to investigate my options with pumps and I settled on Omnipod in August 2013. It seemed the closest to shots because you didn’t have to attach a pump anywhere. What is ironic is that for the longest time I really didn’t like the Omnipod. I thought it was really big and couldn’t figure out why you would want to wear that on your skin. It seemed like it would so heavy and uncomfortable. I also thought the sales reps at the diabetes conferences were super rude and aggressive. But lo and behold, it actually worked out the best for me. I’m marking two years on Omnipod in August!

On top of the traditional methods of managing type 1 diabetes — read: insulin — I also tried a few other therapies. The first was Symlin, which I tried for about a month during my junior year in college. But I realized I hated that it was another shot, I hated that I couldn’t figure out how to properly adjust my insulin at meals, and I hated having low blood sugars that lasted forty-five minutes. The next treatment I tried was metformin, and that was in 2010. That last for a few months. It helped me take less basal insulin, but it also meant swallowing a horse pill which I was not a fan of. So that didn’t last long either. Then in June 2014, I went on Victoza. I’m still on it, although I’ve had some digestive issues because of how it slows down digestion so I have to be careful with how much I take. I’m not sure how common the side effect is, but I get enough of a benefit on it to keep taking it.

So let’s review:

  • 21 years of diabetes
  • Five endocrinologists (first ped endo, second ped endo, college endo, NYC endo, Minnesota endo)
  • Three Medtronic insulin pumps and one Omnipod insulin pump
  • Plus 16 months on Lantus
  • About forty glucose meters (I’m kidding… maybe)
  • Three adjunct therapies and counting…

That’s a lot of change, right? Maybe, maybe not. Obviously people who have had diabetes even longer have seen even more change, and most of these changes aren’t huge leaps and bounds in progress. Part of that has to do with the fact that diabetes research and technology approvals just aren’t what they could be. Yes, there’s safety but Europe approves a lot more devices and medications a lot faster than we do in the United States and that’s really frustrating. I want to think of the U.S. as being innovative and cutting-edge, but that just isn’t true in the grand scheme of things. Twenty-one years and only four insulin pump upgrade/changes? That seems pretty pathetic. I’ve had like 10 different cell phones in half that time!

Hopefully the next 21 years will see a lot more progress, and a lot faster. In fact, progressing all the way to a cure would be mighty fine.

 

My Diabetes Closet

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Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)

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I’m just going to admit it: I’m a pretty messy person. If we didn’t regularly have people over to our house, this place would be a great candidate for Hoarders: Buried Alive.

But lately, my diabetes closet has been getting the shaft when it comes to a regular cleaning. Well, it honestly shouldn’t be a diabetes closet. It should be a diabetes shelf. That’s really all the room I need for my diabetes supplies. And yet this morning, if you opened the door to our hall closet (which is where my diabetes supplies are kept, obviously), you’d see that there was a lot more diabetes supplies than linens.

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And most of this stuff is just garbage from previous set changes that I never take with me and don’t think to throw away in the bathroom garbage can that is literally five feet away. I just set the stuff back on the shelf and go on my merry way!

Anyway, I finally got my act together and straightened up all the supplies so now the closet looks semi-respectable (the linens still need work…).

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I’ve noticed several bloggers talking about old glucose meters and other supplies that they keep around. For a long time, that was me. I’ve received a lot of complimentary meters over the years because of my work in the DOC and I might use them a couple times and then toss them in the diabetes closet. I held onto them forever, moving them from apartment to apartment. But finally, when we were getting ready to move from New York to Minnesota, I decided enough was enough. I was not going to haul diabetes junk 2,000 miles just because! So I threw it away. Yep, all of it. In the garbage. Probably not the most beneficial or environmentally friendly decision, of course, but our move was pretty spur-of-the-moment and you gotta do what you gotta do. And let me tell you, it is such a nice feeling not having that stuff hanging around anymore.

So I suppose I’m not really a candidate for Hoarders. I’m just really messy…