Thursday, July 31, 2014

Results: The Emotional Impact of Wearing an Insulin Pump.

A week ago, I asked those of you who wear one to tell me what you wish someone had told you about how insulin pumping affects you emotionally, and the responses were just as diverse, thorough, and sometimes surprising as I'd hoped they would be. Thank you, everyone!

Sifting through all of the responses, I noticed some common themes.

If you're thinking of trying an insulin pump, you might want to know that:

You may encounter misconceptions from others.

"I wish someone had warned me that I would [...] get frustrated with people assuming that I don't have to do anything anymore because the pump 'just does it.'" - Rachel

"I think it's a good idea to have a child practice answering 'What is that?' kinds of questions in a confident and concise manner. B. once overheard someone saying (about him) 'I HATE that kid. He thinks he's so great because they let him use an iPod during school.' One of B's friends told the hater it wasn't an iPod, but a medical thing. 'It's for his diabetes!' But since there's not always a nice friend around, some practice would be great!" - Katy

"While I don't think there has been a huge emotional impact on me directly related to wearing my pump, I would say that one thing I didn't consider was that I was making my invisible disease visible. I get a lot more questions about diabetes while wearing a pump than I do when I'm not wearing it or when it is not visible. I don't mind this though, as it is an opportunity to dispel myths and address people's curiosity." - Whiniest

"I always have people ask me what is that. Always seem to happen mid sentence of a conversation. "So we are going to shoot at this loca... what is that?" That can be very jarring and embarrassing if you don't want your diabetes to be announced. Preparing for that eventual discovery can be a good idea. That way your emotions are not shaken and you can have a witty comeback or little speech about what it is." - Jillian

Wearing an external medical device may take some getting used to.

"People should be prepared for the odd feelings - at first - of having something attached to their body ALL THE TIME, and that they will have to accommodate with clothing, etc. The benefits far outweigh this, and I pretty much forget it's there so it doesn't bother me any more, but it did take some getting used to!" - Anonymous

"I don't know about the emotional impact, but learning more about the practicality issues being attached to something 24/7 would have been helpful. (E.G - sleeping, how to wear dresses or clothes without pockets, intimacy, swimming, etc.)." - Jen

"The frustration of having to plan out your wardrobe for the week based off where your infusion set is. Also, being told how to spot a leak would be good." - Anonymous

"I'm not sure the emotional side of pump-wearing is different from any method of tight control. However, I do hate the weight & bulk, constantly shifting it according to an activity, and catching loose tubing on doorknobs, etc. OK, on second thought, there IS more stress. If it didn't provide more flexibility adjusting insulin to activity & better control in conjunction with CGM (also another stressor), I would return to the pen in a heartbeat." - Cat

"I've gone through pump hiatuses that are a direct result of just being burned out and frustrated with
the process of changing my infusion sites. The ordeal of having to switch sites, even when I don't want to, and sometimes hitting bad spots or wondering if it will hit a nerve or muscle (shudder)... I've taken breaks because it got to the point where I just couldn't do it anymore." - Mike H.

"I wish someone had warned me that I would be constantly concerned about my pump coming detached from me." - Rachel

You need to give it time.

"I would to tell someone considering a pump to know about the how difficult it can be to be patient and wait for the changes to kick in before saying I give up. It's not easy even though this little gizmo attached to us can make life easier sometimes it makes it harder." - Maria

"The pump is not magical. It won't cure all your problems and lower your a1c overnight. It takes work: basal and bolus rate adjusting, and is only as good as the time and effort you've put into programming it. ( that mean?) I think we put such high expectations on a pump, and we get so excited that it'll make our lives all perfect. But it's still us trying to control numbers. Just with a little computer." - Holly

"Things that I would have liked to have known is that you don't have to deal with all of the advanced settings of the pump on Day 1, and some of them not ever, depending on how you choose to manage your life on insulin. I remember when I first went through orientation with the pump, I got really overwhelmed by the information overload and had to say, "Look, can we just set the basal rates and you show me how to do a single bolus and see insulin on board? And turn the alarm off? I'll figure out the rest later." And I did, in my own time, as I needed it. There are still features on my pump today that I don't use, and I've been pumping for... doing math on my fingers... 10 years? Holy cow. Anyway, it is good to know now that I can make the pump fit my diabetes style, and what works for me. And that's okay. Even if it doesn't necessarily take advantage of every feature on the device." - Martin

"Some stuff I had read made the transition seem like a breeze, and while I got to grips with the basics/general attachment thing pretty quickly, I reckon it was at least a full *year* before I really felt comfortable with my little android appendage and began to see what all the fuss was about in terms of improving BGs. Some of those first 12 months were not the easiest and I know I'm not the only one who has been tempted to lob my pump out of the window in the early days." - Mike K.

"I've only been pumping a little over 5 months after 3 yrs on MDI. I wasn't prepared for the lack of

sleep getting my night basals set and adjusting. Fast acting insulin as your basal acts differently than Lantus. It seems to take longer for high numbers to come down with all fast acting (YDMV) my first a1c was no different, [...] but I tend to be a little conservative with insulin because it is a little scary, I used to be afraid of it, now I say I have a healthy respect for it." - Debra

You might experience some "data overload".

"I think what was emotional for me was getting too obsessed about always checking numbers. When using a CGM with the pump, I found I was testing MORE because I wanted to be sure I could really trust it. I guess you eventually move past that." - Rachael

"After almost 20 years of injections I knew what that felt like, but early on with a pump I just had no idea whether this, that or the other thing 'felt right' or what to do about it if things were going a bit off kilter. How aggressively to correct... How long to leave it... When to wait and see... That would have been a lot more difficult if I'd not known it was coming as part of the package." - Mike K.

You might really dislike it - or, it might not bother you at all.

"It's okay to hate your pump some days because the pump clip is such a PIA." - Anonymous

"Less hugs from husband and kids , cause they're afraid of ripping out my site." - Anonymous

"I think it depends on your age. The transition was much easier for me because I was older (48). But... I think any kind of follow up with a new pumper (after a month, two months max), with answers tailored to that individual's circumstances, would be extremely helpful. Wish I had that." - Stephen

"Honestly, I was so excited to be off the 12-15 injections a day I was doing on MDI that my emotions upon getting the pump can be adequately described as 'OHEMGEE THIS IS AWESOOOOOMMMMMEEEEEEEEE!!' After coming off the pump for a few years due to losing my insurance and getting back on it after getting insurance again, my thoughts are still the same." - pavedsilverroads

"I resent when people tell me how I might feel, how I should feel, or how I should behave in response to a change in my life - especially when such things haven't happened yet! The stuff that goes through my head -- nobody knows it better than me, and nobody is qualified to predict how I might feel about a given circumstance. I don't think that emotional counseling, preparation, or whatever should be mandatory. Emotions are a sensitive issue, and if someone wants to discuss them or not discuss them, it should be their own choice, by their own initiation, and on their own terms." - Scott 

"[...] Getting a pump helped me become more open and comfortable with my diabetes." - Laddie

"It's okay to be frustrated with it. Just because it's new and shiny doesn't mean that you have to love it immediately. If you decide it's not for you after giving it a fair shot (and that changes from person to person and doc to doc), it's okay to go back to shots/pens/inhaling/whatever-delivery-method-you-prefer." - Maria

* * * * *

If you have any additional thoughts that weren't covered above - please leave them in the comments!

Tuesday, July 29, 2014

So It Goes.

A reenactment:

Saturday morning, fasting:


::mumbles profanities under breath; pulls out meter::

Meter: 528


Sunday morning, fasting:

CGM: 285

::grumbles; pulls out meter::

Meter: 265


Monday morning, fasting:

CGM: 312

::profanities again; pulls out meter::

Meter: 249


Tuesday morning, fasting:

CGM: 332

::dramatic groan; boluses off of CGM reading because this is now four mornings in a row; then pulls out meter::

Meter: 175

Dramatically looks at ceiling as she contains her rage

Monday, July 28, 2014

Review and Giveaway: aDorn Designs.

Update: this contest is now closed! Congratulations to the winner - Kristina!

Y'all know I love my diabetes accessories, and I will not admit de-tweet (groan, I know, sorry) even when a manufacturer discontinues a favorite. So where can one now look for a stylish, secure, coated-fabric case for their diabetes paraphernalia?

Oh, I know exactly where:

LeAnn from aDorn Designs just came out with a new diabetes bag called the "Elite Collection" clutch, and was kind enough to send me one for review earlier this summer. The condensed version is that while the interior could be improved slightly, this is a pretty solid bag that I plan to keep in my regular rotation. 

  • It has plenty of room for my Verio meter, vial of test strips, lancing device, Humalog pen and needles, and other random bits
  • The outer material is ideal for meter bags: a coated cotton fabric that is unfazed by blood smears (seriously, love this fabric, can't say enough good things about it)
  • Several interior zipper compartments of universal sizes, like so:
  • Reasonable price point ($35)
  • Exteriors that feel modern/stylish/incognito instead of medical/utilitarian/obvious

Could Be Huzzah Someday:
  • While the clutch was rather lumpy-looking for the first day or so of having my stuff in it, the exterior eventually realized what was happening and chilled out - it's only super-lumptastic for the first day or so and then things stretch out (this is probably just a characteristic of the fabric and not a flaw in the making of the bag)
  • Slightly bigger than what I'd personally want to use on a daily basis, but everyone has different tastes so this really should be more of a "heads up" than a not-so-good
  • Let's make the interior fabric more stretchy, as to hug things a little better

If you'd like to claim one of these clutch bags for your very own, you are in luck! I am giving one away! You can pick from either of the designs shown above, and will need to respond to the eventual email I'll send you with a shipping address. Open to err'body, not just U.S. residents. You can earn up to two entries, using the Rafflecopter widget I have below: one entry for leaving a comment on this post that tells me why you want to win (and who you want to win for), and one entry for liking the aDorn Designs Facebook page.

a Rafflecopter giveaway

And if you'd like just to straight-up purchase one, LeAnn has kindly created a discount code for Texting My Pancreas readers that will deduct 15% off of your entire order: enter 15off at checkout. Go browse!

Disclosure: aDorn Designs sent me a free product for review, and to keep/use afterwards. I agreed to share whatever my thoughts would be here on TMP. I was not paid for this review and my opinions, thoughts, and photo text enhancements are, as always, solely my own.

Thursday, July 24, 2014

The Emotions Of Insulin Pumping?

Update: you can find the results of this crowdsourcing post here.

Chris brought up an interesting point in his post earlier this week: when a person starts with their first insulin pump, there should be emotional training that happens along with the technical training you receive. In addition to learning how to set your basal rates and where the setting is for BEEP BOOP BEEP volumes, you should also get a heads up on how pumping insulin may impact how you feel, what other people might say to you, and things you wouldn't think about ahead of time but would be "good to know" as you head into the cyborg life.

You feel me?

If so, I'm asking for your input: if you have any experience involving using an insulin pump, what would you want someone considering one to know about the emotional side of using an insulin pump? Please leave your advice/anecdotes/sassy wisdom in the comments, and I'll compile them in another post. Thank you!

Wednesday, July 23, 2014

A "Fakebetes Challenge".

Do you know Michelle Litchman? She's a Utah-based nurse practitioner who is very active on social media and she does a lot of good work for people with diabetes. Among her many brilliant ideas lives the Fakebetes Challenge, where healthcare professionals pretend to "live with diabetes" for a week by taking saline injections, doing fingerpricks to check their bloodsugars, counting their carbohydrate intake, and corresponding via text message with a real-life diabetic.

A few weeks back, I was one of those real-life diabetics.

Michelle's rules of this challenge were as follows:
  1. Kim will decide when the fakebetes challenge will start. Since no one gets to choose their diagnosis date, Whitney doesn't get a say in this.
  2. The challenge will last 1 week.
  3. Whitney will be expected to test her blood sugar before meals and at bedtime. There may be times when an additional blood test is needed in the event of hypoglycemia or hyperglycemia issues.
  4. Whitney will be expected to take her saline injections as follows: 22 units of "long-acting" saline once daily, 1 unit for every 8 carbs plus a correction of 1 unit for every 30 points greater than 130 of "rapid-acting" saline. Adjusting insulin as needed for hypoglycemia, exercise, etc. Whitney is to notify Kim of what dose she took, how many carbs she ate, and if she is exercising.
  5. Kim will be expected to feed Whitney blood sugars to work with. These may be real blood sugars she is actually experiencing, or made up. She may choose to decide to send Whitney different readings based on what Whitney is doing. Kim may also opt to send symptoms instead of glucose readings (ie. feeling shaky, sweaty, etc.) which should prompt Whitney to check her blood sugar.
  6. Please connect so you can decide the best way to connect with each other. This may be by text, email, facebook IM, etc. Whatever works for you.
Whitney, who is a newly-minted RN, went through some of the mechanics of diabetes for one week - pricking her finger and checking her BG using a borrowed glucose meter; injecting herself with saline (in lieu of insulin); keeping a written log of everything she ate. We used my BG readings to determine her doses, while using her carb counts and exercise plans.

This week-long exercise gave me opportunities to bring up some of the quirks of my own life with diabetes - that even small amounts of exercise can cause significant drops in my BG; that I am extremely insulin-resistant while sleeping; that some foods contain what I refer to as "sneaky carbs".

I did my best to share some curve balls, and even I felt a little burnt out on diabetes management after a week of this constant communication. But there are some things that even a week of pretending to have diabetes can't really recreate, like:
  • experiencing exactly 1.8 seconds of rage-filled panic after you pull your car into the parking garage at work because you think OH MY GOD I FORGOT MY INSULIN PUMP AT HOME but then realize OH MY GOD IT'S JUST IN MY OTHER POCKET 
  • the hassle of remembering to keep all prescriptions filled on the first possible day so that you can build up a little bit of a cushion
  • the gamble of not treating a BG of 74 when you know you're eating lunch in half an hour
  • the agony of an "Er 5" while using one of your last test strips
  • the labyrinth that is trying to figure out why you received a medical bill three years later
  • wondering "what is true and what is foreign when everything is covered in the same gray dust"
I have great respect for any health care professional that voluntarily signs up for a challenge like this - even if it isn't a full (or, arguably, even a half) picture of what living with diabetes is really like, it's a glimpse that many of their peers do not have the chance (or desire) to experience. Whitney was so open to learning and asked great questions, and I hope she found our interactions worthwhile.

I would encourage future healthcare providers to take advantage of opportunities like this, and I hope that this type of make-believe helps to shape their future care with the empathy and understanding that their patients most certainly will need.

You can find Whitney's point of view on our Fakebetes Challenge today on Michelle Litchman's blog.

Tuesday, July 22, 2014

Pump In The Wild.

Hey hey, it's #dblogcheck day! Go leave a comment on every blog post you read in the diabetes community today - even if it's just a simple, "Check!". Read more about it on A Consequence of Hypoglycemia.

We were just killing some time; Aaron pushing the baby Rabbit in her stroller and me right beside, walking up and down the sidewalks of a local shopping area. I was too preoccupied with being uncomfortably hot and staring longingly at the window of the Fossil store (they used to make great cases to house diabetes gadgetry, but apparently no more), I suppose. But Aaron didn't miss a beat.

Real casual: "Hey, that guy has an insulin pump."

A dramatization
My eyes darted around a few seconds before they landed on a loop of clear plastic, happily bouncing in the breeze and moving briskly ahead of us. This gentleman had so many gadgets on his waistband (maybe he worked security somewhere?) that I didn't even see a pump, but that tubing couldn't be anything else.

I almost yelled, "SHOW ME YOUR PUMP", but then realized 1. he may have no idea what I'm referencing, and 2. I wouldn't (comfortably) be able to reciprocate as mine was clipped to my bra and okay maybe kind of an awkward way to introduce myself.

And so I said nothing.

There's really no moral to this story, except to point out that it seems my husband's pump sighting skills have now surpassed my own.

Friday, July 18, 2014

Things I Like.

Happy weekend!

Monday, July 14, 2014

#MasterLab Debrief.

Many other people have already done a fantastic job of recounting what happened at the Diabetes Advocates "MasterLab" event a couple of weeks ago (video of the event is coming soon, I'm told): find a well-curated Storify of MasterLab tweets courtesy of diaTribe here and a thorough write-up at Diabetes Daily. I also dig this call to action from Christel.

And because everything was so well-documented by others who took more notes than me (which was actually everyone because I took zero notes and opted instead to just experience, engage with, and process it with the aid of a few tweets), I'm not going to try to do that. Instead, I'd like to tell you some of what I took away from the event.

(I want to emphasize, first, that I realize there are about 10,000 different things that need our attention when it comes to improving outcomes for people living with diabetes - but if we all pick one and work on that thing, we're moving the needle. And if more/all of us can also pick "speaking up to Congress", our united actions can have an impact on EVERYONE.)

#1: Our community needs unity and focus, now more than ever.

#2: If you're not angry, you're not paying attention.

Let that anger move you to action, but let's take care to not unleash that anger on the very people whose help we need to affect change.

#3: We need to get smart(er).

I've been spending more time wandering around the FDA's device regulation website lately, trying to educate myself more on how device regulation works, what things like 510k's are, and why some approvals take so much longer than others. I highly encourage you to do the same. If we want our concerns to be taken seriously by others, we need to know what we're talking about.

#4: Money speaks most loudly. Remember that as you frame your asks.

#5: We can learn a lot from advocates and activists in other health communities, especially HIV/AIDS.

Read the Back to Basics document; a roadmap for how activists changed the advocacy landscape in HIV/AIDS. Yes, it is 32 pages, and yes it is absolutely worth your time to read it.

YOU GUYS: If they could enact that kind of change with 30,000 patients, imagine what we could be doing with our 30 million.

#6: There has been no more perfect time to mobilize and act.

Get over to the Diabetes Action Hub, and let's get to work. Encourage your members of Congress to cosponsor the National Diabetes Clinical Care Commission Act if they haven't already - and THANK THEM if they have. (You can track the bill's progress through this site.) Send an email. Make a phone call. Compose a tweet.

I'm fired up; I'm ready; let's do this. Together.

Disclosure: Diabetes Hands Foundation, through the Diabetes Advocates program, covered the costs of my travel, conference registration, and lodging while at MasterLab and the Friends For Life conference through a scholarship I was awarded.

Wednesday, July 9, 2014

Suddenly, Bloggers.

The diabetes community is to hotel bars as Corgis are to the internet?

It may be a while before my brain unscrambles enough to write about FFL, so you'll have to put up with me posting the three photos I took at the conference in the meantime.

Tuesday, July 8, 2014

Jerry The Bear's Indiegogo Campaign.

Our friends at Jerry the Bear are launching an ambitious campaign today: to get a Jerry the Bear into the hands of every newly diagnosed child with T1D.

Go read about their Indiegogo campaign, and check out these video:

I love Jerry the Bear and I hope you'll considering helping them get a Jerry to every child living with type 1 diabetes.

If you have a child with type 1 diabetes, be among the first to get a bear by doing these things:
  1. Create an Indiegogo account.
  2. Use the share buttons below the video to share your referral link with your social network
  3. If 10 people contribute to the campaign using your referral link, you will be among the first to receive Jerry the Bear.

Monday, July 7, 2014


"I will help you, Mom. Let's unpack the rattles glucose tabs first."

The Friends For Life conference was great, but I really really really missed my kid.
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