Monday, October 6, 2014

A Minute.

Oh. Hey. Right. Blogging.

Things have been quiet around here (and by here, I mean "me on social media") lately, for a few reasons.

This is one:

Because when you say things on a stage that you had tucked away so deep inside yourself and had planned to just let collect dust; when you are so honest and earnest on that stage that moments after leaving it you have to escape the conference for a safe place to cry and shake and vibrate and then somehow collect yourself to finish out the day; when you invite the world into your head and your heart and know that it will live on the internet forever and ever...

you need a minute.

I'm taking several.

Friday, September 12, 2014

Exasperation Station.

Some days I really love my medical devices.

Can we talk about how terrifyingly Riddler-like that face is?

Today is not one of those days.

While my basal has been delivering just fine (I was shocked to see a mostly-straight line from overnight, hovering around 95), my bolusing ability has been stunted by some fault within my insulin pump's lineup. Ever since putting this cartridge in on Wedneday night, my pump has not been able to fully deliver a single bolus. Not of 10 units, not of 5 units, not of 2 units. No boluses.


I called Tandem's tech support, and their troubleshooting protocol asks me to disconnect at the leur lock to see if insulin is delivering before it gets to the tubing.

Here's the kicker: I see why they want to know this, but if I do this process I lose not only the 23 units of insulin in my tubing (I use the really long tubing), but also will have to prime all of those airbubbles that will be introduced into the tubing again, out. That's easily 53 units of insulin I'll be wasting, and I feel very uncomfortable with that thought. I don't like wasting such a precious resource. 53 units is more than a day's worth of insulin for a lot of people.

If the design of your medical device requires me to squander my limited supply of the only drug that can keep me alive, you may want to rethink that design.

So I guess I'll be over here injecting for each meal and snack until this cartridge runs out.

Hashtag first world problem.

UPDATE: According to the customer service rep I've been working with, Tandem Diabetes Care is sending me a new "goodwill" box of cartridges and a prepaid shipping label so I can mail back the faulty cartridge for "investigation purposes". Good on ya, Tandem. Let's hope these work.

Thursday, September 11, 2014

Lightning Speed.

Just a wee little update on the wee little Rabbit:

Who in the span of a few days has become more "kid" than "baby", to my eyes.

(Also, please ignore all of the stuff on my kitchen counter. Cleaning hasn't been a priority.)

Wednesday, September 10, 2014

Medicine X 2014: People.

I spent four days on the Stanford University campus in Palo Alto, CA for the Medicine X conference, and what, now I'm just supposed to go back to "real life"?

Emotions, energy, and spirits ran as high as my blood sugar. The #MedXHangover is real.

Every conference. Every time.

So much to say, so little time to blog.

What stands out to me most, in this moment of reflection:
  • The swift manner in which handshakes gave way to hugs
  • A purposeful and welcome focus this year on mental health
  • The epitome of a "powerful patient story", this Ignite talk from epatient and fellow T1D Erin Gilmer - seriously some of the most gut-wrenching three minutes of the conference, and she wasn't even there in person which speaks to how much weight her words had/have
  • How grateful I was to see Scott Strange in the hallway immediately after I left the stage to bolt to a safe place to "come down", and for the huge bear hug he gave me before I erupted in tears
  • My ah-may-zing roommate Carly, who is a large part of the reason I had such a positive experience
  • Finally meeting super-human Susannah Fox in person
  • Seeing our diabetes community represented so well in sessions like Dana's (and Scott's) #DIYPS and Doug's Databetes project
  • How truly valuable the ePatient Advisory Board was to the ePatient delegates/scholars, and how generous they were with their time, their hearts, and their energy (to the point that I'm concerned that they all need a week-long debrief/spa vacation/nap to recover properly)
The common denominator that made this year's MedX so great? People. Their stories. The way "diabetes patient" and "arthritis patient" and "crohn's patient" all just became "patients" in one community. The way patients and physicians and students alike voiced their concerns, thoughts, questions, and visions. I saw so much respect; so much curiosity; so much drive.

I'm still processing it all, but this Just Talking podcast does a great job of capturing some ePatients' thoughts on the conference in a more crowdsourced kind of way.

Sunday, August 31, 2014

What Diabetes Awareness Month Feels Like to a PWD.

Also answers to "American Diabetes Month", "National Diabetes Month", "National Diabetes Awareness Month", and "November".

Wednesday, August 27, 2014

Diabetes Stigma on Mashable.

When I think about what we can do to improve the psychosocial health of people living with diabetes it always comes back to this, for me: share your story. Even when it feels like you're saying the same things again and again, keep sharing. Keep talking. Keep showing. Keep living. Don't give up.

This is how we change the world for the better.

Tuesday, August 26, 2014

Giveaway: N-Style ID.

UPDATED: Congratulations to the winner - April! This contest is now closed.

When I was a CWD (child with diabetes) in the late 80's/early 90's, I had two options: I could wear the clunky, thick, stretchy metal bracelet whose links always seemed to trap my arm hair (and then rip it out when the bracelet shifted on my wrist), or I could sport a large (to a child) medallion around my neck that announced by way of bright red caduceus: OH HAI I HAVE A MEDICAL CONDITION!

And when I was a CSWD (college student with diabetes) (that's not a real acronym), I wore no external indication of my diabetes whatsoever. This continued into adulthood until I attended the Friends For Life conference for the first time few years ago, where it seemed that so many of the people I'd befriended and respected in the diabetes online community were being the sort of responsible adult that I merely pretended I was - they wore ID bracelets! And there were stylish options! Alright, alright, fine, I'll get one.

Or make one! (A medical ID joins my insulin pump and Dexcom CGM as Things I Didn't Want To Wear But Then I Saw My Friends With Diabetes Wear Them So I Guess I'll Try It.)

I still have that original bracelet; the engraved nameplate often switched between bracelet options. I thought I'd be annoyed with making my diabetes "visible" by wearing medical jewelry, but I'm not. It actually feels nice to know there's a little bit of "here's what's up" hanging out on my wrist in case I get into a situation where I can't speak for myself. And while I once believed that wearing an insulin pump would serve as a pseudo-medical ID in case of an emergency, that isn't actually the case - an EMT will look for medical ID jewelry; they're not necessarily going to look for an insulin pump. (And what would that have told them, anyway? No name or medical condition specifics on that puppy!)

In the spirit of "I'm glad I started wearing medical IDs again", I'm looking to share the love. N-Style ID (whose founder has a daughter with T1D, and coincidentally the same company I bought that first "medical ID as an adult" bracelet from) contacted me, asking if they could send me one of their bracelets - but since my N-Style ID is working just fine I'd rather pass this gift onto one of you.

You can win one of the three designs I have pictured below ("Hoot", "Light Blue Rubber", or "Camo"):

There will be one winner, and your bracelet's ID plate will be engraved however you wish. Your bracelet will be shipped directly to you from N-Style ID.

Use the Rafflecopter widget below to enter this contest and make sure to leave a comment on this blog post answering the following questions: Do you normally wear medical ID jewelry? If so - what do you wear? If not - why not? Bonus entries may be earned by liking the N-Style ID Facebook page and following them on Twitter!

This contest will be be open for 48 hours; I will pick a winner Friday morning. This is not limited to U.S. residents - all are encouraged to enter.


a Rafflecopter giveaway

Tuesday, August 19, 2014

"Keep Going."

The minutiae of my diabetes life is looking pretty blurry lately - it's less "paying close attention" and more "auto-pilot".

I dipped my pinky toe into the CGM in the Cloud waters last week by downloading Chromadex, and thereby downloading (for the first time, at home) my Dexcom G4 CGM data onto my Macbook. It's hard to believe I'm doing well when those pie charts are predominantly lemon.

But, as a famous fish once said, I need to just keep swimming. It may not feel comfortable or look pretty or get me very far, but it's worth doing.

Or, another way: just keep going.

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(You can find the photo set for these "Words of Hope" on the You Can Do This Project Facebook page.)

Tuesday, August 5, 2014

#MedX Global Access Program; Ignite Talk.

Chris was the reason I applied in 2012. I had never heard of Stanford's Medicine X conference before, nor had I known they were looking specifically for patients to attend their conference. "You should apply for this", he said - which baffled me. Me? Stanford? Medical conference? I wouldn't fit what they were looking for, surely. No, this was for someone else more official; more visible; more involved; more professional. Thank you, though.

The last possible date in the application period came and I realized that there was no harm in applying. I raced through the application. I was so certain that they would not pick me, but at least I could say I tried. No regrets.

But then, plot twist! I was selected for their ePatient program (and offered a scholarship that would cover the costs of my attendance, which was the only way I could attend, financially). My nerves on the flight there and throughout the first day were so intense that my whole body felt like one big vibrating lump because STANFORD and patients sitting in the front of the room and so many important people that I only knew through the internet and what am I doing here. I felt like an impostor. What am I doing here?

But then the conference began, and I increasingly began to understand.

image courtesy of Kerri

This conference that focused on "the intersection of medicine and emerging technologies" brought together every stakeholder in healthcare - but most especially, it brought together patients from a plethora of different conditions and communities. I felt so moved by the stories of my fellow patients; those ePatient Ignite talks were by far my favorite aspect of the conference.

And now, I get to return to Medicine X this fall (with limited scholarship help, this time) and deliver one of those talks myself. It may come to no surprise to you that the focus of my Ignite talk will center around the emotional impact of living with a chronic illness.

You can check out the 2014 schedule here (and for those of you in the diabetes community, you'll be pleased to know that we are well represented on stage and in the ePatient program).

If you'd like to watch the conference but can't make the trip to Stanford's campus, you are in luck: you can virtually "attend" the conference by using the Global Access Program. It is free to use, but you have to register for it, so go do that.

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!