Wordless Wednesday: I am Diabetes Punching Bag

Can you say bad infusion site?

So Much to Carry

Having diabetes inadvertently means carrying TONS of extra stuff around all the time or suffer some rather unpleasant consequences.

For my first decade or so of being a diabetic, the only thing I made sure to have with me all the time was my glucose monitor. Some luxury of trusting the school nurse, my parents, and friends meant that I was never really worried about carrying something to treat lows. And by the time I was in high school, I had a pump, which meant no lugging around insulin or taking shots. I made a point to leave some extra pump gear and some needles at the nurses office but never ever used ANY of it. Somehow, I was lucky enough to not see a clogged set or malfunctioning infusion site for the first 12 or so years as a diabetic. AND then things changed.

I started experimenting with different sites more. Travelling on the fly more. Paying more attention to my good friend, Diabetes. Having more bad experiences without extra supplies. Whatever the reason, I realized how important it was to carry more than just a glucose monitor with me.

So now, I try to carry:

• Glucose meter
• Lancing device
• Test Strips
• Continuous Glucose Monitor Reciever (Eggy!)
• 2 pump reservoirs
• 2 infusion sets
• An Extra Bottle of Strips
• 1 AAA battery
• Current Vial of Insulin (and an extra if it's looking low)
• A bajillion alcohol swabs (that I don't realllly use except for site changes [shhh!])
• A tube of glucose tabs (or a bottle if it's a bad day/big bag)
• Glucagon (usually there's one case in my backpack but I can't say it wanders out to dinner with me all the time...)

When I was a kid and we went on long vacations, I remember the green army pack looking thing that my mom put all my supplies in. It was pretty sturdy and seemed like you stuff enough syringes and other supplies to last me 2 months. But I hated that thing. It exemplified the idea that diabetes was ugly and just a burden to carry around.

Now that I'm older, I have purchasing power. I COULD buy whatever I wanted to hold this in. Coach. Nine West. Dolce & Gabana. (Alright, I'm kidding. If you know me, you know I'm no where near that trendy). In reality, I'm an eternal college student. I'm also really picky when it comes to bags and shoes. I like simple. Sleek. Elegant. The green army pack was never going to make it. But sometimes, my engineering side kicks in. So instead of buying a bag, I just macguyvered things around the house.

My favorite thing to carry supplies in is a tupperware container. Nothing fancy. Or blue. I ordered takeout sushi one night and the plastic container in was just the right size to fit all I needed. Plus, it's super easy to swap from my backpack to my purse to my overnight bag/carry on without losing any essential pieces. And the vain side of me loves that it's black instead of that ugly white plastic. If you were feeling crafty (or sticker-y), you could easily paint or wrap that clear cover to look cooler.

Large tupperware container filled with pump supplies!

On the inside of the large container

I was talking via Twitter to Mr. Mike Lawson (who's really cool if you didn't know) and he was wondering about something more manly and sleek to carry d-supplies around in. Since he's on multiple daily injections (MDI), there's a little less gear to tote around in some ways. I was thinking of other things to stick supplies in just in case tupperware isn't your thing.

The best thing I found around my apartment was my hard shell sunglasses case. I can't really remember where I got it from but it's pretty easy to stuff in the essentials (testing supplies, insulin, and syringes). There's tons of hard shell cases online and in stores and most are less than $30.

Sunglass Case, Small Takeout Container, Large Takeout Container

Small Container with MDI Supplies

Sunglass Case with MDI Supplies

Playing around with different things, I think the size of the case is most important and the limiting factor is really the size of your meter. Most syringes and vials of insulin are the same size. But really if your meter is big, your case needs to be large enough to hold it. A OneTouch Mini is pretty tiny but the only meter I had at the moment to test with. Also, I recommend any makeshift case be water proof/resistant, sturdy, and easy to clean. If making/modifying carrying cases isn't your thing, there are tons of cute or manly carrying cases out there to buy nowadays. Some even come with built in slots to hold syringes and vials! We'll see how long it takes me to graduate from tupperware...

Breaks and Vacations

I just finished my last exam of the semester today. Cell biology will never haunt me again unless I have to retake it (let's all cross our fingers for me!). Technically, I have the next four weeks off. In reality, I should spend some large portion of that time writing grant proposals, reading research papers, figuring out where I want to go in the future, and the steps I need to take to get there.

School vacations always threw me off. Either I'd want to do nothing but relax and then get bored of being a slug only to pick up a tutoring job or research position, or I'd have grandiose plans to read novels or build things that I couldn't during the semester and instead end up sleeping my time away.

I'm looking forward to seeing friends and family that I miss like crazy. To rock climbing with my old crew at least once. To sleeping for eight hours guilt free. To getting some exercise regularly on purpose. Oh yeah, and seeing my endocrinologist to check up on my diabetes, which makes me think of another kind of vacation...

For 10 of the 14 years I've had diabetes, I've never taken a purposeful break from my pump. Yes, I've squeezed in a few dozen shots of insulin when my pumps broken (which I think has only happened 3 or 4 times). And yes, I've occasionally taken shots to tide me over between site changes. With my recent adventures in rotating infusion sites (fairly unsuccessfully, I think), I've been thinking more about just putting my pump away in a drawer for a while. But the thought of that scares me, just a little.

My schedule is... well kind of a nightmare. It's inconsistent. Everyday is different just by the virtue of my classes and visiting lecturers and the nature of research. I've gotten used to being able to dial up or down my basal rates for stress or exercise and extend a bolus for crazy food combinations. I always thought being on shots required more... discipline than I have. Take a shot of long acting twice a day everyday at the same time. Take multiple shots of short acting for all the food consumed for meals and snacks. Which makes me wonder about how much I'd like popping out a pen or a shot when I take just one measely unit for those lectures with free snacks outside where I grab a tiny plate of melon, even if I just ate lunch or dinner is in an hour. It's easy when it's a button. Not so easy when it's a shot.

My mother would never understand why I'd ever take a break. She thinks that my insulin pump is the greatest thing since sliced bread and has always advocated giving pumps to kids even when they were hesitant to give them to teenagers. But I've been making my own decisions about diabetes for a few years now. That shouldn't really be a factor but it's bouncing through my head.

Just cause I'm taking a break from my pump (hypothetically) wouldn't mean I'm taking a break from Eggy (my CGM) so any fear of lows or highs from being on multiple daily injections should be nonexistent. Right?

Maybe I'm over thinking this, and it's just something I have to try. Or maybe I've been stuck with my pump for so long that I'm too comfortable to let go.

Vampire Infusion Sets

Yes, vampires can be cool. Vampire infusion sets are definitively not. If you're not fond of blood, then I don't know how we can be friends (not really, because I have all sorts of friends but read on). Mostly because little finger pricks for blood drops are involved between 4-15 (it feels like a billion most days) times a day for me. I have to warn you that if you get faint at the sight of gross things like blood, you DON'T want to scroll down (although even if you were, you would because I just told you not to).

I posted a few weeks ago about some issues rotating sites with my hips. Apparently, the same is true with my thighs. To be honest, I'm just having all sorts of new issues with infusion sites that make me want to go back to just using my stomach again. I'm fairly certain that the last site I pulled out was infected from the gooey stuff that oozed out of it and the raised . I'm used to seeing some liquid (I can only assume it's insulin) come back out when I pull out an old site (actually it happens sometimes with regular needles too). Most of the time, I don't account for it unless my blood sugar is rising/high.

What I've noticed is that any of my bloody (no, no like the English mean it) infusion sites usually take 6-24 hours and then they're fine. No more blood (not in the cannula, not on my clothes). Just the gross outline of it on the little gauze adhesive that surrounds it (see any of the pictures). This is what keeps me from tearing them out and putting in a new one. Because I don't think they're is ever a guarantee that it won't bleed (but I think its cause I dread putting in new ones). And it's not like a stab myself with one and it's gushing blood (cause if there were I might even do a glucose test with it for fun). It usually takes an hour before any blood starts showing and three before there's a weird pool of gunk on my infusion site.

I know that everyone says to pull out a set that is overly painful or bleeding. I can't say that they hurt. And to be honest, I HATE wasting perfectly good supplies. So is it worth it? An hour or two or twelve of a little uncertainty with my infusion set in exchange for a little less pain? I do it. I don't recommend it. The only thing I can recommend is trying to change sets in the morning or the middle of the day so you can push more insulin, because waking up at 262 mg/dl is not the way to start off any day. If you have any feedback, I'd love to hear from you. In the meantime, here are the gross pictures I mentioned (and no, they haven't been enhanced for total gross-ness):

Fresh and bloody infusion site after 24 hours

Bloody site after being removed

It's Been a While...

So I haven't written in a while. Not really for a lack of ideas or thoughts (cause if you ask, I have exactly 10 or so rolling around my head at any given moment), but more so a lack of time at my laptop, energy, and organization. Because 2 or 3 sentences makes a tweet and not a blog. And while I love bullet points, they don't help my writing skills blossom. But alas, my mind just breaks down from all the clutter rolling around in there.

I managed to pull out not just ONE, but TWO infusion sets placed on my thighs within exactly 3 hours of each other last week. I think there was something wrong with the adhesive after they ventured into the great outdoors with me for a night. But considering I typically "accidentally" tear out a site once every 6 months, I was quite angry cause I despise changing my infusion sites. Plus, it screws up my rotation schedules for "landing zones".

Another first for me (today in fact) was the first time I misplaced my insulin. I'm on a pump. I change my site & reservoir every 3/4 days, but I always keep my medical bag packed especially when I'm travelling (read DRIVING everywhere). I was panicking after I noticed that my Novolog was missing for the bag when my reservoir was running on EMPTY just after eating a large dinner at 8pm at my parents. I guess that as I was hectically putting in extra infusion sets in the bag, it rolled out. Insulin 5 hours aways doesn't help me now. Absent-vial-syndrome hasn't EVER happened to me before. Thankfully, the CVS by my parents is open til 10pm and they had enough in stock to fill my prescriptions. Crisis averted.

I'm on the hunt for a cool diabetes shirt that says "Even though I don't look sick, I still deserve a cure for diabetes" preferably before the Non-Communincable Disease Summit in NYC (I'm going and you should too! More info here!). Anyone know someone who sells one already? Otherwise, I'm totally hitting up http://diabetees.spreadshirt.com/ to make me one (because I really want to order half their website already). Anyone else interested?

Bad Sites

I feel like putting in an infusion site nowadays is like digging for gold: Random and nonsensical.

A few weeks ago, my CDE and I discussed potential alternates from my stomach. After having an insulin pump for about a decade (2 upgrades later, that seems crazy) and recently acquiring a CGM that actually works for me, I feel like I need to give my tummy a break. There are little white scars everywhere on my brown skin that make me feel like I'm artificially giving myself reverse freckles.

Anyway, now the outside edges of my tummy (aka my lovehandles [eww]) are reserved for the Dexcom and the infusion sets are wandering. I've been comfortable enough to try the back side of my hips. I was afraid mostly because I didn't think I was flexible to comfortably get the site in with the sil-serter (makes me think of soft serve ice cream for some reason [#takethatwendell anyone?]). It's awkward but I've gotten to work for me with one very large caveat.

I can only use my left hip. Every site I've tried (I'm up to 4) on my right hip has ended up being a vampire infusion set. After putting one in that seemed fine for the 10 minutes I was watching it, I went shopping today and found the following image awaiting for me in the dressing room mirror.

It's a little hard to tell, but basically that's a lot of blood that's crusting around somewhere where there should be any. That's definitely an infusion site fail. The little dot to the left of it is one of the earlier ones that bled out and left my blood sugar running high for about 8 hours overnight (reasons not to change infusion sites before bed). I thought human bodies were supposed to be relatively symmetrical. I just want it to work. I hate having to change them early. I also don't want to be worrying about not hitting a vessel in addition to worrying about not hitting scar tissue. Some part of my body has to play nice, right?