UNite for a Healthy Future

So yesterday was the UNite for a Healthy Future event at the NY Academy of Medicine / Central Park. And the only word I can keep coming up with to describe it is amazing.

When speaking to someone (a fellow PWD, a parent, an activist, I don't really remember who exactly [more on that later]), I was recalling the last time I had physically been in the room with many other diabetics. The last time it happened was maybe 3 years after my diagnosis and it was because my new doctor really wanted me to attend their support group. Unfortunately, most of the patients were much older or much younger and a little hard for me to relate to (I'll blame my youth & lack of experience cause I'm sure they were ripe with info). Despite attending a few fundraising activities like walks, I can't say I've really ever connected with another diabetic. I've been a diabetic for over 14 years now. Which means I've been sorely missing my fellow 'betes buddies.

Walking into a group of people and just being overwhelmed by this feeling of belonging was extremely cathartic and freeing. None of that means that I didn't spend the entire day talking about what I knew about diabetes, research, the FDA, human physiology, etc. But having other people there to help explain was really comforting. Not feeling strange to say, "Hey, I need to test first," was really bizarre for me after spending sooo much time being the only PWD I know.

To prepare for the day (and the at least 1.5 hr commute of walking, trains, and subways), I packed a large bag of snacks, extra clothes, and my diabetes supplies (I assumed I'd be outside and on my feet all day). What I really needed yesterday was a lot of water, a lot of energy, and a lot of glucose. Looking back, I wish I had packed a little differently but hopefully, this experience will help prepare for future diabetes outreach events.

So I was actually volunteering [for the awesome Isabella Platon @ IDF :)] at the event in addition to just being another person with D, which meant that I got to meet an extraordinary number of people that ranged the activism gamete (and forget their names regardless of how important & influential they are [sorry!]) while running around taking care of organizational things (what? why? where? when?). There was sooo much going on yesterday that there was actually a lot that I missed but I wanted to participate in.

The bullet point rundown & SUPER-brief recap of the events:

• Live Art Mural - All day creation of art representing different Non-Communicable Diseases (NCDs). The depictions were so creative, vivid, and enigmatic. I loved meeting/talking with Zoey Stevens but really all the artists were so curious about how and why diabetes affects everyday life.
• Children's Art Mural - Great event for kids lead by two art therapists including Lea Ann Thill.
• Bike Ride - Lead by Phil Southerland & Team Type 1, a group of 10-15 adults & kids rode a 1 kilometer track around Central Park.
• Big Blue Test Video Shoot / Walk - Walking around Central Park North handing out blue balloons and "woohoo"-ing for an hour while two awesome videographers captured our excitement and activism. Love knowing I'm helping to create something that will hopefully reach many people and do some good for the less fortunate all at the same time.
• Socamotion, Tai Chi, & Zumba - Enthralling and energetic ways to get your blood circulating, but unfortunately one of the things I didn't get to experience much (read: almost any) of.
• Information/Outreach Pods - Met lots of great people from the International Diabetes Federation, dLife, JDRF NY Ride to Cure, Living In Progress, TuDiabetes, and more. Everyone was super-welcoming, super-informative, and super-empowered.

Photos from the day can be found here and here! Unfortunately in all the craziness, not only did my phone die (with no extra charger in sight) leading to no awesome Twitter updates, but also I didn't manage to get any pictures that weren't requested by other people. But one of these days, I'll figure out how to multi-task a little more efficiently.

Laughter

If I didn't laugh about "misplacing" Diabetes (and real life) accessories, then I would probably still be hunting down my missing Eggy (Dexcom Reciever), my keys, or my sanity (I think that disappeared 7 or 8 years ago, but shh who's counting?). I walk in the door to my apartment with my keys, my cellphone, Eggy, and my tester in one hand. Recently, I lost my cellphone in a Kohl's while shopping through racks of clothes for something specific. The funny thing about all this is that I'm more likely to lose things while my blood sugar is dropping, which makes them harder to find. I sat down on the floor of the store, popped some glucose tabs, and 15 minutes later just as I was about to give up, on of the retail specialists found it! I laugh at how lucky I am. I laugh at where I find things (under bookshelves, in soccer fields, between seat cushions).

If I didn't laugh about my scar tattoos and hole-y fingers, then I would probably notice all the liquids that leak inadvertently. After having this disease for 14 years, I'm covered in all sorts of scars (my favorites [not] being my infusion site freckles), well beyond my non-D scars (I was a super-clumsy kid and had stitches 4? times). But I notice that not all pokes heal as quickly as you'd think. I love giggling at the double squirters on my fingers (aka when you prick and squeeze the stabbed finger only to notice blood coming out in two places [especially awesome when it's on opposite sides of my finger]). My infusion sites leak when they're just removed and when I decided I want to pick at the scabs. This doesn't include the number of times I've had a juice box leak or squeezed 3/4 of it out on the floor or my clothes in my eagerness for sugar. I laugh at all the stains. As much as I love the color white, I walk around like a stiff robot when I do wear it for fear of ruining a new outfit.

If I didn't laugh about the reasons people think I'm having a D-moment, then I would probably still be lecturing them sternly about all the awesome things I do with my diabetes. It's taken me a while to get to the age where I no longer get upset when people ask me if my blood sugar is okay. My teenage years were not my best years (and if they were for you, kudos for being in the minority). I would get worked up over something my parents or friends would say/do, which would promptly be followed by yelling or even the occasional crying fit (now those are reserved for sappy movies and little kids). They'd ask if my blood sugar was okay and I'd get even more furious. Diabetes does not possess me like a demonic spirit. It's just a disease. Yes, my emotions run wild sometimes because of highs/lows but they're still MY emotions. Instead of getting angry and letting a moment take over my blood sugar, I've learned to laugh and accept that at least they care. In the past few years, people have asked if my blood sugar is okay because I look "funny","tired", or "confused". 90% of the time, I'm okay. Which means 90% of the time I'm laughing at them. I laugh when my climbing partners try to convince me that I need to eat some fruit for sugar instead of just a handful of nuts. When my new roomie walks into my room and asks me if I need some juice whenever I look tired, I can't do anything but smirk. I've learned that teaching people about diabetes is a slow process for some. Diabetes has never stopped me from anything I've really wanted to do. Only I can hold me back and let's just say I'm not a fan of that.

This post is my September entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/september-dsma-blog-carnival/

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

Endo Visits and New Forgetful Starts

So. I saw my endo before I left my parents place to start my life at grad school with a "clean diabetes" record. Everything is up to date for a while and my HbA1c?

Pictures don't lie. I'm doing okay. There were somethings I should have probably asked about (primarily about my stomach) but I was to enamored by my great stats with less lows. I'm as healthy as I could be. More exercise wouldn't kill me but in terms of numbers and diabetes, I'm doing good.

My first day of classes went fairly well despite being exhausted from lots of driving with an 8:40 am class. I think I've talked about having diabetes quite a bit to my new classmates enough that they won't forget I have it. (Yes, I can eat that but no, I don't want some now; Yes those are glucose pills and yes I eat them for almost every one of my many lows; No I don't need some orange juice. I'm just annoyed with this homework). However, I will forget some of my diabetes essential and non-essential devices in random and sometimes untraceable places.

We decided to have our first study group on campus in one of the student dorms since they have much larger living rooms than my apartment. We eventually traveled from one room to another and finally figured out our homework woes. When I was getting ready to leave, I realized I didn't have Eggy (my Dexcom reciever) anddddd the panic sets in. Freaking out, I retraced my steps and unpacked/repacked my bag between 3 and 30 times. I was just about to give up when my classmate picked up his phone, let us into his dorm, and found it on the floor of his kitchen.

The lesson I learned? I need another SPIbelt. With Two Pockets. And preferably a clear window for both of them. Which I think is a dream. Or maybe a very expensive CUSTOM hope. One of these days I'll figure out how to walk around without losing/forgetting one of my many diabetic accoutrements somewhere. Til then, I'll keep my fingers crossed and keep patting my pockets