The final results: Bionic Pancreas vs. Louise

Last Friday was the official end of the UNC bionic pancreas trial. Just like arm 1, we all collected at the UNC Diabetes center on Friday and got our work ups done on each of us. Around 6pm we turned all our items in, and the Boston team started crunching numbers and making fancy graphs of all the data. They had agreed to meet with each of us for a 15 minute session to go over our control on the bionic pancreas and how it compared to our normal control.

I had a pretty good 11 days of control for my normal care, probably due to all the training for the 10-mile race I ran yesterday. Running definitely does great things for my blood sugars! I wasn’t sure what to expect going into my personal meeting, but one of the trial coordinators hinted to me that they were super excited to meet me because I was an “exceptional” participant. I went into the room (which seemed to just be buzzing with energy – probably due to a large number of very smart doctors and engineers finishing up a very high profile clinical trial!) and we all introduced ourselves. I got to meet Ed Damiano, who developed the bionic pancreas and brought this entire project to fruition for his son who has type 1 diabetes, and Firas El-Khatib, who is another major investigator on this project who handled all the data in an incredibly short amount of time on Friday and made some easy-to-understand graphs to show us how our control compared between the arms.

So, how did my control compare? They first showed me my graphs, and told me that admittedly they thought they were looking at my bionic pancreas results – not my own care! They said my level of personal control was remarkably steady and that my day time and night time averages were wonderful. They actually called me wonder woman! I was very surprised by this – sure, I work VERY hard to keep my blood sugar control as in-range as possible, but no one has ever told me that it is that good. I was surprised they considered me one of “the most unique” participants in this trial of more than 90 people, because even though my HbA1C is in the mid 6% range, many diabetics are able to achieve that so I was confused why they felt I was so special. They said it’s because most diabetics who can get their HbA1C down to that level also experience many more hypoglycemic (low blood sugar) events as a trade off. They said in my 11 days on my own care, I NEVER got below 60 mg/dL at night, and had only a couple day time episodes in that range, which they felt was remarkable for a diabetic who has such a low HbA1C. But, I reminded them that to keep myself from going below 60 at night (or during the day), it takes me setting my CGM alarm to go off when I drop below 80, so I can wake up, test, eat something if I have to, etc. This results in me waking up 2-3 times every single night and constantly paying attention to where I am during the day. This is the type of life I have to live to achieve “wonder woman” status in their books! And, like I’ve said before, I didn’t always have this level of control, and there are certainly diabetics out there who work harder than me and have more out-of-range blood sugars, as well as diabetics who probably put in less effort than me and have better control. It’s a personal decision how much effort I want to put into my own care, but since I choose to put a lot of effort into this aspect of my life, I have to say it was one of the most rewarding things I’ve ever experienced to have this team of researchers basically tell me that I couldn’t be doing a better job on my own!

But, all in all, the bionic pancreas did do just a hair better than my own control – a few mg/dL lower during the day and night averages, which the team was quite proud of!  =) Something else interesting is that on the pancreas I got an average of 31 units of insulin a day. On my own care I take between about 27 and 32 units per day, so they really weren’t too far off, which makes me feel more confident about my own basal rates and carb bolus ratios.

So what’s all the hype about the bionic pancreas, if my own control is “just a hair behind?” Well, for 11 days I didn’t have to wake up in the middle of the night to get a nice “flat line” of blood sugars all night long. I didn’t have to do exact carb counting all day long for every food that I eat. Sure, the bionic pancreas has some functions that need to be tweaked (like for exercise) but that will be improved on future models. It’s just unbelievable that the bionic pancreas can take over something that I probably, on average, put at least 1-2 hours of thought into every single day of my life. That’s over 400 hours of stress and inconvenience a year (10 work weeks of time!) I’d get back for my life. The pancreas would give me back my energy that I lose from almost never having a full night’s sleep. Even if my control is almost as good as the bionic pancreas, the value of that energy and time is immeasurable, and I look forward to the day, which might be only a few years away, that I will have the option to hand my control over to the bionic pancreas and regain those hours of my life.

It sounds like the next round of trials will start towards the end of 2016, and will be 3-12 months in length, and will test a “finalized” version of the pancreas – it’ll all be in a single, dual-chambered pump, the pump will have one tube with two channels in it to deliver the insulin and glucagon, and the glucagon will be a more stable form that will last 2-3 days like insulin. That’s a long trial, so I’m not 100% sure I’d be willing to commit to that but we’ll see where I am when they start recruiting and what’s going on in my life, and maybe I’d consider it. Getting to work with such awesome people on this trial truly was a treat, so that would certainly be incentive to participate again!

The data from this trial will be published towards the end of this year, and at that time I will get my full workup of my personal results which will be exciting (we can’t see it now since it is all unpublished data). It was such a cool experience to participate in this trial – frustrating and a little confusing at times, but overall very exciting and interesting, so I feel so lucky that I got to be a part of it. Thank you to my blog readers for following my experience to the end! As I said in an earlier post, if this work excites and inspires you, you can support it by donating to the Bionic Pancreas team (http://sites.bu.edu/bionicpancreas/donate/), or visiting their website to read more about the project and the next phase of development.

gobionic

Thanks again for all of your support!

– Louise

Trial Arm 2

Today will begin my second 11-day portion of this trial – I’ll carry around the “brick” with me which has the CGM in it to record my blood sugars, but I can’t see the screen. I will not wear the bionic pancreas pumps, but instead I’ll do my normal care and they’ll compare it to my control on the bionic pancreas a few weeks ago. I normally wear an omnipod pump and a CGM, so I’ll get to use my normal devices, with the extra brick devices tracking my results.

This week has gotten much better with the lows that were plaguing me when I first went off the bionic pancreas – the study team thinks it was a combination of all the running I’ve been doing (I have a race coming up!) and the fact that my glycogen stores may have been low in my liver from the combination of exercise and 11 days worth of getting glucagon on the pancreas, which causes my glycogen stores to be released into my body. So I ate a few higher carb meals to replenish my glycogen stores, and adjusted my basal rates a bit to accommodate the extra exercise and things have been much smoother since last Sunday.

In unrelated news, I have a funny coincident to share with you. Only Dexcom CGM users might find this funny…so let me preface this story with that =) As CGM users know, the little grey transmitter that snaps into our CGM sensor and reports our glucose values to the receiver has a 6 month warranty, meaning our insurance will chip in for a new one every 6 months. This still leaves me with a ~$130 bill, so it’s not cheap to get a new one even with insurance coverage. The battery should last between 6-11 months, but that 6 month warranty starts when you order it, so naturally I wanted to use my current one until it ran out of batteries before ordering a new one, to maximize my 6 month warranty on the next one. I am almost at the 12 month mark (April 14th 2014 is when I started using the last one!) and I hadn’t gotten the “low battery” warning, but I figured it had to be coming soon so I finally broke down and ordered a new transmitter last week. It arrived on Friday afternoon, and guess what?? I got the low battery warning Friday night – the same exact day! I must have some good diabetes karma for that to have happened!

So, arm 2 starts today. I’m not looking forward to another 11 days carrying around the brick, the study blood sugar tester, and the study phone, but this is an important part of the trial, to show whether our normal control performs as well as the bionic pancreas. I predict that my control won’t be too far off – I think I do a better job with meals (generally speaking), and the pancreas definitely does a better job overnight (which is about a third of each day, so that can make a huge impact on my overall control!), so we’ll see.

Back to Reality

Last Friday afternoon, I had to give my pancreas back. All the study participants gathered in a conference room at the UNC diabetes center, and we got to chat and hang out while the study coordinators took us one by one to draw some blood and do a brief work up on us. Half of us had been on the bionic pancreas, and the other half had been on normal care. We’ll all return to the study center in a week to flip flop – so my second arm in this trial will be my normal care, but I will still be monitored by the study team so they can compare my control to when I wore the bionic pancreas.

The room was filled with mixed feelings – I think all of us that had worn the pancreas for the last 11 days were both excited and sad to give it back. Of course we all disliked having to carry so much gear around, and having to do the daily infusion set changes. Some people were really happy with the control they achieved on the bionic pancreas, and some of us felt there was room for improvement. Before the trial I was so excited to have something take away the “stress” out of making dosing decisions, but in the end, I found it was stressful to see the bionic pancreas making decisions I felt were not ideal decisions (like dosing huge amounts of insulin for a small breakfast, and then having to give me lots of glucagon to catch up in an hour). I unexpectedly found it was a huge relief to have my control over my diabetes handed back to me. I think the next model of the bionic pancreas will have better options for exercise and more input for telling it about future activities that might impact its dosing decisions. With all the running I do, I think this will be a huge improvement over the current model, at least for me, so I look forward to the next prototype.

I happened to be coasting in the high 200’s all afternoon Friday before going off the pancreas, so it kept dosing me with insulin to try to bring me back down. I started coming down just as we were taking off the system, so the study coordinators warned me that I had a lot of insulin still acting in me. They said that I should be careful going back on my own regimen because my pump wouldn’t be aware of that insulin, so to be cautious when dosing for the next few hours. Well, that was an understatement. Not only was I low through Friday evening, but the past 2 nights I have had debilitating low blood sugars all night long, and often during the day. I was below 50 mg/dL for long periods of time Friday overnight, and during the night I ate 15 glucose tablets!

image2-1

And then Saturday night, I woke up low 3 times. For one of these I had to wake Nik up because I was afraid I might pass out – I had woken up to my CGM alarming and displaying LOW (meaning I was so low it wouldn’t display a number) and my meter confirmed I was only 30 mg/dL. That is one of the lowest lows I’ve ever had and it took a LONG time (and 6+ glucose tablets) to go away. No one likes the feeling of a low blood sugar, and this one was just awful. Nik held my hand through it and kept squeezing it every few minutes, waiting to see if I squeezed back each time to confirm I was still conscious. About 10 minutes later I had come up to 42 mg/dL, and then finally about 20 minutes later I felt alright enough to go back to sleep. Then a couple hours later, I woke up again with my CGM alarming that I was in the 70’s, so it was time for another snack. And then I woke up low this morning too. I don’t know why I’m so sensitive to my normal insulin regimen since being on the bionic pancreas – I even had my basal rates set at -25% of my normal rate all night last night, and those lows still happened which is very unusual for me. I’ll have to check in with the study staff on Monday and see if they have any speculation as to why this is happening an how to adjust to it.

So, to wrap up this post, my trial arm with the bionic pancreas is officially over. At 6:05pm on the 27th we were allowed to disconnect from our bionic pancreas brick and our 2 pumps, and we were instructed to put our old pump back on. By 6:19pm I was back to reality, and heading out the door of the study office.

So, bye for now bionic pancreas, but maybe we’ll meet again! They’re hoping to have the system approved by 2017 – the guy that has made this entire project a reality has a son with type 1 diabetes who will go to college that year, and he wants his son to have the bionic pancreas ready to go to keep him safe away from home. So, maybe I’ll get to hang out with you in another clinical trial in 2016. Maybe you’ll be there in the future to walk down the aisle with me. Maybe you’ll be by my side the moment that I welcome my first baby into the world. I don’t know what the future will bring, but I have a feeling this isn’t goodbye forever!

image1(1)

Sushi Success and My Bionic Belly

Well, its coming down to the last few days of the trial – I have to give my organ back on Friday afternoon! I feel like overall I’m getting ready to give it back – between the daily set changes (sometimes 2 a day) and the ton of stuff I’ve had clipped to my waistband, and the nagging worrying that comes with a small phone taking over the job I’ve taken responsibility of for 13 years, I’m not going to miss it.

I decided that I was going to reward myself for some of the frustrations I’ve had with the bionic pancreas by going out for a splurge meal last night. I had sushi and fried calamari at a restaurant the week before I started on the trial, and that night I was coasting near 300 mg/dL for HOURS afterwards and had a very hard time bringing that blood sugar down with my normal pump. A perfect meal to splurge on! We went out for this exact meal again last night. The proud side of me that wanted to prove that I’m not that bad at managing my blood sugars on my own was deviously thinking “Take that, bionic pancreas! I’m sure I’ll be 300 after this meal just like when I take care of myself!”

IMG_1577

Well, it didn’t happen. Two huge sushi rolls and a plate of fried calamari with a sugary plum sauce later (probably 80+ carbs!), and I think the HIGHEST I got was about 159. Literally – that small peak on the left side of the CGM screen below was my “big peak” after a gluttonous amount of rice. And then I gently came back down to about 110-120 and stayed there for hours. In my moment of doubt, my bionic pancreas did its job perfectly!

IMG_1594

I’m trying to figure out why the bionic pancreas seems to perform best when I eat meals that I consider NOT typical – it seems to do just alright for my “typical size” meals, but it does an excellent job for meals that I called “larger than typical”. I can’t see exactly how much insulin it doses for these larger meals, but it’s probably a pretty hefty dose – in the double digits (10+ units I’m guessing). I think that when I’m on my normal care, when a large meal is presented to me, I’m stingy with my dose. My doses are calculated by how many carbs I’m eating – for example, at dinner I should take 1 unit for every 10 grams of carbs. If I go out for sushi (~75g carbs probably) my insulin pump would suggest a dose of 7.5 units (which is a lot for me!). Then I fall into the trap of thinking to myself “Whoa…that seems like a lot. Let’s just cut that back a few units…I ran a few days ago, maybe I’ll still be sensitive from that exercise…” So I’ll dose maybe 5.5 units, and then I usually end up high. I clearly have a fear of “over dosing,” so I’m always on the cautious side.

For a typical meal, this isn’t too big a deal since I’m not eating that many carbs so if I dose a bit too lightly, the impact isn’t huge. So most days, I don’t notice my stingy-ness with meal time insulin. But for a large meal, being stingy with my insulin can keep me high (and I mean high high – like 300) for hours afterwards. I don’t know why I’m so afraid of over dosing. I am (thankfully) still very sensitive to feeling a low blood sugar, plus I use a CGM regularly so I can see when I’m trending low. I think my fear of overdosing stems back to weight – insulin, in theory, makes you gain weight, and if you give too much insulin and then have to eat even more to treat a low after a meal, that just seems like a double whammy to me. But I also need to realize I hate having high blood sugars after a meal, so I have to get over my fear of large doses of insulin.

When I go in on Friday to return my pancreas, I’m curious if they’ll give me reports of how much insulin it dosed me at each typical or larger than typical meal, and it may help me get over my fear of large doses, because clearly they work well with the bionic pancreas when I have a larger than typical meal! However, it’s also possible the pancreas doesn’t worry as much about overdosing, since it also has glucagon that it  can dose me if I start to go low, and that is a luxury I don’t have on my normal care.

Anyway, I have a few funny pics from last night when I was getting ready for bed (please disregard my PJ’s and bedtime hair). Somehow all my bionic pancreas things have ended up on my stomach in the last day, so here’s a picture of my bionic belly:

IMG_1589 IMG_1584

The 2 pumps and my CGM sensor on one side, the bionic pancreas brick in the pink band, and the two pump infusion sets on the other side with lots of tangled tubing in between! Its amazing it doesn’t bother me to sleep with all this gear on me!

My Pancreas Has a Case of the Mondays

I’m happy to say that my weekend with the bionic pancreas was great! My blood sugar numbers behaved nicely, and despite some of the ups and downs with meals during the week, I did pretty well on Saturday and Sunday. I think this is ironic, because all week long I worked hard to eat very “typical meals” spaced at least 4 hours apart, as recommended by the study team, to really give my bionic pancreas time to learn my body. This weekend my parents were in town, and we ate very a-typically (weird times of day because it was the weekend, as well as some restaurant meals), and my pancreas did better with the a-typical sized meals than it had done with my typical sized meals all week long! Go figure.

I did a 7 mile run early Saturday morning, and woke up around 5:30am to raise my target blood sugar on my bionic pancreas in preparation for the run at 8:30. I tend to be less sensitive to insulin in the morning, and this coupled with the increase in my target value worked out very well for the run. I only ate 2 glucose tablets about halfway through, and I finished feeling great right around 80 mg/dL. Success!

So far, I haven’t had any major system glitches, and I should’ve known this was too good to be true. I had changed my CGM sensor last night on schedule, and everything went pretty smoothly – that was until around 4:30am this morning. I got a phone call from the study staff at that time, and they saw that my CGM wasn’t working properly – instead of just displaying a blood sugar value, it had the dreaded “???” in the upper right hand corner. We did some troubleshooting, and the error symbol wouldn’t go away so I had to wake up Nik and do a whole new sensor insertion. That wasn’t too bad on its own, but CGM sensors take 2 hours to boot up, and in that time, the bionic pancreas has no values to work off of. So I had to manually test my blood sugar (fingersticks) and enter in a value every 15-30 minutes between 5am and 8am. I also happened to be trending low during this whole window of time, so I entered more finger stick values than usual to keep it dosing me with glucagon. Finally 7:45am rolled around, and the boot-up session ended, and I entered my CGM calibration values in, and it just wouldn’t pair with the bionic pancreas for some reason. I had to reboot my pancreas a couple times, and FINALLY around 8:25am it seemed happy.

So, its been a long morning. The new CGM sensor is working all right – the beginning of a new sensor session can be a little erratic as far as reporting blood sugar values go, so this whole morning has been a bunch of “bumpy” trendlines followed by erratic glucagon/insulin dosing by the responding pancreas. I’m keeping my fingers crossed it straightens out this afternoon, since I’m planning to run again in the early evening!

Infusion Sets and Five Day Update

I’m glad to say that things seem to be trending towards much steadier blood sugars, 5 days into this trial. I ran again Thursday night, and that went much better. I still hit blood sugars in the 60’s by the end of 3 miles, but I didn’t feel bad and the glucagon seemed to kick in much faster so I only ate one glucose tablet.

My bionic pancreas is still trying to figure out breakfast – for the past 4 days, I’ve told it I’m eating a “typical” breakfast for me, which is a banana, and it continues to give me a huge dose of insulin, always followed by several large doses of glucagon since I start to drop low. The pancreas should learn that my “typical” breakfast is quite small, so it should learn not to dose as much insulin for it, but maybe it needs a few more days to figure this out. Its keeping my “average” blood sugar around 120, but with peaks up to the 220’s (after meals) and lows in the 60’s. When I control my diabetes on my own, this isn’t too far off from what I’m able to achieve (my averages might be closer to the 130’s, but similar peaks). But of course, controlling it on my own means constant monitoring, use of my own CGM every day, always adjusting, eating for lows, So its pretty impressive the pancreas can do my job as good (if not better) than I can with only 5 days of learning about my body. And I think it will continue to improve over the next 6 days.

There’s lots of people reading my blog (thanks! It feels so great to know people care about this!), including a lot of people who are parents of young kids with type 1, or people who are curious to learn more about type 1 diabetes. One of the most common questions I get from people is “so what actually goes IN your body with an insulin pump?” Also, an annoying comment I often get when I tell someone about diabetes is “Oh my gosh, I COULD NEVER take shots every day!!”  Well, guess what – if your life depended on taking shots every day to stay alive, you’d suck it up and deal with them! And you’d get used to it, as much as a human can get used to poking themselves with needles, and you’d even be thankful for needles because they keep you alive and feeling good!

So, naturally, people are curious about the needle aspect of managing diabetes, and what type of needle an insulin pump infusion set uses, so I’ll write about needles and infusion sets today. As I said, I have to change my glucagon infusion set every 24 hours on the bionic pancreas, and my insulin infusion set every 48 hours, so I’m getting lots of practice with infusion sets =) With my normal care, I use an Omnipod insulin pump, which still uses an infusion set but it is all automatic and contained under the pod, so the pod inserts the needle/cannula automatically and you can’t really see it (one of the good aspects of the Omnipod for me, since I still get squeamish about inserting infusion sets even after so long!). I showed you what infusion sets look like on my skin, and the little blue part can disconnect the tubing while leaving the infusion set in my skin for shower time.

IMG_1558

Changing an infusion set is a million times better when my wonderful boyfriend gets me pretty flowers to keep on my desk where I do my set changes =)

IMG_1560

So, this is a new infusion set inserter package (this version is the “Inset 90, 9mm”). The 90 means it goes in at a 90 degree angle (they have a 30 degree version too), and it comes in 9 or 6 mm lengths, depending on your skin type, how much fat, etc.

IMG_1561

I fill up the reservoir in the pump and then I attach the tubing that is wound inside the package” and the pump has a function to prime (or fill) the tubing so that it has no air in it.

IMG_1562 IMG_1563

Next, I alcohol swab my skin to clean it. These infusion sets can go in any fatty area (they used to say wherever you can pinch an inch!), so I typically wear them on my outer thigh, upper butt, love handle area, stomach, or outer arm. Its important to rotate sites so that scar tissue doesn’t build up. Here’s a picture of the cannula. For insertion, there is a needle inside the plastic cannula to help pierce the skin, and then the needle is removed leaving the plastic cannula behind in the skin:

IMG_1564

That little infusion set pod has a built in plastic launcher spring that cocks back and locks into position:

IMG_1565

And then you place it on your site, and depress the sides of the pod and it deploys into your skin. Then you pull back the pod and the needle part pulls out, and the infusion set is in place (sorry for the awkward angle of these pics…the site is on my stomach!)

IMG_1566 IMG_1567

Then the cannula needs to be primed (filled) as well to displace the air where the needle was.

This is what the infusion set cannula looks like when I pull it out before doing a set change, so that’s what’s actually under my skin for the time I wear that infusion set:

IMG_1568 IMG_1569

So do these hurt? It depends – many times I don’t even feel them go in, and once in a while (like this morning) I have to sit a few minutes waiting for the sharp pain to dissipate. Even if it hurts going in, usually my nerves stop feeling it after a few minutes. Rarely, its uncomfortable enough that I take it out and start over. Also, there’s the possibility that you can hit a capillary and get some visible blood in the top of the infusion set, or you can see some blood when you remove the set, which isn’t ideal. But more often than not, the insertion isn’t that bad, and during my normal care it only happens every 3 -3.5 days so I deal with it.

For shots, which I occasionally use if my pump is acting up and I want a quick dose, the needles I use are 31G 5/16″ needles. That’s SHORT (only about a quarter inch) and that’s THIN – definitely an improvement over the insulin syringes of decades past that had to be boiled and sharpened with sharpening stones! We’ve come a long way, thankfully! Here’s a pic of my syringes, with a bobby pin for reference:

IMG_1570 IMG_1571

I was admittedly terrible with the needles when I was first diagnosed (at that time I used a needle that was about twice as long as the one above, and not as thin since the technology wasn’t as advanced back then and a 1/2″, 29G was as thin as they came). My mom had to do my injections for months (meaning driving to high school if I needed a shot at lunch, following my athletic team bus after school if we had a match at another school to make sure she was there to dose me, always being available to come over if I was at a friend’s house and I needed a dose. Finally I got up the courage to do it myself one night for dinner (it must’ve taken 2 hrs for me to ACTUALLY get the needle in me (which of course wasn’t that bad), with much complaining, and since then I’ve mostly taken care of things myself.

So for those of you who aren’t diabetics that already use this stuff, I hope I was able to demystify diabetes injection/infusion devices, and show you that they’re not as scary as you might have thought! You could even show your favorite person with type 1 diabetes that you’re supportive, and ask if they’ll give you a pretend injection to see what it’s like!

Wearing My External Organ

It’s day 3, and this bionic pancreas is definitely still getting to know my body. I’ve noticed that it learned a little from Monday in that it is giving a bit less insulin, and subsequently a little less glucagon so I haven’t had as many nausea episodes. However, I went for a 3 mile run last night and I think this has thrown it for a loop today. Running usually makes me more sensitive to insulin (aka more low blood sugars) for at least the next 24 hours, so the bionic pancreas had to haphazardly adjust to this overnight last night and during the day today.

I had a pretty strong low during my run, since glucagon takes some time to kick in, and strenuous exercise can make my blood sugar drop faster than the glucagon can act. So I had to eat some glucose tablets (fast acting sugar) to bring my blood sugar back up. I also had a low this morning after breakfast that I had to eat some sugar for since the glucagon didn’t kick in fast enough. So, my bionic pancreas has some learning to do, but its only day 3 so I’m keeping the faith! It will learn over time that I still need less insulin than what it is giving, which will keep me from going low so often and needing a glucagon dose or a sugary snack. And also, I think the next prototype they’re working on will have a function to help prevent lows during or after exercise more effectively. This model doesn’t really have a function for that built in, so the study staff warned me to be careful about exercising and bring sugar with me, so I was more than prepared for that low.

I showed you the many things I need to carry on my person for the bionic pancreas, so I thought I’d put a few funny pictures in today to show you how I’ve integrated it (or attempted to, anyways!) into my outfits. I’m in job search mode right now since I’ll be graduating in several months, and of course I have a ton of networking events to go to in the next week that I need to look “professional” for. I went to a networking thing Monday night, and here was my get up for that:

IMG_1544 IMG_1546

Not too bad, I’d say. That pink running belt has been a lifesaver for carrying everything, so I’m glad I have that!

At that networking event, I was helping with the registration table. I was taking advantage of my time near an outlet to charge my pancreas (this thing drains batteries like crazy!) and I noticed a lady walk in with an insulin pump.  I’ll often say to Nik, “That person we just passed – DID YOU SEE THEIR PUMP?? THEY HAVE DIABETES LIKE ME!” But he will totally not have noticed anything unusual about the person. Clearly I’m just too observant of other people’s waistbands! That being said, I don’t think I’m alone here – any diabetics reading this, don’t you agree that we have the uncanny ability to spot a diabetic from a million miles away if they’re wearing an insulin pump, or are carrying a tester case? And I definitely perk up if I ever pass a lone test strip on the ground that isn’t mine – I know there’s another diabetic about! We know there’s many other diabetics out there…and when have a diabetes encounter “in the wild,” its just exciting to feel that instant camaraderie, and instant respect for a total stranger that knows more about a particular aspect of my life than my own parents and friends and boyfriend can ever understand.

Anyway, I digress. So this very nice lady with the insulin pump walks up, and she instantly recognizes my bionic pancreas brick plopped on the table charging. She had seen pictures of it from previous trials, and it is pretty distinctive looking (since it is WAY bigger/thicker than any 2015 cell phone, and has “Boston University” written on it.) She was so excited about it, and we agreed to meet up after the event so I can show her all the parts, and tell her how it’s working. She was incredibly supportive, and really curious to know how it was working, and I have to say it is just so cool that the diabetes community is like that. So many type 1 diabetics are eager to participate in or contribute towards research, and we all want to know how current research is going. The discoveries being worked on in the diabetes research world are things we’ve been told about since we were diagnosed. When I was diagnosed, doctors said there would be a cure in 5 years. Five years later they said the same thing. Ten years later they said the same thing. A cure always seems to be 5 years away – and I think diabetics just get excited to see actual clinical trials going on for things like the bionic pancreas that are truly less than 5 years away, and that will make our lives easier. So meeting this kind lady “in the wild” was a fun and encouraging “diabetes encounter” for me!

So back to outfits! For my run yesterday, I spent quite a while figuring out how I’d carry everything with me in a comfortable manner. Here’s what I ended up with – I’m standing in my lab, getting ready to head out for my run:

IMG_1559e

My friend carried the blood sugar tester bag for me, but I managed to keep everything else on me, with no major issues. And I didn’t get too many glaring stares from passer bys about my pointy-looking abdominal area. Success!

I’m still hoping the pancreas keeps learning more about my body in the next few days because I’m still having lots of ups and downs. It is pretty cool not having to worry about calculating doses or (for the most part) dealing with lows, so I’m still enjoying the trial.

Louise