Last week, I had a phone conversation with Dana, the Executive Director of my local JDRF chapter and while on the phone, she invited me to attend the upcoming JDRF research update meeting they were having. Granted, for me to go was a two hour drive. I’m not good at driving distances… let alone in what I consider “big cities”. I made it there… 20 minutes late due to just trying find parking when I thought I was going to be 20 minutes early. Take note: this girl is a pure country girl. I had not planned on all of the extra time just being in a bigger city requires to get 2 miles down the road. But, alas, I made it. And I’m glad I did.
The presenter for the night was Doug Lowenstein, a member of the JDRF International Board of Directors. He was there to give us an update to what the JDRF is doing and how research is progressing toward not only finding a cure and preventing it from even happening, but also making devices and therapies that are less invasive, less complex, and less demanding on us,
“because we know, we know we are going to find find a cure, but know in all honesty has to compell us to tell you that it’s not tomorrow, it’s not probably not in 5 years, it’s probably not in 10 years, so we we’ve got to keep people healthy… we gotta keep people healthy so when that cure comes, they’re not so beaten down by the complications of this disease that they can’t reall enjoy the experience of having that cure.”
Over the course of the presentation, he covered the five areas that JDRF is funding to make things move forward: Artificial Pancreas Systems, Beta Cell Encapsulation, Smart Insulin, Beta Cell Restoration, and Prevention. Right now, I’m only going to touch on the first two because, honestly, even though those two things covered about a third of his speech, they were the most interesting to me.
Doug Lowenstein giving the update about how the JDRF Pipeline works. – Photo by Beth McCrary
He spoke about Artificial Pancreas systems, to which he started the topic by saying, “This stuff isn’t just cool… it’s BETTER than cool“. A man after my own heart, I tell ya. Nothing gets me more excited than to hear about different devices that are being developed that are going to help us to live healthier, fuller. He spoke about the already available Medtronic 530G and the Low Glucose Threshold Suspend feature that it has, but he also mentioned and spoke more about the one that is in the works for the next update for Medtronic – the one with Predictive Alert Low Glucose Suspend, where the pump will respond to, not a threshold, but rather on the predictive alert that the patient is going low. Having already experienced first-hand how the 530G works with Threshold Suspend, saying that I’m intrigued and excited doesn’t begin to tell how I felt when he told about that one. He also touched on the other systems that are being developed by other companies that will handle diabetes in different ways. Ones that are either Treat to Range (where the system will regulate your glucose to stay within a specified range, say 80-180 or 80-160) or Treat to Target (where the system will be a bit more specific in that it will treat to your specific target, say 100 or 120). The goal? To have fully automatic multihormonal systems (since, you know, we don’t only not produce insulin anymore, but we also don’t produce amylin, and we need a bit of help from glucagon sometimes too).
Next, he spoke of Beta Cell Encapsulation. Now, one thing I know is that the DRI has been working on their own version of this biotechnology. But did you know there are also two other companies working on this as well? The company he spoke specificaly about is ViaCyte (click on the word and it will take you to the JDRF’s press release). In his words, it’s ”almost science-fiction”. They take beta cells, put them in a capsule (about the size of a silver dollar, or quarter) – VERY thin, using cell-sourcing technology, place them in there. And we’re talking thousands and thousands of beta cells. The device is a semi-permeable capsule (allowing blood, nutrients, etc, in so that insulin can be produced) – but yet it’s protected from the autoimmune attack. Their first human trial, even though it’s in the very early stages, is expected to be later this year. If this works and succeeds, it will lasts 18-24 months “literally, without thinking of diabetes for 18-24 months.. not once”. Not surprisingly, it’s been tested in mice and has worked successfully for 15 months (which is actually about the entire lifespan of the mouse.. so they haven’t been able to test longer than that). Granted, we all know, mice get the best of everything.. sort of makes me want to be a mouse….but knowing it’s going to human trials has me excited too.
Now, some may think like I did for a long time.. sure.. these things are in the works and they’re getting funding for it, but they’ve funded things before for years and I don’t see where they’re making progress. And I’ve had to eat those words. Little did I know, the JDRF is what has been the key to getting CGMs covered by most insurances.
“The fact that CGMs are covered at all : again, entirely because of JDRF. Because that technology was out there, and insurance companies were not covering it. And so we went out and funded trials, all around the country.. 12 or 14 trial centers. The express and sole purpose was to prove to the health insurance industry that CGMs resulted in better outcomes for people with T1D, ergo, lower cost for insurance companies. That data is the foundation for why insurance companies cover CGMs at all. It’s not where it needs to be… but we’re a lot better off because of that.”
There are many things that the JDRF has it’s hands in all in the name of creating a better life for those with Type 1 Diabetes, and after going to this update, I was able to see and hear the things they are working on trying to get funding for to help us… to help me… to help those who have been diagnosed… and those who WILL be diagnosed. As excited as I am, it’s heartbreaking to still know that we are still even 10, 15, or more years away from technology alone that can help us… so no, a cure more than likely will not be here in 10 years. But to get to where they want to be… where I want to be even in 10 years… even 5, they need the funding. They need us to share our stories with our senators and congressmen so that they will continually sign those letters in favor of renewing the Special Diabetes Program. Last year, 270 members of the House of Representatives and 73 senators signed those letters and the SDP was renewed… but only for one year. That time to renew is fast approaching.
Yes, all of these advancements and treatments that they are working on is way better than cool, but it won’t be cool if the reason we don’t get them is due to the lack of funding. We can do this. Please PLEASE take 5 minutes out of your time to go to the JDRF Action page and sign your own letter to your own congressmen know just how important this is to you.
It’s been two months since I started on the 530G pump and CGM. I have to say, it was something I fully expected to just be able to just jump into and use with no issue at all. Go ahead.. laugh… I understand. While the pump’s operations are relatively the same (as far as bolus, basal, etc), the CGM is actually a very different thing than I remember the CGM being like with the old SofSensors.
Coming from the Dexcom and reading how the literature in the manual for the 530G’s Enlite was supposed to work, I thought it would be a simple transition, but there are some things that still hold true I’ve learned with the Enlite system. You do still need to have a schedule that you can stick to throughout the day to calibrate 4 times. For me, I find the best results come when I calibrate first thing in the morning, about an hour after that (so, when I wake up and then before I drive for work), at lunch, and then supper or bedtime. That, and making sure I don’t see ANY arrows ( I know the book allows for one, but I still don’t calibrate then) when I calibrate have helped tremendously.
One thing that Medtronic won’t… well… can’t (due to FDA) tell you is to explore other site locations. For me, my Dexcom was always a happy camper in my thigh. I never had issue there and it was out of the way. While my thigh would still be a good place for the Enlite, I have a very active (almost) 3 year old (GAH!) that I play with and he will inevitably knock the sensor in a way that would jar it and I would lose that sensor. For me, I’ve learned that my arms are my sweet spot for those. The problem is that it’s not always easy to insert there, and my hubby has to help me with it sometimes. Which, that’s okay because I’m finally getting full use out of the sensor and not having it zonk out after only a few days. For the past week and a half, I’ve had almost spot-on readings. Most of the sensor glucose values on my pump will be within 10mg/dL of my meter. And honestly, the amount even within 2 or 3 mg/dL have been uncanny. I’m hoping the trend continues and it’s not just because I’ve found a “sweet” spot for now.
Another hurdle I had to overcome was the taping issue. I’m allergic to the tape that they send so I had to find an alternative way to tape it. I know how to use Opsite pretty well and I don’t react to it, so I wanted to find a way to make it work. After trying various ways by myself and with the clinical nurse for Medtronic in my area, I think I have a solution… which is honestly nothing more than just buying the smaller 2″ width of Opsite (I had 4″ for my Dexcom sensors.. which was too wide) and cutting a piece the size of the Medtronic overtape, and cutting a hole in it similar to how the MedT overtape looks. By using that the same way you would use the supplied overtape and a thin long strip of the 4″ over the shell to hold it in place (since your arm isn’t flat, you sort of need something to keep the sides from catching on door ways, etc), It’s a pretty good system that has worked so far.
Most of all, I’ve learned to have patience with this system. If you take the time to learn it and don’t rush it, it can be used to your advantage. I’ve also learned that you can’t always follow everything exactly by the book. The instructions are meant to be there for the greater good of all of the customers as most are universal, but some things – like sensor placement and tape options – may have to be individualized…
and that’s okay.
Action Alert: The Special Diabetes Program (SDP), a federal program that is helping to advance type 1 diabetes research, expires this September. Congress is considering legislation RIGHT NOW that could renew the SDP for multiple years! Let your voice be heard! Email your Members of Congress, because if the program is not renewed, JDRF and other private funders will not be able to fill the gap and promising clinical trials will end.
Click the picture above to be taken to the JDRF’s Action page that will allow you to send an email that you can personalize to your Members of Congress (they will automatically send it where it needs to go based on your address information that you put in).
We need them to renew the Special Diabetes Program.
Please, take just 5-10 minutes to fill in the form, write a note, and click send. It’s that easy.
Let’s get the word out that funding for the SDP is VERY important, especially now with so many promising advancements on the horizon.
I’ve sent mine…
Will you please go submit yours?
When I was younger, I can remember having a low blood sugar followed by a high one and having it barely phase me. As long as I got the high back down ( and sometimes not even then ), I could still go out and be me… as if nothing had ever happened. I bounced back from those things like a fully inflated basketball.
Fast forward a few years…..okay.. not just a few… more like, 10-15 years. From my low of 44 between 10pm and midnight to my waking up at 302 this morning, I feel absolutely deflated. I have barely any energy, my eyes even hurt, and staying awake is very hard to do. I don’t remember feeling this level of exhaustion since my son was a newborn. Honestly, I want to go home, put blankets over the windows and curl into my bed and sleep.
What happened? Is it just me getting older? Is it my diabetes getting rougher? (I doubt that…) Granted, yes, I’m savoring the last few months before I enter into a new decade of life, and even received my first “you know it’s all going down hill after this birthday this year…” comment last week. I don’t feel older most of the time. I actually feel okay and as energetic and happy as I did when I was 19 years old and in college. But I’m just not able to rebound from these swings like I used to. I go from feeling 19 to 99. My reboundness has turned into reboundlessness.
I’ve never wanted to use my diabetes as an excuse or anything. I used to think “It’s just diabetes – blood sugar… get it back in line and you’ll be fine… it really can’t affect you that much”.. or “you’ll be okay in a few hours.. suck it up”. I do not take off of work unless it is needed for a doctor’s appointment or if I or my son are sick. Lately, I’ve had to take time for when I have to take tests at school. My work is online, but tests have to be taken at their testing facility, so time has to be missed. I work in a small business, and I feel terrible about missing days that aren’t absolutely necessary to not take. So with all that taken into account, I don’t want to call in simply because I feel like crap due to diabetes. I may not be able to give 100%, but I can work, and maybe take a snooze at lunch. But this morning? I still haven’t gotten my rebound back. I really wish I had called in and just came in an hour late or something. But, then again, my guilt wouldn’t have allowed me to do that.
What are your thoughts? Have you ever called in “sick” because of a wild night of BG’s that completely drained you? Or called in late because you wake up with a BG that makes you feel like ick?
There are times I wonder if I’ve reached my limit as far as how effective I can be as a blogger and advocate. I’m not “well known”, and for those who do know me, there are probably a mixed-bag of feelings towards me. While my heart is in the right place in that I want to do an awesome job at being a wonderful diabetes advocate, I fail at that job miserably most of the time, either due to attitude (which I’m working on) or just not knowing a bigger picture.
I don’t know if many of you know, but I am a social media addict because it’s the only diabetes interaction I get. I don’t have friends that I can meet up with off line at a moments notice. I’m jealous of people who get invited to events year after year after year – not because they’re invited, but because they get to meet up with other diabetics. I don’t live in or near a community that has get-together events other than one annual JDRF walk, and even those do not have many adults with type 1 there .. I see mostly kids.. which is fine, but I also long to see others my age (or round-about my age) too. I can’t afford to go to the wonderful events such as the Friends For Life Conferences or the Diabetes Sisters evens (last year mine was paid for by scholarship money, which I am so grateful for!). Honestly? My life is day-in-and-day-out work, school, family. That’s it. And even that circle is a very small, intimate circle. My diabetic friends are the ones who live in the computer… and a few that live in my phone.
Last night, a friend text me that I had met at Diabetes Sisters last year. She lives 3 hours away, but through our texts, she let me know of meetups that happen, but usually on weeknights. I mentioned that it would be great to do one on a weekend so I wouldn’t be driving the entire day… to which she replied that it could be made to happen. Honestly? I wanted to cry. I mean, really.. I don’t understand what it is about getting together with other people who have busted pancreas’ (pancrei?) too, but it’s just that mutual bond that you are understood. That you don’t have to be ashamed to pull out your meter or pump. That if you go low, you won’t be embarrassed. That you don’t have to explain WHY you’re eating a cupcake.
I dearly miss the feeling that I had during the only two opportunities I’ve had to meet up with other diabetics in the past 5 years. I need to make more in-person personal connections. Getting tunnel vision of only seeing my own life with diabetes probably puts a big damper on how I see things. I want to able to see diabetes through the lives of others to expand that field of view, and expand my ability to be a better advocate, not just for me, but for everyone with diabetes.
The past two days have been a real eye-opener.
I’m upset by what was said, and what has been said, on all sides of the fence (if there could be more than two, that is) of this whole Ms Manners issue. There has been backlash, and back-backlash.
What happened to us? I mean, all of us… myself included.
People used to say, “The DOC made a big impact in my life.” “The DOC ‘gets’ me”. “I feel at home in the DOC.”
As time has gone on, I see more and more people becoming dissatisfied, disapproving, disappointed, hurt, angry, and upset by how someone or a group of people has reacted or how they’ve been treated themselves. More people are voicing themselves in ways that aren’t nice or polite because it’s behind a computer screen. It doesn’t take long to see just how some people feel about how things are either scrolling through Facebook, Twitter, and mostly, through the My Diabetes Secret page.
And I’ll be the first person to admit that I have, at times, been one of those people acting not-so-nice.
And I’ll also tell you that I have also been one who has been talked down, ganged on, and hurt by others in the DOC.
What happened to us?
Have we become so wrapped up in the name of “advocacy” that we hurt those with little to no knowledge of diabetes? Have we become so wrapped up in crusading the cause with determination that we lose sight of what the actual cause is?
It seems there is always a fight going on somewhere… and if it’s been quiet lately, that means there’s inevitably a big one coming soon. That’s what happened yesterday. I’m upset with myself for how I reacted. I was hurt and I reacted through that hurt in an improper manner. I’m upset with how others retaliated towards us who were upset. Just seems there was a lot of retaliation against everyone in one form or another.
And I’m tired of it.
I’m heartbroken that the DOC that I used to call “home” doesn’t seem to be “home” anymore. I can’t change everyone else or their opinions, but I can certainly change mine.
So, with that being said, in the case of the Ms. Manners post, my opinion is that the reader should test where they feel comfortable, not where someone says in correct manners to test. Testing in restrooms is not only unsanitary, but also is not very private at times. The restrooms in airplanes (or at least the one I used) was not at ALL like the ones you see on TV, rather the toilet was absolutely-right-beside the sink/counter top, and I don’t even want to know what may have splashed / spilled / whatever on that counter top where you would be placing your kit, so by all means, if the person next to you is okay with you testing your blood sugar, go for it. The reason I was upset by Ms. Manner’s response was not that she was rude in saying what she did, but that she implied that diabetes care should be hidden. I have been a diabetic for over 25 years now. For 20 of those years, I was embarrassed to be a diabetic, mostly because of things people said such as what she stated in her opinion. Even still today, I still try to hurry through testing so no one will see because, for some reason deep down, it’s something I feel ashamed of… and I shouldn’t. Her response hit on an emotional level that I thought I had buried deep away, but quickly had resurfaced. I responded in a rude post, which I have deleted because, well, it was rude, and did absolutely nothing in the name of advocacy.
What I write won’t please everyone. It won’t be up to some people’s standards or definition of optimal advocacy. But what I do write henceforth, I pledge to write nice, and in the name of honest advocacy. While some views may be negative ones, I will strive to write them with grace and dignity that anyone should.
I know how it is for some of you (including myself). You work day in and day out… and then… all of a sudden… it’s Valentines day. You run into the closest store, grab a card and some candy and write a little note in the card when you drive into the driveway. Or… you swing by the grocery store and buy a bottle of wine and a steak and make it as if you had that planned the whole time and your idea was to finish off the night with a romantic movie of his/her choosing… but we really know it’s all because you forgot that Valentine’s day was coming up and you didn’t plan ahead.
A lot of us last minute’rs struggle to find that one thing that will be just right to show our love for our sweethearts. Sometimes, we only spend about $5 in the just the greeting card alone. Other times, we go all out and spend way more than that if you include the cost of the meal too.. and the flowers… and the candy. What if we just took one of those things out of the equation or made some substitutions to save a child’s life?
That’s right. Just forget getting the candy or get a smaller bouquet of flowers, or get chicken instead of the filet mignon. Or just get a bottle of soda pop and ice cream and make root-beer floats instead of getting that expensive bottle of wine.
How would doing this save a child’s life?
The Spare a Rose campaign has raised above and beyond their goal of $10,000 just in the short time it’s gone live, which is a remarkable thing to say the least considering it only takes $5 to save one child’s life for one month by helping to provide life-saving insulin to them. Honestly, I think the goal is a little low. I want this to meet and surpass even $50,000. The goal is to reach it by Valentine’s day, which is in just 3 1/2 days. Am I being a bit hopeful? Yes. But that would equate 10,000 months of life. Considering how many children are in need of this insulin? That’s not that many months (just over 833 years, or the lifespan of about 12 children). Of course, any amount will do more to help the cause than none at all, so the more we can raise, the more lives we can save.
Help us save lives. Spare a rose… or a steak… this Valentine’s day and help save the life of a child in need.
I’ve been trying to wear the new Enlite sensors from Medtronic for a month now and have only had success with two of them. I’ve also been trying to find out what is going wrong with them when I wear them to throw them off so much. The only thing I can come up with is the same as everyone is telling me (trainers, helpline people, etc) – the head of the sensor is just moving too much or it’s getting jostled.
While I thoroughly tape my sensors down and I don’t see how they could have any room whatsoever to move, I guess there is a remote possibility. But what puzzles me is why they went with the design that they did. If the key to success with the sensors is to not have it move, then why not create a head to the sensor to be more secure by making a more stable plastic base for the head of it and a wider tape area?
This is my thought process: Take for instance the Dexcom sensors. If you’ve ever seen one, they are made in a plastic base that is attached to a larger tape that goes all the way around the sensor. Also, the sensor is inserted at about a 1/3 or 2/3 position of the sensor base (imagine two lines equally spaced on top of the sensor base… it would fall on one of those lines.. like, almost where the G is on the Dexcom transmitter shown in the picture), and so it is surrounded by lots of tape as well as a wide plastic base on top that prevents it from moving or being jostled. That sensor is so protected, it’s hard to say that anything could knock it and cause the filament to break or bend. (Not to mention, it’s inserted at an angle, so you don’t have to worry about pressure directly on it causing the sensor to go deeper and possibly hit muscle or something and bend from that.)
I think Medtronic (FINALLY) has a good *comfortable* sensor, but that it’s design and base design doesn’t help it be the best it could possibly be. There’s not much tape there on the bottom. And considering the transmitter connects on the side of it and not on top, one would think that the head of it would need more security anyway due to the possibility of the transmitter being knocked, causing pressure on the head of the sensor to move. So, maybe if they created a more solid base for the sensor head. If it were sitting on a flat, thin “sheet” of plastic with a bed and possibly a 1/4 – 1/2 inch rim of tape going all the way around it, it would help to anchor it a bit better and keep that fragile sensor from moving.
I don’t think we should have to worry about taping the darn thing so much just to keep the head of it steady. I think the design needs to be centered around the optimum stability of the sensor head.
But what do I know, I’m not a rocket scientist or anything. Just a (successful) Dexcom user for 4 years who is trying to make these Enlite sensors work and not fail.
I’m still planning on making/panting/drawing an actual “thing” for Diabetes Art Day, but I wanted to submit something today since, you know, today is actually Diabetes Art Day. I may go off of this inspiration, but we’ll see.
I wanted to include all diabetics in my choice this year. One thing that is universal to all types is the finger pokes. We all have to poke them with lancets and draw blood to check our glucose levels. It’s a balancing act we all have to do each day and it centers around the blood that flows from our fingers (most of the time), and over time, we get holes in our fingerprints themselves. They are distorted and funny looking where the scars from constant poking are embedded into the grain of our swirls and ridges.
Want to know more about what Diabetes Art Day is and what it’s about? Go here. To see more photos that others have submitted to the galleries, you can click on the links (one for general gallery and one for the children’s gallery) on the right-hand side of the Diabetes Art Day website.
And, as always, thank you so much, Lee Ann, for all of your hard work and dedication into making this initiative such a great success.
Ever had a question you wanted to ask about diabetes? About insulin pumps? About meters? Or even life with diabetes in general?
While I’m not a medical professional and probably will never be one, any advice I ever give on this blog is strictly just my opinion and really shouldn’t be even thought of as advice unless I’m telling you to consult with your doctor.
But, I would like to share bits of knowledge that I do have and if you have any questions for me, I would like to try to answer them from my own patient-based experience. If you want to ask me a question, just click the button over to the right, and fill in the form. If you wouldn’t mind me writing a post about it, please click the box (there will be one on there shortly) that says you give your permission for me to use your question as a topic for a post. Who knows, maybe someone else has the same question, so by you asking, it gets the question out there. I’ll never disclose any names of who asked the question unless you choose to have your initials used, so know that all questions that may be answered as a post will be done so discreetly.
I want to make sure that I’m doing my purpose of this blog by helping others, and I thought it would be a great idea to at least know what your questions are so I know how to form better topics.