I feel like it hurts all over. It shouldn’t, but it does, and sometimes it makes me really want to just stop with all the pricks.
The past several weeks, I’ve started really feeling like a pin cushion. After 34 years with diabetes, you’d think I’d be used to the pricks, pokes, and prodding. But I’m still not used to it.
This week, every time I prick my finger, it hurts. When I put in my infusion set, which I pretty much religiously use my stomach for and rotate sites, it feels like I am pressurized. Pretty sure one of these days I’m going to poke myself with that long ass needle and I’m going to explode like the Kool-Aid man running full speed into a wall. I’m apologizing in advance for the mess that someone is going to inevitably have to clean up. (Sorry about that.)
(I found this image on a blog documenting a project doing powder explosions. It’s amazing, and perfect, and I’m jealous that I didn’t get an invite to do powder explosions with them. So if you guys are reading this…can I play next time? Please? Because, so awesome.)
I hate every single time that I have to change my infusion set, and stab that wicked long needle into my skin, knowing good and well it’s going to hurt. I do it, because I love being on my insulin pump, and getting to say that I’m bionic. I feel like I have more control of my diabetes because of my insulin pump and continuous glucose monitor. But the infusion sets and the sensors, it hurts. Every. Single. Time.
We people with diabetes talk all the time about how difficult it is to keep our blood sugar in range, and get frustrated because we’re running too low or too high. But I feel like we often gloss over some of the details that really, quite frankly, and literally, are painful.
This isn’t a blog post full of solutions, and advice, and magical words that can be said to make this junk less “ouch.” It’s just to acknowledge that it freaking hurts sometimes, and if it hurts for you too, you’re not alone.
Day 2 of Dblog Week 2015 is about those things that we keep to ourselves, and don’t necessarily like to talk about out in the open. Many of us share lots of aspects of our diabetes lives online for the world to see. Today we get to discuss some of the aspects of diabetes that we choose to keep private from the internet, family, and even friends. Why is it important to keep things to ourselves?
Recently I was asked to complete a survey on employee demographics. You know, the basic questions that it doesn’t take anything more than looking in a mirror to answer. Male, caucasian, brown hair, eyes that change color, glasses when I remember where I put them, no piercings (just holes where they used to be), tattooed, sneakers > dress shoes, untucked > tucked, tie over top button, and plaid if there is ever a choice.
Okay, so maybe they didn’t ask all of the questions that would lead to those answers, but for an employee demographic survey, it didn’t take long to get real personal. One of the sections asked me to voluntarily self-identify any disabilities that I have. I’m thinking, “Okay, so they want to know if I’m physically disabled, if I need accommodations to get to and fro, or something like that.” As I read through the list, I began to feel like it was less and less voluntary, and more and more accusatory.
I will be the first to say that I’m biased when it comes to surveys like this. Whether they are at work, at the doctor’s office, or as part of a contest to win a lifetime supply of alcohol swabs and cotton balls, these questions feel loaded, and require a person to think about themselves in a very particular way in order to answer them effectively. And for the life of me, I have a really hard time thinking of myself as “disabled” because of my diabetes.
I imagine many people with diabetes and other conditions on this list feel the same way. It is extremely difficult to think of ourselves as disabled, or that we might need special accommodations because we have to live with something outside of our control. The fact is, even without any of these things, any one of us could need special accommodations at any given point in time. But does that make us “disabled” because we are strong enough to admit that we might sometimes need help?
Diabetes as a disability is not something I like to think about. I don’t want to talk about it. I don’t even want to imagine it. Even if, in reality, diabetes or complications thereof may become a disability for me, it is not something that I am willing to give more than just a brief moment of panicked thought about.
Diabetes is challenging, but so is PTSD, depression, MS, epilepsy, cancer, and every other alleged disability on this survey. Yet, having any of these conditions does not make us disabled. As much as a disability is a physical challenge, it is also an allowance that a chronic condition is strong enough to limit us from doing the things that we accept that we are capable of doing.
For now, for this survey, I don’t wish to answer. None of the items on this survey, regardless of how many I may have personally, are anything that I am willing to accept as a disability. That does not mean that I may not need special accommodations from time to time, but that simply means that I’m human, not that I’m disabled. We all need help and special accommodations sometimes, and we shouldn’t be labeled negatively because of those needs.
Even for a lifetime supply of alcohol swabs and cotton balls.
I love Dblog Week. This annual event when we hear from the diabetes online community (DOC) about shared themes and ideas is always fascinating. I especially love that Dblog Week is accessible to everyone, and embraced by those who are a part of the DOC and those that quietly just need to know that there are dozens of other people living with diabetes…and doin’ it and doin’ it and doin’ it well.
Today, the blog theme of “I can…” is meant to showcase the positive side of our lives with diabetes. What have you accomplished, despite having diabetes, that you weren’t sure you could? What have you done that you’ve been particularly proud of? What good thing has diabetes brought into your life?
Conveniently enough, today is the day that my team in the medical library and I published the very first issue of The PLAID Journal, an open access, peer-reviewed journal for and by “People Living with And Inspired by Diabetes.” PLAID is one of my dreams come true, and I am so proud of what we have created, and thankful for the almost year and a half of hard work that has gone into making it something both accessible and legit.
People with diabetes is everyone. The PLAID Journal is meant for everyone. Each of us is touched by diabetes, whether we have it ourselves, or whether we know someone who does.
When my team and I set out to create a new journal, I really wanted to see the things that we blog about and share online reach the academic literature, and become part of what we research, study, and use to progress living well with diabetes. I want our voices of needing better technology, more comprehensive health insurance coverage, and greater access to mental and physical health professionals to be heard, and supported through scientific and social research.
With The PLAID Journal, I want to take the personal things that we share with the world every single day and give them a vehicle to travel beyond just the diabetes online community. I want our passions to reach the people that can provide us with the evidence to create the change that we so desperately need in our diabetes world.
To make PLAID successful, I need your help. I want you to read, share, and contribute to The PLAID Journal. I want you to encourage researchers to publish in The PLAID Journal. Over time, PLAID will only grow stronger because it is built on our voices, our needs, and our experiences. When you read The PLAID Journal, I want you to imagine all of the things you CAN do, even with diabetes. I want you to dream. I want you to be successful.
I’ve been running high lately, and I don’t know why.
That’s a lie. I know why. I eat too much, too often, and too late. Or I don’t eat, and then I go low or get super hungry, and then I eat all the things. Dang those holiday treats!
I haven’t been working out, exercising, or bringing sexy back. I have a gym membership, so accessibility to a place to exercise certainly isn’t the problem. I always find some seemingly good excuse for not getting there. First I was busy trying to find a new place to live. Then I was busy moving. Then I hurt both hands during the move.
Then I got even busier than usual at work creating something that I am extremely excited about. We are starting a new diabetes journal, available to all, and we’re now accepting research and volunteers to be peer reviewers. Check out The PLAID Journal. You can see a couple of videos and news articles about the The PLAID Journal on the Announcements page. Also, the Facebook page for PLAID. (Lots more to come on PLAID, so stay tuned.)
Then the knee that I hurt while cycling several years ago flared up again. Add to all of that an ever-growing to-do list, and there is always something that keeps me focused on something other than me.
I hate it. I hate the feeling of my blood sugar being high. I hate that I can’t get my BG to stay where I want it. I hate when I prick my finger and see a number that is dramatically higher than I feel because my body is getting used to it. I hate being thirsty. I hate waking up in the middle of the night to go pee. I hate thinking about it. All. The. Time.
I also hate being overweight. I hate feeling like I am the overweight that I am. I know that we’re in an age where we are supposed to accept our bodies and all that jazz, but this is not normal. I can’t just accept this. I don’t feel like me at this size. I feel like I’m stuck in a heavy fat suit, and everything I do is just that much harder because of it.
But for whatever reasons, I can’t seem to change it.
Before April of this year, I was on Weight Watchers, and I was doing pretty well with it. I had lost over 10 pounds in three or four months, and was feeling pretty good. I was on track to get back to a weight and size that I wanted to be. And stronger. And back to a more human shaped geometry, instead of just round.
Today, I’m the heaviest that I’ve every been. Almost 207 whopping pounds. I put that out there for no other real purpose than to make it real. I should be about 170, in an ideal world. And I’ve seen a human skeleton. Short of an anatomical anomaly, there is no such thing as “big boned.” I’m just plain old overweight right now.
As joyous as April started out with Amanda and I tying the knot in beautiful Key West, it ended in tragedy with the loss of our precious little cat Squirt, and I know that losing her has played a role in where I am now. To some it may sound silly (she was so much more than “just a cat”), but she was a part of my life every single day for nearly 14 years. It feels like the loss of an immediate family member, because that is exactly what it is. I think dealing with that loss, on top of everything else already mentioned, has made me do things like eat my emotions and talk myself out of doing fun active things.
Working out and exercising has always been like therapy to me. Be it gym, walking, running, or cycling, it’s a safe place for me to get out all of my stress, frustration, anger, aggression, sadness, and any other negative emotions that I’m dealing with. Some days I only need 30 minutes or so. Other days I might need a couple of hours. It also makes sure that I have a few minutes during normal human hours of the day that are just for me, Martin Wood, where I’m not making sure that the needs of everyone else are being met.
It’s my career choice to help people, and it is a major part of who I am, and I love it, but sometimes in order to help people we have to make the time to help ourselves. I haven’t been doing enough of that. Now that we are in a neighborhood where there is less chance of going for a walk or run and interrupting a drug deal, I finally feel that spark of motivation to get out of the house and move around.
I also enjoy doing other things, like reading, video games, movies, and basically anything that doesn’t involve repairing yet another kitchen appliance in my house. Sometimes it’s hard to make room for those things, but we have to. Down time is as necessary to life as to-do lists and full calendars. A friend said recently that “cancelling a holiday commitment is like heroin.” Try it. Substitute an evening on the couch with the dog and the first half of this season of The Walking Dead. (Beth…noooooo!!!)
Life with diabetes is freaking hard, man. Life with diabetes is about so much more than just diabetes. Life with diabetes is a complicated balance of biometrics, medical therapies, activities, unexpected events, important considerations, random emotions, bright sides, dark places, and things left unsaid that have to be factored into an inarticulate equation that hopefully results in a personal definition of success.
All of this is what it takes to get my A1C where I want it, to get my BG’s on a more level plain instead of high or bouncing all over the place, to get back to Weight Watchers and better control of all of the delicious things that I’ve been cramming into my face hole, to develop the strength and stamina to avoid future injuries, and to drop some pounds and be able to haul ass without it taking two trips. That is what it takes to focus more on the things that I do have in my world that bring joy, for me, Martin Wood. Like these two…
That is what it takes to start to feel better. To feel happy. To feel able. To feel normal. And if I can’t do it on my own, then I’ll have to figure out who the right people are and get them on my bus to help me get further along down that road. For now, it’s one mile at a time.
In August, diabetes educators from all over the nation traveled to Orlando, Florida to attend the American Association of Diabetes Educators Annual Meeting 2014. I did too. These are my stories.
*ching, ching* (Law and Order style)
A fellow medical librarian and I arrived at AADE on Wednesday afternoon and went directly toward the Exhibit Hall and registration desk. We were sort of attending last minute, so we knew we would just have to feel out the schedule and learn as much as we could with the short time that we had at AADE. Our goal was to talk to as many folks as possible in an effort to learn what we need to continue work on a diabetes project that we are working on. (More to come on that…say, around November 14th or so. Seems like as good of a date as any. *wink, wink*)
First and foremost, the Exhibit Hall at AADE is enormous compared to the medical librarian conferences that we are accustomed to. Even though some have reported about how AADE is shrinking, it still feels like a big deal to me every time that I go. All two times that I’ve gone. Whatever, it still feels big, and important, and like people making a difference is happening or on the cusp of happening all around me while I’m there.
I had seen it last year at the Philadelphia AADE, but this was my colleague’s first time, and it was quite a shock to her. We started where everybody starts their first trek through the Exhibit Hall…on the side that doesn’t have salespeople staring at us and licking their chops like hungry wolves.
Some folks walk into something like AADE and own the joint. They know exactly what sessions they are going to, what they want to get out of it, who they want to talk to, and are prepared for all of the free stuff that they can carry back home to their practice and patients. If a burro is used, so be it. You get no judgement from me. For this AADE visit, I just wanted to talk to as many people as possible, and learn as much as I could. And I did, often in unexpected ways.
I learned a lot about how Certified Diabetes Educators (CDEs) think about people with diabetes, and that isn’t a bad thing. I learned that a lot of them even have diabetes themselves (both Type 1 and Type 2), which is encouraging. I think it is so important for our healthcare team to understand us, what we need, and what we don’t need as people with diabetes. I wish some folks outside of our healthcare team were more interested in understanding us the way that so many of the CDEs that I met yearn to.
I learned that some CDEs think that us diabetes advocates and diabetes bloggers should be regulated, have an advisory board, and be held to medical standards. There is an assumption, and heck, maybe it’s even true sometimes, that we all give medical advice on our blogs. Fortunately, I know that isn’t true of all of us who share our lives and stories with diabetes online. I stand alongside so many in the Diabetes Online Community (DOC) who do not give medical advice, but can still be a valuable asset to living with diabetes. We understand the burden, and can help you carry it when you feel like the weight is just too much. Sometimes it is enough just to know that someone else “gets it,” and that is where the DOC (in my opinion) is the strongest.
I can’t tell you how many units of insulin you should dose for that hamburger for your diabetes. That is between you and your healthcare team. I can tell you this though: If you don’t have a CDE who you can call at any time, day or night, to ask questions about your diabetes, you should find one or find a new one. The CDEs and other health professionals that I talked to at AADE want you to call them. They want to help with your diabetes. They do not want to have to visit you in the hospital when all it would have taken was a five minute phone call at eleven o’clock at night to get their expertise. And if you do have to go to the hospital, they want to be there for you and help you through. I was touched by how caring the CDEs that I met at AADE were, and to be honest, they far exceeded my assumptions and expectations.
On the second day, as we were wandering around the Exhibit Hall, I found that I couldn’t make a decision. About anything. We were trying to figure out what to have for lunch in the cafeteria section at the back of the hall, and I kept getting in line and getting out of line, not able to figure out what to do once I got to the register to order. I was getting so angry and frustrated, but the only real sign my colleague could decipher was that I was ticked off about something. And I was. I was extremely ticked that I was low, and I had to take time out for diabetes in the middle of a diabetes conference (of all places), and that it was ruining my time there to learn and network.
I finally just sat down in the middle of the Exhibit Hall (like you do when you’re low) and started sucking down Level gels like it was my job. Standing and walking and wandering was just too much work for my low-brainy self. I am so thankful for those gels, as well as the CDE who was sitting across from my quietly noticing my lowness and keeping her eye on things. It’s moments like this one at AADE when my hands aren’t cooperating, I can’t think, and I’m on the verge of whether I can chew and focus enough to swallow that the gels save me. I also appreciate my colleague sticking with me, figuring out what was going on after I was having trouble talking and was breaking out the Level gels, and not rushing me or making me feel like I was taking away from her AADE experience while having to deal with my low blood sugar nonsense.
I guess if you’re going to go low, there aren’t many better places than in the middle of over 2,000 diabetes educators.
I’m disappointed in us. We, people with diabetes, active and vocal members of the diabetes online community (DOC), who are supposed to be there for each other, support each other, lending an ear to listen, a shoulder to cry on, an “I’m high” joke, and the occasional insulin pump reservoir or extra CGM sensor, are demonstrating clear and present signs of being a bunch of jerks.
Over the weekend news broke about Jeffrey Brewer leaving JDRF. He posted on his Facebook page…
Jeffrey, in his tenure as the top dog over at JDRF, seemed to give those of us who are adults with Type 1 diabetes (T1D) something we could get behind and support. We felt listened to, for a change. The re-branding of JDRF under his helm, and the focus on those things that make living with diabetes better, and still the same focus for the as yet unattainable holy grail cure for diabetes, inspired us. As adults with diabetes, we felt like we could really support the efforts of JDRF, some of us for the first time, and some of us again after years of feeling left outside of the scope of what JDRF does. We could imagine living better with Type 1 diabetes, something that the world often does a better job of telling us we can’t do.
I don’t pretend to know all the ins and outs of what is going on behind closed doors at JDRF. I am a new member of the JDRF Type 1 Diabetes Voices Council, and I found out the news at the same time as the rest of the world (or at least the Facebook world). I’d be upset about that, but honestly, I get most of my news from Facebook and Twitter anyway. If it is important, someone will share it. And share it they did.
People from all over the internet expressed concerns about what would be next for JDRF. Overwhelmingly, nobody liked the idea that Jeffrey Brewer was leaving and moving on to whatever happens after you are a CEO of an international diabetes research foundation. I like to imagine that there is probably a lot of secret bases in volcanoes, flying Big Boys, sharks with laser beams, and fembots. I’ll report back when I get to that spot in my career. In the meantime, I wish Jeffrey Brewer nothing but the best as he moves forward.
On Monday, news hit the wire that Derek Rapp would be the new interim CEO of JDRF. My friend Amy, who is interning with JDRF this summer, wrote a great post detailing what was happening in JDRF HQ with all of this news.
Not surprisingly, change was met with extreme belligerency by some, a few folks who even went as far as creating a Change.org petition to have Derek Rapp denounced as the next CEO of JDRF. Some folks aren’t comfortable with Derek’s background with Monsanto, and want to blame Monsanto for causing increasing numbers of diabetes diagnoses, citing conflicts of interest and all kinds of claims. I won’t disagree that Monsanto is a questionable organization in many ways, but no successful company can be all bad and still be successful in business. That said, if you have the academic and scientific research that proves Monsanto is the cause of Type 1 diabetes, by all means stop reading this blog and go write that $h!t down right now, get it peer reviewed, get it published, and go collect your Nobel Prize. I’ll be the first person to congratulate you. Until then, all we’re doing by blaming and name calling is demonstrating that kids with diabetes grow up to be a-holes with diabetes.
Dayle summed up the organizational changes of JDRF (and ADA) quite well in her post yesterday…
With some people sharing excitement about the changes and some spewing venom, I imagined what it is like to be Derek’s son, who is a young adult with T1D. His son is also my friend through being a part of Students With Diabetes together. After thinking really hard about it, I want Turner to know that if he is sick of diabetes and is feeling overwhelmed and needs a friend, or if he rocks a no-hitter on his CGM and wants someone to share that with and celebrate, that I am here for him, always. I want him, and so many other people with diabetes just like him, to know that there is a community of compassionate people just a tweet, a Facebook status, a blog post, or a phone call away anytime that they are needed. I don’t want our diabetes community that I love and cherish to be spoiled by the rotten comments or actions of a few. The absolute last thing that I want is a person with diabetes to feel like they are alone and don’t have someone that they can share this stupid disease with. When we go off on a bashing spree about how evil someone is for taking the lead of a foundation that is focused on making our lives better, we are not being advocates for people with diabetes…we are being hypocrites.
My friend Tye Manor speaks to people about how he always tries to assume positive intent. In this JDRF leadership shift situation, I don’t know all of the background story, but I can make the choice to assume that the reasons for the changes are positive. I am going to assume that the changes are to make the lives of people with diabetes better, to make progress toward a cure, to hear our voices as people with diabetes, and to keep changing so that goals can be met and achievements can be realized. Until there is type none.
I choose to assume positive intent. I’m going to ask the question, “How can I help?” I’m going to be there on the front lines as we are making progress. I’m going to be the diabetes advocate and member of the diabetes online community that I want to see in others. I’m going to be that friend with diabetes that I didn’t have for the first 28 years of my life with diabetes. Because I’m selfish. I want better technologies, better therapies, and better ways to live with my diabetes. I want the bionic pancreas, real bad. I want an encapsulation device that allows me to not have to think about this diabetes nonsense anymore. And I want you to have all of these things too (except maybe diabetes). Because I love you, and I love that I am not alone, and I’m glad that you are a part of my world with diabetes.
And I have zero interest in either of us being alone with diabetes ever again. Pretty much whether you like it or not.
It can be extremely difficult to get an insurance company to cover the costs of continuous glucose monitoring (CGM) systems. The excuses that these holdout insurance companies provide as to why they don’t want to cover CGM are becoming less justifiable thanks to research and advancements in the way we think about the needs of people living with diabetes. This is why I am a Diabetes Advocate.
So far in 2014, I have only been able to get four Dexcom continuous glucose monitor sensors out of my health insurance company. Four sensors is a one month supply. It is now July. That means for five months out of this year (so far) I have not been able to wear my CGM or benefit from the data that it gives me and the alarms that it uses to tell me when my blood sugar is dropping too low or rising too high. Each time I try to get more CGM sensors, I have to restart the approval process with my insurance company, spend weeks going back and forth between Dexcom, my endo, and insurance trying to get all of the documentation together to submit for approval, just to be denied because either Dexcom isn’t a preferred provider, or because the insurance company has decided that there isn’t enough evidence to support that CGM is a benefit and results in better control of diabetes. So then I appeal. And I know there are many, many other people struggling with getting CGM coverage by their health insurance just like I am.
This is also why I am a medical librarian. Challenge accepted, health insurance industry. Bring it on.
The most dangerous side effect of insulin is hypoglycemia, or risk of dangerous low blood sugars. The ability of CGM systems to alarm and notify a person with diabetes is one of the most valuable and beneficial advances in diabetes technology ever. EVER. The fact that there are small devices now that can warn us, as if to say, “Hey dude, your blood sugar is dropping. It might be a good idea to get a snack or something,” is incredible. This is an incredible benefit to people with diabetes so that they don’t get in a dangerous situation with a low blood sugar that can leave them incapacitated, unconscious, or possibly even dead if it happens in the middle of the night while they are asleep. Do you know how health insurance companies make money off of a dead person with diabetes? They don’t.
CGM technology benefits insurance companies too. It is incredibly cheaper to provide the technology that will alarm and cue someone to get a sandwich, a juice box, or a Level gel to get their blood sugar up on an ongoing basis than it is to pay for home or work visits by paramedics, rides in the back of an ambulance, hours in an emergency room, and likely overnight stays in the hospital depending on the severity of the lows. A low blood sugar can happen at any time, and is usually unpredictable based on varying amounts of food, activity, stress, varying absorption rates of body tissue from one spot to the next, and any other factor in life that can cause any amount of change. Sometimes they happen for seemingly no reason at all, and therein lies the danger.
…a systematic review from 2012 that concludes, “There are indications that higher compliance of wearing the CGM device improves glycosylated haemoglobin A1c level (HbA1c) to a larger extent.”
…the research that concludes, “CGM with intensive insulin therapy appears to be cost-effective relative to SMBG [self-monitoring of blood glucose] and other societal health interventions.”
…the research that finds that regardless of prescription approach, “…patient-led and physician-driven prescription. Both modes of using CGM provide similar long-term metabolic improvement.”
…the one with early analysis of cost-effectiveness of CGM that says…well, I’ll just let is speak for itself. “…the overall quality-of-life effect of CGM arises from its ability to both improve the immediate quality of life of diabetic patients as well as reduce future complications through enhanced glycemic management.” But wait, there’s more! “The provision of greater glucose control data may have improved the quality of life of patients by facilitating decisions related to food intake and insulin regimens as well as by reducing the risks and fears of hypoglycemia.”
…real-world benefits of CGM. “Personal CGM, in a real-world setting, improves glucose control and reduces the rate of severe hypoglycemic episodes.”
This is only a start. There is more research out there, and more research on the way that shows the benefits of CGM on the lives of people who use insulin to manage their diabetes. It is time for health insurance companies to get with the program, and it is time for us to speak up and shout from the rooftops what we need, and make it happen. Some health insurance companies are better than others (PPOs tend to be more willing to cover CGM than HMOs, for example). Until coverage of CGM is non-negotiable, our work as advocates for our own health and well-being is not done. We should not have to beg and plead to get this widely accepted diabetes technology that has already been and continues to be proven to improve and save lives. Coverage of CGM should be non-negotiable, expected, and mandatory.
Now that we are staring down the barrel of the potential for the bionic pancreas in a few more years, the need for CGM acceptance by insurance companies is only going to grow. Without insurance companies accepting that CGM is indeed a good idea for people with diabetes, and without insurance companies making CGM technology accessible without the barriers and complicated processes of getting approval, and without more research documenting the cost benefits and effectiveness of CGM versus emergency responses to hypoglycemic episodes (low BGs), the bionic pancreas will never make it past the prototype phase. And we need this forthcoming technology that the bionic pancreas, and the research behind it, provides.
I’m tired. I’m so very tired. I’m tired of living every single day and running every decision that I make through a diabetes filter. I’m tired of having to prick my finger before I leave for work in the morning to make sure that my blood sugar level is okay for me to be able to drive. I’m tired of checking before meetings to make sure that my blood sugar isn’t dropping, for no other reason than so that I don’t get caught in the middle of a meeting not making sense because my blood sugar dropped too low. I’m tired of having to check before I put any bite of food in my mouth, and then having to check an hour or two after to see if that food and the insulin that I took to cover it worked the way that I thought it would. Sometimes it does, and sometimes it doesn’t. Most of the time it defies explanation. I’m tired of having to decide if I get to go to the gym and workout today based on what my blood sugar is right before I go. I’m tired of having to check so that I can drive home. I’m tired of having to check before I can go to bed. I’m tired of not being able to go to bed because I did check, and having to wait for my blood sugar to go up or come down.
I’m tired. I’m tired of the hassle. I’m tired of the bullshit. I use that word because that is just how tired of it I am. I don’t have pipedreams of a cure for diabetes. I’ve had diabetes for 33 years. It’s all I know, and all I have ever had to deal with, and I don’t walk around with imaginary hope that a cure is coming in five years, ten years, or even necessarily in my lifetime. I hope it does. Maybe it will, but short of a scientific breakthrough, I don’t feel like that is the best place for me to invest my energy. In this age of technological advancements, this age full of the smartest people that have ever lived on this planet, and this age where people are open to change and progress and opportunity, I want to be able to rest my mind when it comes to diabetes. Let’s work together to support things like the bionic pancreas, CGM coverage by insurance companies, and these things that simply make life with diabetes easier and better.
I don’t feel like making life easier with diabetes is really asking too much. If you think it is, then you try it. See if you can make it 33 years counting fingerpricks, carbohydrates, activity levels, insulin doses, times you’ve found yourself in a room waking up and not knowing where you are because of a severe low blood sugar, a tongue chewed up from a low blood sugar seizure, bruises that you don’t know how you got, and cracked ribs from the physical exertion of just trying to survive that low. Survive that, and then I dare you to tell me how CGM isn’t effective and isn’t necessary.
I double arrows down dare you.
I am so fortunate to have received a few sensors from other PWD who had the extras to spare. Thank you! You know who you are, and you have been a big help (he types, as he is recovering from a BG of 39 and still a little shaky). I received a call from Dexcom this afternoon, confirming that they finally got all of the pieces that they needed with insurance approval and documentation from my endo, and they are overnighting me new sensors. Yay! It took 7 months, which is ridiculous, but people with diabetes are experts at being stubborn and steadfast until we get what we need (*cough* bionic pancreas *cough* encapsulation *cough* smart insulin). So thankful that it appears to have finally been worked out. Ciao for now! (Did I really just type “Ciao for now!”? I must still be low…)
Order got delayed, again, before it could be shipped to me. Today I finally received a 90-day supply of Dexcom sensors, allegedly with auto-renew when I need more. Still not clear on what took so long, aside from the explanation from my Dexcom rep that it was dramatically delayed by all of the authorizations required in order for insurance to approve. I’d demand more of an explanation, but it’s been a long battle, and I’m tired. Glad to finally have CGM data again, even if it did take 8 months longer than it should have.
This weekend I am live blogging from the Students With Diabetes Leadership Conference 2014. Keep checking back here for updates all weekend, and follow along on Twitter at #SWD2014 as the weekend picks up steam.
The Leadership Conference is a preliminary session of the Students With Diabetes 2014 National Conference for students WITH diabetes who have earned and have been awarded a summer internship with diabetes companies, like Novo Nordisk and Tandem.
Friday, June 6, 2014 – SWD2014 Leadership Confernce
8:15am – About eight students with diabetes are awake and downstairs early for breakfast this morning. More trickling in from upstairs. The Heat lost 110-95 last night, so some of us are more excited about having stayed up so late watching the game than others. Like Reagan from Texas. He is a happy San Antonio Spurs fan this morning. Still…go Heat! Where’s my coffee?
9:00am – Nicole Johnson welcomes the student leaders to the SWD2014 Leadership Conference. About 20 students with diabetes in the room, ready to discuss and engage each other and today’s leadership speakers who will be sharing incredibly valuable insight from the business of diabetes, health, communications, and so much more.
9:15am – Donna Petersen, Dean of the University of South Florida College of Public Health, is on stage to talk about how we define “health” in our society, and what we can do as leaders to connect the dots and inspire change in public health.
9:55am – Talking about challenges in public health, misconceptions, insurance policies, and brainstorming ways to change the systems that we all have to deal with, diabetes and otherwise. Cost and access to healthcare (in all ways, shapes, and forms) is a big theme in this discussion.
10:00am – Project time. Next we’re going to work together to determine each of our personal values. Values are the guiding principles that inform our directions, our choices, and our actions. This project will lead to a vision and an action plan for where the student leaders in this room are headed next. Exciting!
10:20am – Around the room, everyone has made a list of 20 values, and have whittled it down to 3. Trying to get focused here at SWD2014! In related news, a paper shredder has been requested to dispose of all evidence of values that didn’t make the value cut. This is proving to be a very difficult and telling exercise. And incriminating. Mostly incriminating.
10:25am – Break time. Low station has been found. I’m totally eating Spicy Nacho Doritos because I’m low. Honest. It’s for my diabeetus!
10:40am – Rick Gallegos, CEO of Dale Carnegie training in the Tampa area, to talk to us now about how you present yourself. Asking some questions about what people think about in presenting themselves. Answers include being dressed properly, being prepared, being able to speak publicly and communicate well. Fear of public speaking is greater than fear of death by fire, and fear of death by drowning (according to Rick…although if he had watched last week’s Game of Thrones, that list might be different. Popped like a grape!)
10:45am – Attitude is everything. “Of course I can do that!” And repeat. Hi-fives make for good reinforcement of the “Of course I can do that!” ‘tude.
10:55am – I met a nice lady at SWD2014 named Lauren. She met a dude name Martina. There is a story there. Something about using and not using middle names and initials, and how I’m sitting next to a complete stranger! (Lauren Nicole Johnson and Martin Allen Wood – Someone should probably separate us before we get in trouble for giggling too loud and being disruptive.)
11:00am – Learning how to associate names with a story when meeting people. From this point forward, everyone I meet is getting a superhero backstory. You’re welcome.
11:15am – Listening to Q&A among students. Getting to know each other. The conversation is absolutely fascinating, and the students with diabetes in this group are so interesting. Enjoy hearing how different (and not) we all are, and finding what we have in common (beyond just diabetes). Like how everyone here is a huge Heat fan! (Maybe not entirely accurate, but can we all just have that in common for the sake of this conversation?)
11:30am – Wrapping up with Rick Gallegos. Next, I’m up, talking about leadership and professionalism and what people look for in good employees, and applying that to both a career and your diabetes.
11:40am – Nicole here. Martin Wood is now speaking – teaching about real life with diabetes. “Been there done that and have the tattoo.” Love this guy!
11:45am – “Be memorable. Every experience you have is an opportunity to connect with someone else, diabetes or otherwise.”
11:50am – “There is no shame in sharing about T1D with colleagues. You judge yourself more than others judge you.”
11:55am – “You are not going to be successful if you hide who you are. Don’t discount your value.” – awesome speaker!
11:55am – Someone asked, “What is the one thing that you consider your biggest accomplishment?” Martin, “I’m still here. That is my greatest accomplishment. Despite diabetes, professional setbacks, personal setbacks, and everything that the world has thrown at me in my 35 years, good, bad, and otherwise, I am still here.”
12:00pm – Lunch break. Salad (healthy), half a sandwich (healthy), tomato soup (healthy), peanut butter cookie (totally healthy). Peanut butter is used to make peanut butter cookies, and peanut butter has protein in it, which helps maintain blood sugar levels, which means more peanut butter cookies. Science.
12:30pm – Mind blown during lunch today. Realize that my friend Gilles and I go WAY back. Neither of us realized the connection until today. Holy cow! (I’ll tell the story in a follow-up post, and put the link here. It’s a story worthy of its own blog post.)
1:15pm – Tom Boyer, the Government Affairs (and most knowledgeable person in the nation) person for Novo Nordisk. He is here to talk about government policy + diabetes = diabetes policy in government, and advocating on The Hill for people with diabetes.
1:30pm – Tom is talking about professionalism on the job. Dress appropriately, professionally. Don’t check your phone while talking and interviewing people. Don’t use your computer when a pen and paper will suffice (unless it’s your job, that’s different…don’t get carried away people). Focus on what is most important, which is the person you are talking to, and what the conversation is about.
1:50 – Since the SWD Leadership Conference is helping to prepare the students with diabetes for their summer internships in the diabetes biz, Tom is shining a light on other people who started with a job as an intern. — Brian Williams, Brooke Shields, Tom Hanks, Bill Gates, Lauren Conrad, Conan O’Brien, John Krasinski, Jodie Foster, Patrick Ewing, Anderson Cooper, Betsey Johnson (even if she did go bankrupt, she made a lot of money going bankrupt…so…successful), Steven Spielberg, Tom Ford, Roger Goodell, P. Diddy, Oprah Winfrey, Steve Jobs. Who says this blog isn’t educational?
2:10pm – “Show up early, work late. If you show up late and leave early, it’s going to be game over for you quickly.” – Tom Boyer
2:15pm – “In business, you have to manage people, and you have to manage money. Those are the two most important components that being successful in business comes down to.” – Tom Boyer
2:15pm – Activity time! Developing a personal Elevator Speech.
1. Make them care.
2. Make it easy to join.
3. Leave them wanting more.
4. Have a call to action.
5. Be natural.
6. Test yourself.
2:30pm – You never know when the opportunity to share your personal elevator speech will present itself. Define it. Refine it. Know it. Make it memorable. Make it actionable. Be specific about what you need next, and how the person you are talking to can help you to make it happen.
2:40pm – Imagine you have 60 seconds to nail your elevator speech. Every word is important. Every word has a purpose. Know what you are selling, intimately. Know what you are asking for, specifically, and always be closing (ABC people: Always Be Closing).
3:00pm – Wrapping up the Leadership Conference. This is the only program that the pharmaceutical industry has to identify interns with Type 1 diabetes. Pretty cool, connecting opportunities for people with diabetes to work in diabetes. The big SWD2014 conference kicks off in a little while. For now, a few hours break while we shift gears.
Saturday, June 7, 2014 – SWD2014 National Conference
After a fantastic and entertaining evening last night with actor, comedian, and diabetes advocate Jim Turner, followed by a dance party and socializing galore (like you do at a diabetes conference), everyone seems to have had a good night sleep (or a good hour or two of sleep), and we’re back for Day 2 of SWD2014. Here we go! Where’s my coffee?
9:15am – After a Zumba workout this morning and a nice healthy breakfast (eggs, cereal, coffee, a little more coffee, and there was also some coffee), Nicole Johnson is introducing our first speaker this morning, Mr. Mike Lawson from the Diabetes Hands Foundation and TuDiabetes social network, to share with us Diabetes Funnies. Mike is a graphic designer and also creates YouTube videos, and is a leading voice in the diabetes online community (DOC).
9:25am – Mike is sharing his stories of living with diabetes, and how he uses social media near constantly to laugh and live with diabetes. Solutions are sometimes right where we least expect them. Mike shares on social media a lot, and uses social media to help him and his diabetes.
9:30am – Seeing videos of Mike and Ginger Viera. If you don’t know Ginger (or would like to, because she’s ridiculously awesome as well), check her out on Twitter at @GingerVieira. Here is their video “Livin’ With Diabetes” on YouTube.
9:35am – Activity time! Questions that are often asked of people with diabetes, and the response has to be in sign language. But no obscene gestures, because this is a family show. Mostly.
9:45am – Now we’re creating diabetes meme’s from “Success Kid” and “Grumpy Cat” and “Not Sure Fry.”
10:00am – Break time, then in 15 minutes we are headed to breakout sessions. We’ve got discussions happening on Diabetes in the Workplace, The Insurance Zone, Pregnancy, Relationships (and everything that goes along with them), Diabetes and Exercise, and even Type 3’s (people who love and are a part of the lives of people with diabetes).
10:15am – In the breakout session with Tom Boyer from Novo Nordisk, talking about diabetes in the workplace and health insurance in the United States. Sounds like there are a lot of questions in the way of concerns when applying for jobs, seeking insurance and a fulfilling career at the same time, patient advocacy, and coworkers that don’t understand diabetes, among other issues.
10:20am – Tom is a big advocate for reading the newspaper every single day. He also shared that advice with our interns in the Leadership Conference yesterday. He starts every morning reading the newspaper, and finding out what is going on in the world. It’s one of the easiest things you can do to be ahead of the curve compared to your peers, and also to be well-informed so that you can make decisions based on current and more accurate information. This WILL lead to a better financial situation over the long term. (Do you do this? I’m a librarian, and I’m ashamed to say that I don’t even do this, though I do try and keep up via the internet. What newspaper(s) do you read?)
10:25am – “Find a job that has reasonable benefits.” Reasonable is defined as a robust level of coverage for YOUR needs (because individual and family needs vary). Also consider retirement options and the company’s match program (many companies will match your retirement investment up to a certain %). Also consider how long it will take before you are vested with your retirement, and if you will be at the job long enough to receive the benefit.
10:30am – “The greatest thing that has helped with health insurance in the last 30 years is the Affordable Care Act. Whether you like it or not, it’s the truth. The governor’s who are holding out are taking advantage of people with chronic conditions, and we are and should be extremely upset that the holdouts are threatening and taking advantage of us.” — Tom Boyer
10:31am – Q. How do we help to try and improve the situation with the governors and state legislatures of states that are holding out? — A. States are choosing to pass up millions of dollars from the federal government to withhold benefits to certain classes of people. Show up at town hall meetings and hold these representatives accountable and take them to task on the needs of people with diabetes and other chronic conditions. Letters no longer work effectively to contact members of the legislature due to security reasons, making it nearly impossible to interact with them via mail.
10:35am – Legislation in California, AB 1893, was proposed and seriously considered and debated to force people with diabetes to buy a sharps container for every 50 needles purchased (syringes, lancets, etc.). Some companies were in favor of this. Novo Nordisk, who was strongly against it, brought in advocates from the diabetes patient community to push back on the legislation, taking representatives to task, and successfully defended patient rights and helped kill the bill. Turns out the bill was backed by representatives who were benefiting from funding from companies who would have profited from the mandatory sales of sharp containers. Capitalism at its finest. Know who you are voting for people, regardless of what side of the aisle they are on.
10:40am – Politics have identified patients as the weak spot for fundraising and giving. In some states, they can accept corporate donations (under the table, soft money, not reportable), which inherently influences legislation.
10:45am – ADA and JDRF have not weighed in the extra $1,000 per year cost of the sharps container legislation. Students With Diabetes, American Association of Diabetes Educators, Diabetes Hands Foundation, the Pediatric Endocrine Society, and others are speaking up. Hold the people you partner with to task, and strongly urge them to advocate on your behalf.
10:50am – Rights in the workplace are always a challenge. Employers often mandate what employees can and cannot get covered by health insurance. In the case of denials, there is an appeal process, but it often requires data and support from your endocrinologist and healthcare providers. Continuous glucose monitors (CGM) and sensors are still challenging because many insurance companies consider CGM to be a “luxury item” rather than a necessity. Show them the data, your data, and take them to task. For pump hardware and supplies, refer to Medicare Plan B, and hammer the insurance company on it. Insurance companies are required to cover pumps and pump supplies, by law.
11:00am – Florida’s governor (Rick Scott) rewrote the insurance laws covering people in the state of Florida when he took office, essentially providing employers a way to not have to provide full insurance coverage to people with chronic conditions, and effectively making it much more difficult (if not impossible, in some cases) to get necessary prescriptions and supplies covered. — (Florida people with diabetes, remember this when you vote this Fall, and carefully consider whether you want to support someone to make decisions on your behalf that doesn’t support you in return. This has nothing to do with partisanship, and has everything to do with staying focused on what YOU need as a person with diabetes.)
11:02am – Employers are not allowed to ask if you have diabetes, or even dance around the topic. You are not required to disclose that you have diabetes at the workplace.
11:03am – Massachusetts has the most sophisticated health system in the United States of America, with the best doctors on the planet (Joslin, Beth Israel, etc.).
11:04am – In California, there is a purchasing pool that allows people to get health insurance no matter where they work or live in the state.
11:06am – In Texas, the rate of diabetes is skyrocketing (33% increase in T1 in children in the last 10 years). Diabetes is the #2 reason for hospital admissions in Texas. The best way to get diabetes health coverage in Texas is to be a woman with diabetes and pregnant.
11:08am – You are going to see a lot of migration out of states that do not offer proper health insurance coverage, or make it extremely difficult to get it, to states that are more accommodating to people and their healthcare needs.
11:09am – In Florida, the governor does not believe that healthcare reform is a priority. As a result, coverage is lacking. Students with diabetes can stay on their parents policy until they are 25 (or is it 26?), and are encouraged to stay on those plans and pay the discounted premium until the last possible date.
11:10am – The work that you will have to do to find health insurance in states whose leaders do not support the Affordable Care Act, like Florida, Texas, and South Carolina, is much greater than states who have embraced the federal mandates, like California and Massachusetts.
11:15am – 1. Keep your debt manageable as you progress and start your careers. 2. Live in a state that provides reasonable health coverage.
11:30am – Brian Fee, who has had Type 1 diabetes for 10 years, is an athlete and regular participant in marathons, duathlons, and cycling races. In this breakout session on Diabetes and Exercise, we’re talking about how to train and workout with diabetes.
11:33am – There are a few important factors when planning your exercise and training.
1. Set realistic goals.
2. Find a training program.
3. Prepare mentally.
4. Find supplements and equipment that fits and works for you.
5. Find help amongst friends.
6. Training should be informative and fun.
11:35am – At diagnosis, Brian, like many of us, was reminded over and over about what he could not do with diabetes. This inspired him to defy the odds and discover what he COULD do with diabetes.
11:40am – Managing BG levels while exercising is important for many reasons, including endurance, performance, and also safety. Important to test before, during, and after working out so that you can get baselines and know what is going on.
11:42am – Keep a journal so that you can track your progress. Track lows, highs, heart rate, and how you feel at the time (strong, weak, like you can do more, etc.)
11:45am – Brian is sharing some great advice about nutrition, hydrating, and fueling your body during exercise. Also stressing the important of safety, letting someone know what your plans are, where you will be when exercising (such as if you’re going on a long bike ride), and carrying your personal information on your body somewhere. Recommend Road ID, who makes bracelets and other accessories for identification and personal information.
11:49am – Sometimes the chains that prevent us from being free are more mental than physical.
11:55am – Matt O’Brien is a personal trainer with Triumph Functional Fitness. His brother has Type 1 diabetes, which was his first exposure to the world to Type 1 diabetes. He now has multiple clients with Type 1 diabetes, and also many more with Type 2 diabetes.
11:57am – You can pick up Matt’s book, The Magic Pill, on Amazon.com.
12:05pm – “Failure to plan is planning to fail.” Planning is key to getting the most out of exercise.
12:20pm – Lunch break. Then we’re going to hear all about the bionic pancreas (I am SO excited!).
1:45pm – Very excited about this presentation! Dr. Ed Damiano from Boston University is here to present “Making diabetes management disappear: A bionic pancreas for one and all.” – I want this…really, really bad.
1:48pm – Imagine two insulin pumps, one with insulin and one with glucagon, and wearing them together (with some fancy computer programming) to prevent blood sugar from going too high or low.
1:49pm – The bionic pancreas uses CGM to take the management burden of diabetes off of your shoulders. It will still require some maintenance activities (calibration fingerpricks for the CGM, change insets, refill reservoirs…same as today), but will be able to adjust itself to changes of insulin requirements. The programming makes it smart, and it learns your individual insulin needs over time.
1:50pm – The bionic pancreas is a device that will adjust automatically for ever-changing insulin needs (when you eat too much, exercise too much, get sick, whatever the case may be).
1:53pm – The inspiration for the creation of the bionic pancreas was David, Ed Damiano’s son, who was diagnosed with Type 1 diabetes when he was a child. The idea is to find a way to decrease the burden of diabetes on daily living. The goal with this project is not to find a cure. It’s to make living with Type 1 diabetes better.
1:56pm – Diabetes is absolutely relentless, and it is on you 24/7. We have the technology. We can make life with diabetes better by reducing the burden so that you don’t have to focus on diabetes so hard, and can focus on other things.
2:00pm – Started bionic pancreas research with trials on pigs, who will eat anything (true story), and whose pathology resembled the pathology of a human being with diabetes. The pigs, like humans, also liked McDonald’s. (I’m loving it! And I want the bionic pancreas!)
2:02pm – Studies for the bionic pancreas led to testing various CGM devices to determine if CGM could be relied upon to make insulin dosing decisions, and prevent both hypoglycemia (low blood sugar) and hyperglycemia (high blood sugar). The evolution of the research done over the past 10 years have led to better and better algorithms to manage blood glucose levels.
2:05pm – Recent studies only relied on weight to begin calibration, and 18 hours later the bionic pancreas algorithm figures out what your insulin needs are. Depending on insulin sensitivity, it may even take less time (if you’re more sensitive to insulin). In less than a day, the technology figures out how much insulin you need around the clock. Around the freaking clock! What?! I want this so bad right now! (This is me, on the verge of pitching a fit.)
2:10pm – Submitted dual pumps and iPhone (as the computer, locked out of apps and functionality not related to the trial) for testing and human trials to the FDA on October 31, 2012. 30 days later, on Ed Damiano’s birthday, they received approval to proceed with the trial.
2:11pm – Over the next year, the 2nd summer trials are taking place at Camp Clara Barton and Joslin Diabetes Camp, as well as a multi-center study. The multi-center study will be adults who wear the device around the clock, at home, and go about their normal lives for a few days without having to deal with diabetes decisions (again, outside of minimal maintenance). Expect both of these trials to go through January 2015.
2:19pm – Watching Ed Damiano demo the bionic pancreas technology, on an iPhone, with a Dexcom G4 custom attached. I’m having a hard time typing because I’m close to speechless.
2:22pm – Ed is showing his own CGM reading, and how even someone WITHOUT Type 1 diabetes spikes after food. To everyone in this room, he stressed not to beat ourselves up and stress out because we have a post-meal spike in blood sugar. It’s normal. IT IS NORMAL! A fully functional pancreas and immune system does not result in a flat blood sugar trend. It requires and should be corrected. That is NORMAL. It’s also normal.
2:26pm – Software makes it easy to teach the system how to define “usual” or “typical” when it comes to breakfast, lunch, or dinner. It gets away from defining diabetes based on hard data numbers that aren’t flexible, and are also sometimes unknown (like when you go out to a restaurant to eat and you have no stinking idea how many carbohydrates were in that plate full of deliciousness that you just stuffed into your face hole).
2:31pm – The bionic pancreas will also work without CGM by entering fingerprick data. Check your blood sugar at least 5-6 times a day and enter it into the system, and the bionic pancreas will know what to do and adjust accordingly. So you can take a break from the CGM to go to the beach for the weekend if you want, and the system will still know what to do. The bionic pancreas technology is smart, and it learns your insulin needs, and adjusts the insulin delivery accordingly over time.
2:34pm – Allows for a microburst of glucagon in the event that you want to do something cool like go swimming, and need to raise your blood sugar just a touch to accommodate for the increased activity level. Applies to other activities when you might want to disconnect your insulin pump as well. Like, “swimming.” With other people. When you don’t have anything to clip an insulin pump to. (Work with me here people!)
2:36pm – Now we’re learning the details of the Beacon Hill Study, which allowed participants of the study to traverse all over downtown Boston in a 3-mile area with a nurse in tow. The nurse was required for the study, just in case there were any problems (there weren’t, by the way).
2:41pm – The average A1C of the participants of the study was 7.1. The bionic pancreas got their A1C even better, without the hypo (low BG) episodes. Incredible!
2:46pm – In the 2013 summer camp study, which was trialed with T1D adolescents, the bionic pancreas system provided an average BG of 159.
2:50pm – The Bionic Pancreas Multi-Center Study is an 11-day experiment with the bionic pancreas where the patients can wear the system home, without a nurse, and even drive and go to work like they would any other day. No one has ever driven with the bionic pancreas, so this will be a first in more ways than one.
Pivotal Study: Mid-2015-mid-2016 (will be patients wearing the pump for several months).
Review of PMA by FDA: Late 2016-mid-2017
Bionic Pancreas IS ON TRACK to be completed and FDA-approved by the time David (Ed’s son) goes to college.
For more information, visit the Bionic Pancreas on the web at www.bionicpancreas.org.
2:55pm – Now we’re going to hear from Scott Scolnick, who was a participant in the Beacon Hill Study. He was participant number B23, and this is his story about that experience.
Messages heard and learned along the way:
– There will be a cure in 10 years.
– I likely would not live to be 40.
– I could still ski.
– The looks and comments.
– Need to think/be aware about EVERYTHING that I DO and EAT.
Scott (and me) recommend the book “Diabetes Burnout” by Bill Polansky, Ph.D., CDE. Bill is one of my favorite people in the diabetes field, and deals with the mental and emotional impact of diabetes on the people who carry that burden day in and day out.
3:00pm – Scott is committed to living well with diabetes for himself, and also for his three daughters.
Scott is also an avid foodie. Check out his site InsulinWorthy.com to figure out if what you eat (in Boston, for now) is worth the insulin you have to take to cover it. I wish I had known about this site when I was in Cambridge last summer. Very cool!
Scott is a major Boston Red Sox fan. He has a dog named Fenway, and changes his glasses every time that the Red Sox lose. Major fan.
3:08pm – Scott participated in the Beacon Hill Study for 6 days/5 nights. His goal was to eat his way through Boston, and try to break the bionic pancreas and the algorithm. In his words, “There was no food that was safe from me. Nothing!”
After 24 hours of being on the bionic pancreas and eating 5 slices of pizza, Scott’s BG spiked to 202, and came down much faster than by manual bolusing (with pens or typical pump). Because the system was doing such a good job of learning Scott’s diabetes, it was able to adjust and predict based on his particular diabetes needs.
3:13pm – On Friday of the study, Scott told the nurse traversing around Boston with him that he didn’t want to know what his blood sugar was anymore. It was the most freeing feeling not having to know, and not having the burden, and not having to think about diabetes. It allowed him to enjoy everything else so much more.
(Note: There are tears rolling down faces in the conference right now. This story, and the idea of not having to carry the heavy burden of diabetes, and the technology being so close to a reality… It really feels like a dream coming true.)
3:20pm – On the drive home, after the Beacon Hill Study ended, reality set in. Now Scott had to go back to managing and making decisions about and being the control freak about his diabetes again, and it was a harsh reality to have to face after 6 days/5 nights of not having to worry about diabetes and make diabetes decisions at all. And it comes in waves, even still.
The bionic pancreas is real. Scott says if he couldn’t break it, then it is definitely real. And it’s coming. And I want it. Have I mentioned that?
3:30pm – Very excited to hear the beloved Joe Solowiejczyk talk next about his more than 54 years with diabetes. And something about diabetes and risky behaviors. Check out his website, www.amileinmyshoes.com.
3:40pm – “If you’re not doing risky behaviors, then you’re really not alive. The only thing that gets in the way of the risky behavior shit, is the diabetes shit.” I love Joe Solo. He’s the best, and tells it exactly like it is.
3:45pm – Discussing the most important reasons of why you take care of yourself. A lot of reasons being shared. What are the 3 reasons why you take care of yourself and your diabetes? (Feel free to sound off about any of this stuff in the comments. Go nuts!)
3:55pm – “A big thing about living with a chronic illness is to not try to fix it, but to figure out how to guide it and go with the flow.” – Joe Solo
4:00pm – Next question: What are the 3 most common reasons/things that make you NOT want to take care of yourself? What are the obstacles that get in your way? (Answers shared include: There is no finish line. I don’t want to be a slave to the machines.
4:10pm – Diabetes is… “You go to bed with a 92, you wake up with a 220. What the hell? Did I dream of eating pizza?!”
4:15pm – Joe Solo Day – Schedule your diabetes depression days. Call a friend and say, “Hey, on Tuesday between 9am and 5pm I’m going to have a diabetes day and feel sorry for myself, and I want you to call me every hour and tell me how courageous and inspirational I am and how much you look up to me, etc. etc.” Then go and buy 2 pints of Ben & Jerry’s ice cream, and 5 tragic movies that will make you cry. You really have to ham it up. Then eenie-meenie-minie-mo until you pick the ice cream that you want, and you start. About an hour in, the phone rings, and people start telling you how courageous and inspirational you are, and you tell them, “Hey, thank you, that’s great, but the movie just started, call me back in an hour and tell me more” and hang up. An hour later, the phone rings again, and it usually only takes a few phone calls to wrap up your diabetes depression day and you’re ready to go again.
4:30pm – Next: What are the 3 ways in which you check out from taking care of yourself with diabetes? (Lots of group discussion. We all do it, from time to time. You can’t be “on” with diabetes all the time, even if life with diabetes does demand it.)
4:50pm – Joe Solo wrapped up a very entertaining and encouraging talk. Next we are taking a group picture, and then dinner, and then pool party at 8pm. Probably the last you’ll hear from me today. See you tomorrow! (MW)
Sunday, June 8, 2014 – SWD2014 National Conference
Dinner with D-friends at The Pub (Irish restaurant in Tampa) last night, followed by a pool party and a really nice chat with my friends Scott and Emily (check out their company Pump Peelz), followed by great conversation and friends in the hotel common area. I need more nights of chatting up people with diabetes, and talking about things both D and non-D related. The people here at SWD2014 are truly some of the best people in Martin World, and if you’re here next year, they can be some of the best people in your world too. I cannot recommend this conference enough if you are a young adult with diabetes. This is a safe place, where people understand the burden of living with fingerpricks and multiclicks, and where they give you the strength. courage, hope, and support to keep going.
9:15am – Nicole Johnson is welcoming everyone to the closing day of SWD2014. A lot of tired faces at breakfast this morning from a late, late, late night of socializing and sharing stories and experiences. Next up to talk to us about Diabetes Advances is Dave Joffee, a pharmacist and diabetes educator.
9:20am – Richard Bernstein was an electrical engineer that figured out that you could count carbs, check your blood sugar, and dose your insulin accordingly. The ADA didn’t support this way of thinking initially, but came around to the realization that Dr. Bernstein was onto something after many years. Bernstein is a proponent for a low carb diet (but we know, your diabetes may vary (YDMV)). His book, Dr. Bernstein’s Diabetes Solution, is a bestseller for those wanting more info on low carb diet.
9:25am – Novo Nordisk has a professional cycling team of people who all have Type 1 diabetes. For more information on Team Novo Nordisk, founded by Phil Southerland, check them out at www.teamnovonordisk.com.
9:35am – Diabetes technology has gotten more and more advanced over the years. Real-time continuous glucose monitors, audible BG meters that yell your blood sugar level at you (okay, maybe that’s not EXACTLY how Dave said it…but still), and strips that require less and less blood compared to years prior. Technology is making living with diabetes better and better, but also more complicated because there are more and more data points and variables to take into consideration.
9:40am – With all of this technology, we get stuck in habits with our diabetes and don’t use it. Not all technology works the way it was intended (e.g., air pressure injector for insulin).
9:42am – “20% of people who get an insulin pump continue to use it after 1 year. 80% abandon it, or don’t use it exclusively,” says Dave Joffe. This is why getting coverage of diabetes technology by insurance is problematic. The insurance company’s return on investment is low because the technology is not used and results in the same costly hospital visits or complications. (MW: More than half of the people in this room have an insulin pump right now, and many of those (with and without pumps) have a CGM. Doesn’t seem like they are inclined to take it off and change their routine to one that doesn’t include the technology, which conflicts with what Dave reports. Maybe it was an insurance company that did that research.)
9:48am – We can have all the technology in the world to help us, but when insurance companies refuse to cover it, it isn’t helping us. Cool new technology is only helpful if we, people with diabetes, who live with this disease day in and day out, can get it. Insurance companies making access to the technology that we need prohibitive drives me bananas! Like mine is doing with my Dexcom sensors right now. I have to appeal every month to my insurance company and convince them that yes, I do still need CGM sensors. Stop making me prove it every single month! </rant>
9:55am – Checking out insulin pumps. Animas, Medtronic, OmniPod, Asanti Snap, T:Slim. It’s like diabetes show and tell in here. Nothing incredibly new though.
9:58am – The idea of the design of the T:Slim pump is that if the pump were to malfunction, it wouldn’t dose 300 units from the reservoir into you without you knowing it. It would be limited to dosing only a small amount of insulin upon malfunction. (Seriously, has this ever happened? Even once? Chime in if you know, and I’ll update the live blog accordingly, but just seems like a scare tactic to me.)
10:00am – Insurance companies are trying to push people on injections back to R and NPH insulin, especially those with Type 2 diabetes because their use of insulin is often sporadic, and doesn’t merit the cost of the faster-acting insulins (Novolog, Apidra). For-profit insurance thinking, also driving me bananas.
10:05am – The trend in fitness tracking is adding even more data to the equation. All of these data points give us more and more things to make decisions on. There is a balance between having enough and too much information, and each person (with diabetes or otherwise) is going to have a different threshold for what is considered sufficient info.
10:10am – There are so many fitness apps on the market for smartphones. Pick one that works for you, and stick with it. (MW: I use the Weight Watchers app…because I’m a fat kid like that right now. I can’t express how difficult it is for me to track what I eat at every single meal and between meals, especially while traveling and working. Some weeks I do better with it than others. I also like the GoMeals app, and the FitBit app (though my FitBit itself only worked properly for a few short months). What fitness or tracking apps do you use and like, and why?)
10:15am – Next we welcome Tye Manor back to the Students With Diabetes National Conference for the 2nd year in a row to give us Leadership Principles to Live By. Last year he spoke at the SWD Leadership Conference, and this year we are excited that he is here to share with all of us.
10:18am – To be effective consistently, you fake it until you make it.
10:19am – Tye Manor. Pronounced “main-or.” Not “manure.” His joke, not mine.
10:21am – The most effective leaders have to listen well. They listen to understand. They do not listen to respond. They listen to everybody: coworkers, customers, children, everyone.
10:28am – Limit the amount of distractions in your world. When someone comes to talk to you, put your phone down, close your laptop, pick up a pad and a pen and listen with your full attention. This is an effective way to get things right the first time, because you listen to understand, rather than just to respond and move on to the next thing.
10:29am – When talking and working with other people…
1. Let the speaker speak.
2. Let your attention show. Show them that you are comprehending what they are saying.
3. Take notes. Do not trust your memory. Your memory will let you down. “The weakest ink will outlast the strongest memory.” Or “Don’t just think it, ink it.”
4. Concentrate. Train yourself to stay in the now, and not let your mind go off in other directions.
5. Pay attention to all of the details.
6. Pause. Think about what the person you are talking to is saying. People won’t think you are dumb if you pause. They will realize that you are giving careful consideration to what they said and/or how you want to respond.
10:42am – Leadership: The “L” stands for “listening.” Listening is the hardest thing you have to do all day long.
10:43am – LEadership: The “E” stands for “energize.” Leaders energize and inspire the people around them. Your job to be an effectively leader is not to lead people to water, where it is up to them whether they want to drink or not. Your job is to make them thirsty.
10:46am – LEAdership: The “A” stands for “action.” If you’re going to be successful in life, you can’t wait for things to happen. You must take action.
Check out Tye Manor’s book “Forget Patience, Let’s Sell Something” (if you didn’t dash up to the room and grab a copy out of his hands during his presentation).
10:49am – Keep moving forward. At any rate, fast or slow, keep forward motion. Success is the realization of a worthy goal.
10:51am – LEADership: The “D” stands for “develop a purpose.” Purpose will keep you moving forward despite your circumstances.
10:58am – Courteous determination (pushing through the “no”) is how you get to your goals.
11:05am – Fear is instilled in us to create action. Fear was never instilled in us to create paralysis. Purpose will give you the strength to face any brutality that is going on in your life. Being interested in being successful is not enough; you have to be committed to being successful.
11:08am – LEADErship: The “E” stands for “enable.” Some of the biggest mistakes in the world make money (e.g., Post-It Notes…who comes up with glue that won’t stick to anything? And now it’s a billion dollar industry.) 3M, the company responsible for Post-Its, enables their scientists at least 30% of their time to tinker and create new things. Many of them are failures, but some of them are successful or contribute to success of other products as well.
11:11am – LEADERship: The “R” stands for “reach out and reach back.” Always contribute and give back to your community, no matter how you define “community.” That is what defines you, gives you passion, and helps you fulfill your purpose.
11:15am – LEADERShip: The “S” stands for “self control.” Self control is extremely important as a leader.
11:18am – Now we’re talking about pet peeves. People parking in handicap spaces who are not handicap, people who don’t use their blinkers when they change lanes, grammar mistakes, being late, people who drive slow in the passing lane on the highway (a lot of really frustrated drives in this room…sheesh!).
11:23am – Now on to courteous behaviors. Saying thank you, smiling back at people, when a stranger tells you that you look nice (and they aren’t a serial killer), when someone at the grocery store lets you cut line, says “bless you” when you sneeze.
11:28am – LEADERSHip: The “H” stands for “handle relations well.” Always assume positive intent. Make it automatic. Practice. For example, when someone speeds by you on the highway, assume that they are on their way to help someone, and hope that they get there in time and safely.
11:32am – There is very often more than one way to accomplish a goal. Don’t assume that there is only one way to do something. Expect a different perspective.
11:41am – LEADERSHIp: The “I” stands for “integrity.” Who are you when nobody else is watching? That should be the same person that you are in public.
11:42am – LEADERSIP: The “P” stands for “positive.” Everyone has something that they are wrestling with. It’s human nature for us to focus on everything that is going wrong in our lives, and when we do it is hard to see the positive aspects of our lives. A child comes home with 5 A’s and 1 C, and we focus on the C instead of the 5 A’s.
11:46am – Last year, Tye lost his wife to breast cancer. It was the hardest thing that he has ever had to deal with, losing his best friend. (You can hear a pin drop in this room. None of us knew.) He shares that he could focus on that loss, but instead chooses to be thankful for all of the things that he has in his his life that are positive: His children, his family, his work, his church, etc. Starting tomorrow, Tye is starting a grief ministry at his church, to help other people who are dealing with grief and how to get through it in their own lives.
And you can too!
11:50am – SWD2014 is coming to a close. Nicole Johnson, Miss America 1999, Dr. of Public Health, and Executive Director of Bringing Science Home and Students With Diabetes, is on stage to share her story with diabetes, and call everyone here with diabetes to action, and encourage them to take everything we have learned home.
11:51am – Why do we do this with Students With Diabetes, have a national conference, and get people together from all over the United States? Connection, education, motivation, inspiration, and action.
11:57am – Nicole was diagnosed with Type 1 diabetes when she was in college. She was told she couldn’t compete. She was told that she couldn’t have kids. She continues defy the odds and advice of what she can’t do with diabetes, and has made it her mission in life to help others who are living with diabetes. Along with her daughter, Ava, who is perfectly healthy and has as much fun being around people with diabetes as the rest of us.
12:03pm – The SWD Internship program applications will be due by December this year. This is an incredible opportunity for students with diabetes to get paid internships in the diabetes business.
12:05pm – Planning for next year’s conference starts next week. I will be there, and I hope you will be too. Until next year at SWD2015, from Tampa, Florida, thanks for joining me for the live blog for the past three days. Be well, and keep in touch!–MW
I’ve always wanted my own library. I wanted to be a permanent resident in a place of knowledge, where dreams are created and nurtured, where there is a near-guaranteed payoff for time well spent, where I could inspire people to imagine possibilities and achieve the unexpected, and where I could make a positive difference in the lives of others.
After several years of leading a creative project management and development team, I moved to south Florida in 2004 chasing love and the dream of becoming a library success story. It wasn’t long before I developed aspirations of finding my way to the top, where I could lead and inspire others to dream even bigger than I could on my own. After some hard years of clawing my way up the corporate ladder, and learning and losing more than I had bargained for both professionally and personally in the process, I relocated again in 2009 to venture into the unknown territory of the accidental medical librarian.
The past five years have had both ups and downs, but these years have ultimately been rewarding, and have provided me plenty of opportunities to grow personally and professionally. I am proud of the things that I have accomplished as a medical librarian, as a diabetes advocate, and that I have had the opportunity to play a role in inspiring the people around me to achieve. In our medical library, we are a team, and our success is as dependent on each other as it is on ourselves and our individual accomplishments. And we’re only just getting started.
I am so excited to share the news that, as of today, I am the Director of the Charlotte Edwards Maguire Medical Library at the Florida State University.
I have worked extremely hard to get to this place and to tie all of my little worlds together into one big dream where my passions can coexist. I’ve had some great support. And Amanda has had the patience of Job. So I’m going to take a few moments to enjoy this accomplishment.
And then I’m going to change the world.
I am pleased to inform you that after a national search, Martin Wood has been named Director of the Charlotte Edwards Maguire Medical Library at the FSU College of Medicine, and promoted to Associate Librarian.
Martin graduated from Florida State University, twice, where he acquired a Bachelor of Science degree in Mass Communication, and a degree as Master of Library and Information Studies. He is also a graduate of the Harvard Leadership Institute for Academic Librarians.
After years of experience with the Florida Center for Prevention Research and in the Global Research Library for Franklin Templeton Investments, a Fortune 500 company, Martin brought his skills in technology, business, communications, education, and research to the Maguire Medical Library. Martin started at the College of Medicine in 2009 as the Head of Electronic Resources and Technical Services, and shifted the library’s definition of “collection” to focus on those electronic resources with the greatest potential for positive impact on patients at the point of care. He was promoted to Assistant Director of the medical library in 2012, and then Interim Director in March of 2014, overseeing electronic resources, collection development, scholarly communications and open access publishing, systems, web services, and public services.
Complimenting his leadership of the Maguire Medical Library team, Martin was elected and served as the President of the Florida Health Sciences Library Association in 2012-13, and has been the Chair of both the Strategic Planning and Nominating Committees in FHSLA. Martin is a Senior member of the Academy of Health Information Professionals (AHIP) with the Medical Library Association (MLA), and also represents Florida State University as a member of the Florida Collaboration of Academic Libraries of Medicine (FCALM), the Southern Chapter of the Medical Library Association (SC/MLA), the Consortium of Southern Biomedical Libraries (CONBLS), and the Association of Academic Health Sciences Libraries (AAHSL).
In addition to his accomplishments in the medical library field, Martin is also a leader and outspoken advocate for people living with diabetes, and serves at the local, state, national, and international levels to improve the lives of people with chronic conditions. Martin is a well-known blogger and patient advocate in the diabetes community, and was recently appointed to the JDRF International Type 1 Diabetes Voices Council in Washington, DC. He is also a faculty advisor for the Students With Diabetes organization, which aims to create a community and connection point for young adults with diabetes on both college campuses and in local communities across the country.
I want to thank the members of the search committee for their due diligence in reviewing a number of qualified applicants, and confirming for us the real jewel we have at the College of Medicine. Please join me in congratulating Martin, and thanking him for his leadership as he continues to direct the medical library team and oversee the services and resources that have made the Maguire Medical Library the model academic digital medical library for the 21st century.
Frequency is a very interesting thing in Diabetesland. We base our lives on frequency. Frequency is in how many times a day we check our blood sugar, to how many times a year we see our endocrinologist, to how often we exercise, to how many showers we take a day (or week, if you’re kind of a Stinky McStinkerson).
Just like daylight is defined by the existence of night, frequency is sometimes most obvious when it is absent. For example, it’s much easier to spot a day or a week of not checking your blood sugar when you’re accustomed to checking it eight times a day. However, if all you do is one fingerprick a day, then a few days of no fingerpricks at all really doesn’t seem like that big of a deal.
I find that is where I am with sharing my life these days on my blog, in real life, about diabetes and otherwise. My frequency of sharing has diminished over the past long time, where I now find the task of sharing much of anything with other people extremely hard. And I don’t notice when I’m not opening up near as much as I used to, because my normal now is being guarded and closed off from others. I’m even guarded with those that I care about and who care about me the most, with very few exceptions.
But I have so much to share. So I have to figure out how to get past this being guarded baloney. I have to let my defenses down a little, and teach myself how to share Martin World with complete strangers and not so strangers, like I used to. I miss sharing, and I miss the conversation, and I miss the empathy and “Aha!” moments that come with the sharing of a story.
I have to learn how to trust that people aren’t going to hurt me with what I have to share, and have the courage to just put whatever it is that I have to say out there, and I’m finding it extremely difficult to begin. Again.
That is what this post is about. I’m sure I have some very poignant blog posts bottled up in me somewhere. I’m sure I have some ridiculous, hilarious, and emotional posts as well. So much has happened over the past long time that needs sharing. The list is very long, and I have been very selfish by keeping it all to myself. I apologize for that, to you and to me both.
My goal is to start to share again. I have so much catching up to do. I may pull from my experiences today, or I may pull from events that happened months and months ago. The goal is to share, and in the process of sharing I’m hoping that I can beat the demons inside of me that make me afraid to open up. I need the conversation. I need the attention. I need to feel closer to people, rather than so detached. Maybe we all do.
Some of what you read after this post will be diabetically speaking, and some of it won’t be. But it will all be right here at Diabetically Speaking. Because I just renewed my hosting plan. And because it’s me, Martin Wood, and I have a story to tell.
Frequency, to be determined.