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Diabetes at AADE’14

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.

The Case for CGM

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.

How about…

…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.”

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD008101.pub2/abstract

…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.”

http://www.ncbi.nlm.nih.gov/pubmed/21917132

…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.”

http://www.ncbi.nlm.nih.gov/pubmed/22208716

…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.”

http://www.ncbi.nlm.nih.gov/pubmed/20332354

…real-world benefits of CGM. “Personal CGM, in a real-world setting, improves glucose control and reduces the rate of severe hypoglycemic episodes.”

http://www.ncbi.nlm.nih.gov/pubmed/20551007

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.

CGM Double Down Arrows

Update, 7/30/2014:
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…)

Update, 8/21/2014:
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.

Be Yourself

All of my friends seem to wish that they were somebody else. It is evident by what they share online. Daily, and sometimes even hourly, I’m seeing a “You are _______.” post on somebody’s wall or news feed. Insert into the blank a Star Wars character, Disney princess, Marvel superhero, Downton Abbey character, Game of Thrones character, Lord of the Rings hobgoblin, or Chinese food combo. I’ve even done one myself; I am Han Solo from Star Wars.

While it was fun and all, I hope that all of these “Who are you?” character quizzes cause us to think for a minute about who we really are. Sure, we can aspire to be like these superheroes and villains, who are really just exaggerations of the best and worst parts of ourselves. At the end of the day though, I hope that we consider that we are a sum of all of our parts, not just one dimension of some fictional character that someone is going to argue nearly four decades later about whether or not they shot first in a bar scene. (Han DID shoot first, by the way.)

Speaking of characters, I like the people I am friends with online. Social networking is important to me, and allows me to feel a connection to people when I can’t be with them in real life. I have friends all over the world, and it’s just a physical impossibility for me to be with them and experience all of the amazing moments of their lives as they happen. That is why I am so thankful for social media, because they can share their adventures, and I can feel like I know that they are doing okay (or not, sometimes), and can be a part of their world virtually and emotionally when I can’t be physically.

Social networking is important for my life with diabetes as well. Living with diabetes (regardless of what type of diabetes it is) can be very lonely. Diabetes is one of those situations where I can do everything right, and still feel like I’m doing everything wrong. Diabetes is also a situation where little wins are cause for celebration, and not everybody in the world is able to understand why. The advantage of social media and the Diabetes Online Community (DOC) is that there is always someone else out there in the great big internet world who is experiencing the same thing that I am, and gets it.

People with diabetes (PWD) need people with diabetes. People with diabetes understand the frustration with a high blood sugar that I’ve had all day because I carb’d out on pasta last night. People with diabetes understand that low BG that I keep feeding and feeding to the point that I’m actually sick of eating. People with diabetes understand that having sex while wearing an insulin pump may not seem all that sexy. They also understand that saying you are bionic as you disrobe with said insulin pump makes for a pretty good pickup line.

Trust me, I’ve done it.

Every day we get up and work hard at becoming someone else. We send our representative out into the world to go to work, go to school, go to meetings, go on a date, go pick up the dry cleaning, or go grocery shopping. We rarely let our true self out of the cage to run free in the world. That would be like opening Pandora’s Box, and we would never get that level of crazy back into its proper container.

The crazy thing is that we sometimes get so carried away with trying to be someone else, be what the world wants us to be, and fit into someone else’s expectations, that we forget to be who we really are. I was in a meeting the other week with a salesperson from a publishing company, and as I was sitting around the table talking with her and my library colleagues, I went low. The low outran my CGM, and it didn’t alarm until I wasn’t able to talk and make sense anymore. It was so incredibly embarrassing, it was frustrating, I sounded a lot like a malfunctioning R2-D2 with not being able to get my words out, and it made me want to crawl in a hole and die.

Fortunately, I had my coworkers, who I am so grateful for, who were there to help, and tried their best not to make me feel anymore self-conscious about it than I already did. That type of ugly low is one reason that I’ve hid diabetes for the greater part of my life. It takes a conscious effort for me to NOT hide my diabetes, even from those people that I spend more hours with than anybody else. Those ugly low BG episodes are not at all how I want people to remember me. What I did and said while I was low is not the impression of me that I want people to leave with, not ever. But sometimes I don’t have a choice. Sometimes, low BGs happen. These moments make me hate diabetes.

More importantly, these moments make me take some time to make sure that I don’t hate myself. Because diabetes is not my fault. A low blood sugar is not my fault. What I do and say while I am low, as hard of a pill as it is for me to swallow, is not my fault. A low blood sugar is a side effect of insulin. It is a side effect of too much activity and not enough carbohydrates. It is a side effect of having diabetes, and having to try and make precise decisions about what your body needs (insulin and food) manually, using numbers and math, while everybody without diabetes is able to do it automatically.

I wish I was a superhero sometimes. I’d like to be Wolverine, where I could just heal myself and fix my immune system and cure my diabetes once and for all. I’d like to be Han Solo, where I could pirate diabetes supplies all over the galaxy for the people who need them most, and get the girl and the Wookie best friend in the end. At least I’ve got this mini-Wookie.

This is not the droid you are looking for. This one is mine.

No matter who I wish I could be, the reality is that I am me. I have diabetes, and likely always will. I will have low blood sugars that I need help with, and I will have high blood sugars that I need insulin and patience to deal with. Just as important, I will always need other people with diabetes. Whoever they wish they could be in their own world, in mine, I am glad to know them for who they are.

Low Interrupted

At first, I was thinking that I would toss out this post, or save it for later, in order to respond to the news from the Diabetes Research Institute. I know that a post like this, full of words on a screen, risks getting lost in the mix. But maybe it won’t.

If you read my last post, you know that A-Flizzle surprised me with a birthday trip to Jacksonville to tour the Budweiser brewery, hang out with Jacquie and the gang, get a massage, and go to one of my favorite restaurants in the whole wide world called 13 Gypsies. And my blood sugar spiked sky high. So now you’re caught up. As Paul Harvey would say, this is “the rest of the story.”

I’ve been sitting on this post for a few weeks now. It’s been a really hard thing for me to share. It’s the post I’ve been waiting to write for, like, 23 days.

My blood sugar was sky high, but I couldn’t very well call in diabetic and cancel a quality birthday celebration. Nor did I want to. I bolused for the high, but having been unplugged from my pump for as long as I was, there was really no telling how much insulin it would take to turn things around and get my BG’s back to normal. I knew I would need to feather the insulin over time in small doses so that I didn’t get a big ball of insulin hitting me all at once. It sounded like a good idea, at least. Until it just wasn’t working. Not even a little bit. Not even at all.

So, I did what any abnormal person with a nonfunctioning pancreas would do in the situation: I rage bolused the $h!t out of that high to show it who was boss. And I did too.

Later that night, after we had gone out to a rooftop bar and then to one of our favorite hangouts in 5 Points, Birdie’s, A-Flizzle and I trekked back to our hotel to call it a night. We settled in, I stretched out on the bed, propped my head up on a stack of pillows, and started watching one of the greatest movies of all time that just happened to be on TV that night: Con Air. What? You know you love it!

A-Flizzle was sound asleep, and I was laying there in bed messing around with my iPad and watching Cyrus the Virus battle The Man of Nomadic Eyebrows from the Land of Forgotten Forehead (aka, Nicholas Cage) for a shot at freedom via a crash landing on the Las Vegas strip (don’t blame me, I didn’t write it) when it hit me. Hard. And I remember every single part of it.

In an instant, I had absolutely no clue where I was. I couldn’t figure out what I was doing, even though I was doing nothing. I couldn’t think. I couldn’t concentrate. I couldn’t help overanalyzing every next thought that was popping into my head, and I had no control of what was popping into my head next.

I sat up and threw my legs over the side of the bed. My bare feet hit the cold wooden floor. I sat there, in a complete panic, trying to figure out what was going on. I knew what was going on. I just couldn’t quite figure out what was going on. But everything was so serious. I couldn’t figure out what was happening, what was next, what I should do.

I stood up. I walked over to my BG kit, and sat it on the table. I walked off. I started pacing around the room, stomping hard, trying to figure out what in the world was going on. I could see A-Flizzle in the middle of the king size bed, sound asleep. I tried to yell for her, but I couldn’t. No sound would come out. I started hitting my diabetes tattoo, indicating, trying to make noise and get her attention. Anybody’s attention. But it wasn’t loud enough.

And that’s when it hit me: I was low. Really, really low. And I was standing in the room with the one person that I trust more than anyone, and I could not for the life of me (literally) figure out how to get her attention. What would be so simple any other time, to simply yell or reach out and shake her awake, I could not figure out how to tell my body to do. I just knew that this was really, really serious, and I had to figure out something through my garbled thoughts.

I paced around the king sized bed like a tiger walking a perimeter, establishing his territory. Back and forth, from one side to the other, for I don’t even know how long. All the while I’m trying to figure out how to wake her up. I was fading. The panic was wearing me out. I was starting to think about what A-Flizzle would do without me, and how much it would crush her to lose me when she was right there, so close. What would happen to my Hopper (dog), Squirt (cat), and Bindi (A-Flizzle’s dog) back home without me. How their little hearts would break when I didn’t come home from a weekend away. How my Hopper would continue to look for me at the door long after Amanda got home, just waiting on me to get there to give him a doggie hug.

All I could think was, “This might be the one. That one low blood sugar that I don’t survive. The big one.” I was also thinking, “Dammit, I don’t want to go to the hospital on my friggin’ birthday!” I started punching the corner of the bed because I was so frustrated that I couldn’t get my body and brain to communicate and work properly. Then I thought of big ones, like the big earthquake in California that everybody always talks of but hasn’t happened yet. The hurricane that will come and sink Florida. The importance of having an emergency plan, a parachute. A parachute? A PARACHUTE! For when I fall!

I managed to figure out that if I passed out from the low, it was my pump that would continue to give me insulin and keep me low. I snatched it from my PJ pants pocket, and unhooked it, not bothering to suspend it, and threw it on the bed. I went over to my bag, and found the glowing bright red rectangle that contained glucagon, and held it tight in my left hand. I knew that if I passed out, A-Flizzle would likely hear me hit the floor, and hopefully see the glucagon in my hand and know what to do. If she didn’t, at least my pump was off, so hopefully I would survive long enough for my blood sugar to come back up naturally before…well, before I died.

As I was digging in my bag for that, I uncovered a Level gel. I ripped off the top with my teeth and managed to get most of the gel in my mouth through the lack of motor skills and shaking that I didn’t realize was happening. Once I got the Level gel in me, and gave it time to work, I was finally able to figure out how to reach over and wake A-Flizzle up to help me. By then I was back on the edge of the bed, drenched in sweat, shaking, still holding the glucagon case in my left hand, and completely physically and emotionally exhausted. Half asleep, her training that I taught her in case I ever go low kicked in, and she was able to retrieve two more Level gels and help me get them down before I had to lay down, else pass out from exhaustion. Still, I wasn’t up to a normal and safe BG level yet.

A-Flizzle set a timer on her phone to wake us up every 15 minutes for me to test my BG again. After an hour of that, I was still only at 70. Not too low, but certainly not high enough to go to sleep after such a bad low. I took one more Level gel, and then I was out for the rest of the night. I woke up the next morning at 96. Normal. And completely hungLOWver, worn out, physically and emotionally exhausted from the night before.

I’m thankful that I taught A-Flizzle what to do when I go low. I’m thankful that we have a plan and always know where things are to treat a low, even if half asleep. It’s so important to have something available to treat a low blood sugar, and know where it is even in your subconscious. That is what may save you in the event that you have to build your own parachute. I know it did me. It’s been extremely hard for me to admit to myself, but I know that I wouldn’t be here right now had I not had those gels, known where they were, and the fact that they were easy for me to get into when it was literally life or death for me.

Tomorrow, the DRI is set to share some big news about steps toward an eventual cure for diabetes. I really hope it is everything that we hope it will be. I’d be lying though if I didn’t admit I’m skeptical. Don’t confuse that with negativity. I’m positive that there will be a cure someday, and I’ll be the first one to celebrate tomorrow if there is something to celebrate. I’ve just heard that a cure was coming since my mother was told that there would be one when I was diagnosed at age two, 32 years ago. A cure for diabetes is exactly what every one of us with diabetes, and every parent of a child with diabetes, wants in this world. Nobody should have to see their life flash before their eyes on their birthday because of a low blood sugar like I had to. However, hoping and praying and wishing doesn’t get us closer to that day.

I’ve learned to keep myself grounded in reality. Maybe that’s a defense mechanism so that I’m not constantly let down, but experience says to be patient, diligent, and steadfast today so that we can make it to tomorrow. The absolute best thing we can do is take care of ourselves today, support each other in the diabetes community, both online and offline, and not let our fellow person with diabetes stumble. You can do this, and so can I. Then, when that cure does arrive, whether it’s tomorrow or twenty years from now, we’ll be ready.

D-inked

For this (sort of) Wordless Wednesday, I bring you the live tweeting and photo adventure of getting a diabetes tattoo. Big ups to Matt Manning at Monument Tattoos in Tallahassee, Florida for listening to what I was looking for and translating that into a wicked awesome piece of body art with a practical purpose. One of my low blood sugar tells is that I sometimes lose the ability to talk and communicate properly. This is especially problematic when I need to get someone’s attention and make them aware that I need a little help. The idea behind a diabetes tattoo was that it would be something that is always on me, and I could hopefully indicate (e.g., point to it, gesture at it, hit someone over the head with it) in the event that I need some assistance. And it would look awesome as sh**. Your diabetes may vary.

Monument Tattoos - Diabetic - 07-20-2012

Photo courtesy of Monument Tattoos

Team Type 1 and Life With Diabetes

Friends For Life is not just for children with diabetes. It isn’t just for adults with diabetes. It is also for parents, grandparents, siblings, significant others, and friends of people with diabetes. Friends For Life is for those who need hope, who need help, and who need reassurance that anything is possible for people with diabetes, whether they themselves have diabetes or not.

Phil Southerland, founder of Team Type 1, lives to prove that anything is possible with diabetes. I’ve seen the presentation of the story of Team Type 1 several times, but Friends For Life was the first time that I’ve seen it directed to parents and caregivers of children with diabetes.

Phil started by introducing himself, and sharing the story of how he and his mom dealt with the reality of the diagnosis of Type 1 diabetes when he was a small child. I can relate to Phil’s story, as I was diagnosed at about the same time he was. I was two years old when I was diagnosed, and though doctors tried to fill my parents with hope that a cure was on the way, the reality of the diagnosis at that time, and for me at such a young age, was not as optimistic as it is today.

But Phil and I both made it, and we got to experience the Team Type 1 session at Friends For Life 2012 with one of us on stage, and the other (me) out in the audience observing how parents with the same diagnosis as our parents received about us were trying to figure everything out.

I was so happy to see the room full of orange bracelets (worn by those without diabetes). Friends For Life is ultimately a Children With Diabetes conference, and with the exception of an Adult T1 Track, it is geared primarily to children and their caregivers. For this session, I was actually the one in the room that wasn’t where I was supposed to be. Not really a surprise, as I’m rarely where I’m supposed to be, but still, it thrilled me to see so many parents who were interested in learning that their kids can do ANYTHING with diabetes.

Several of the parents in the room had specific questions for Phil about how to manage their child’s diabetes in various situations, such as while swimming, playing soccer, and other sporty situations. Something I see often with parents, especially those parents whose child is recently diagnosed, is that they want black and white, straightforward, no argument answers about how to deal with some aspect of their child’s diabetes. They don’t want it to be as “bad” as it is.

The truth of the matter is that diabetes is not black & white. It is gray, purple, green, yellow, and every other color of the rainbow. Although it has its tough days, living with diabetes is one of the best things that ever happened to me. If you ask Phil, he will tell you the same. With diabetes, you have to really know your body, pay attention to it, and as a result many people with diabetes (PWDs) are as healthy or healthier than a lot of people without diabetes. I find a lot of strength in that.

The specifics of diabetes varies for every single person. Honeymoon periods (the period of time for some recently diagnosed Type 1 diabetics where their body is still producing small amounts of insulin, which typically decreases as time goes by) last for weeks, or months. Low blood sugar symptoms show up at a BG (blood glucose level) of 110 mg/dl or 45 mg/dl, and sometimes not at all. Every single person with diabetes varies.

Phil’s best advice to the parents, and something I agree with him 100% on, is to let children become the CEO of their own body. Keep focused, but learn and let children learn from their diabetes successes and mistakes. Blame does not breed learning.

If your child has a low blood sugar, it’s not your fault, and it’s not their fault. If your child has a high blood sugar, it’s not your fault either, nor is it their fault. The same applies if you have Type 1 diabetes yourself. That is diabetes, and over three decades of living well with diabetes has taught me that it is critical to remove the emotion from diabetes numbers, such as blood sugar levels and A1C values.

It’s just data, and it isn’t telling you that you are doing it right or doing it wrong. Only a human can assign emotion to math. A blood glucose meter cannot do that. Take diabetes data with the same face value as a road sign or a traffic light: It is a cue that some sort of action needs to take place, whether that action is to make an adjustment, stop, proceed with caution, or keep going and you’re doing great!

The next time your child comes home from school, resist the urge to immediately ask them what their last BG reading was, or how they are feeling, if they need a snack, or how many carbs did they eat for lunch. Instead, ask them to tell you about the most exciting thing to happen to them that day. You may be surprised to learn that diabetes is not the most exciting part of their world, so don’t make it the most exciting part of your world either (unless you’re at Friends For Life).

Life comes first.

Level Up

A recurring theme in my diabetes world is running low. I can function normally with a blood sugar down to the mid-40’s most of the time, and not even realize it. That’s called blood sugar unawareness. It’s also dangerous.

Low blood sugars have a way of sneaking up on me. I finally figure out something is wrong when all of a sudden I’m unable to focus, or my mouth is running 90mph but the words aren’t making sense anymore, or I’m trying to communicate but can’t get any words out at all, or my mood swings from normal to highly agitated and upset for no reason, or I’ve sweat through my clothes and am a shaky mess.

Most days I wear a Continuous Glucose Monitor (CGM), which alarms when my BG drops too low. Most days, it even catches it in time. However, there are days that I go without my CGM, which is dangerous, stupid, and quite honestly, a total waste of money. Those CGM sensors are not cheap…at all!

When I was a kid, I was stupid and I guess I thought I was invincible, because I would run off to play or with friends and never carry anything to treat a low with me. It’s a wonder that I survived, as active as I am and as busy as I’ve always been, from childhood to adult. I don’t even want to know what my A1C must have been when I was flying by the seat of my pants like that.

After 31 years of Type 1 diabetes, and a lot of lessons learned, I don’t go anywhere without something to treat a low. I’ve got glucose tabs on my car keys. I’ve got juice boxes in my refrigerator. I have a stash of low blood sugar remedies in my nightstand drawer. In fact, I’ve probably got something to treat a low in every room of my house, every bag I carry, in my car, and in every drawer of my desk at work.

There’s a new product that I carry with me everywhere now. It comes in a pouch, and it fits in my pocket, in my BG kit case, in the easy access velcro pocket on the outside of my messenger bag, in my gym bag, in the back of my cycling jersey, in my car, and I’ve even managed to stuff one in my shaving kit for when I’m traveling.

I’m talking about Level. Level is a pouch of glucose gel, 15 grams of carbohydrates in each, that are perfect for me to treat a low blood sugar with…anywhere. I can swallow it easy when my mouth won’t cooperate, it opens easy so that I can rip it open with my teeth if necessary when my hands are being clumsy, and it’s delicious, unlike most other glucose products I’ve choked down in a moment of low blood sugar desperation. Level is available in four flavors: Mandarin Orange, Caramel, Strawberry-Banana, and Vanilla.

One thing that most people with diabetes (PWD’s) who run low can appreciate is that, when we are low, it’s a lot more fun to treat that low blood sugar with something delicious than it is to force feed ourselves with something that nobody would eat on a normal day. That is one thing I like about Level pouches. Treating a low with something that tastes like mandarin-orange, strawberry-banana, caramel or vanilla really isn’t so bad.

My advice: Try it. It’s worth a shot to not have to eat a handful of glucose tabs, at least for one low. Tell the folks at Level that you read about it on Diabetically Speaking, and they’ll throw in a bonus! Just enter diabeticallyspeaking at checkout on their web site, LevelFoods.com, and get 20% off any purchase of $25 or more. Pretty sweet! (Pun kind of intended.)

Now, this is the disclaimer part. I am in cahoots with the company that makes Level. They really didn’t have to push me very hard to get me to say good things about their product. I really wanted to share with those of you that read Diabetically Speaking because it works for me, it doesn’t taste like I’m eating chalk, and I can actually get into it when I’m having a shaky, clumsy, can’t quite get my body to do what it’s supposed to kind of low. It’s pretty much a life saver in Martin’s diabetes world, but in the effort of honesty and integrity, I’m divulging that not only am I a Level fan, I’m also a customer. So there. Remember, enter diabeticallyspeaking at checkout at LevelFoods.com, and get 20% off orders of $25 or more.

Make It So…Wait, Low?

We’re right smack dab in the middle of Diabetes Blog Week, and as much as I would love to be able to post every day, my schedule refuses to allow it. Today’s topic, about some diabetes thing that you or your loved one does spectacularly, captured my attention though, and reminded me of a story that happened just this past weekend.

On Friday, my 31st Diaversary, A-Flizzle and I ventured over to the Monticello Opera House, where I dawned one of these…

…and proceeded to serenade the sold out crowd.

Or maybe I just went there for the Star Trek Murder Mystery Dinner Theatre.

In any case, me and Number One (A-Flizzle) were there and made it so. This was my first murder mystery dinner, so I really had no clue what to expect. In diabetes terms, I didn’t pre-bolus, because I didn’t know exactly when we would get food, or even what the food was going to be. The menu said something about sliced Tribble, with a side of pok tar, and a big stein of Romulan ale. Yeah, go ahead…try looking THAT up in Go Meals! (Which is awesome, by the way, if you ever need an app to look up nutritional info. And no, they didn’t pay me or give me anything to say that. But if they wanted to…*cough, cough*)

Do you think the computer in Star Trek would tell you the nutritional info, or would it just beep and buzz at you like our insulin pumps and Continuous Glucose Monitors (CGM’s) do now? Inquiring Klingons want to know.

Back to the story…so we were sitting there in Act 1, and the galactic detective was setting the scene, something about how awful of a detective he was, or maybe he was getting ready to retire, or perhaps he had chased an alien rabbit down a black hole and had been warped to the other side of space and landed on some distant starship. Honestly, I have no clue, because while we were making it so, diabetes and the full-throttle day was making me low.

Near the end of Act 1, I was trying my hardest to focus and keep up with the story, but I was checked out. My attention was somewhere between Jupiter and Pluto. All I could think was, “I’m low…and is that person really wearing a Darth Vader mask under a hood and pretending to be in Star Trek?”

The spectacular of the story is that A-Flizzle noticed. A regular Coke and a couple of glucose tabs later, I was back in space, instead of spaced out. I caught up with the mystery, we enjoyed dinner, had blueberry cobbler for dessert that was to die for, and by the end I had even figured out whodunit.

The biggest mystery though is how A-Flizzle figured out that I was low in a crowded room with attention being diverted in the opposite direction of me. Somehow, she has figured out my low blood sugar tells, those hijinks that give away that something is wrong, sometimes even before my brain is capable of comprehending it…and that’s a pretty spectacular diabetes trick.

Just Another Day

This past weekend was a good weekend. No deadlines except that one that made a nice whooshing noise as it went by, nowhere to be, just an opportunity to enjoy things at a leisurely pace.

Saturday, A-Flizzle and I got a wild hair and decided it would be fun to go on a six mile urban hike, which is a more adventurous way out saying that we walked through a few neighborhoods and down a few sidewalks. It’s kind of amazing the things you notice when you are on foot that you never see from driving around in a car. We found a house with a dinosaur in the front yard, several Florida rooms off the sides of houses with beds in them that we were hoping to catch someone dozing in, a new sports bar and restaurant being built, and we learned that the pedestrian crosswalks have absolutely no rhyme or reason for when they decide to let you cross the street.

Throughout the day, I thought I had done a really good job of counting carbs, factoring in activity, and doing a good job of keeping tabs on things so that I didn’t go low from the activity or high from any of the delicious things that I ate, like the banana and Nutella crepe that I may or may not have had for lunch at about mile 4.5 of our urban hike. And by the way, this is my blog post, and I call it Nutella, not Noo-tella…because there’s a freakin’ “nut” in it. YPONMV. (Your pronunciation of Nutella may vary.)

After a day of near perfect BG’s, around bedtime on Saturday night I realized that I wasn’t feeling too well, so I did a quick check to see where things were. 342. I was pissed. Are you for real?! I counted everything! I know I got the math right, or at least in the ballpark enough to not merit a stupid 342 BG. What the #$@#%#$?!!!!

After I got done pitching a fit, I tried to think what might have jacked my BG up so high. Surprisingly, I don’t think it was the banana and Nutella crepe. There was nutritional info, and I’m pretty sure I was in the ballpark on that one. Since it was sunny and over 90 degrees outside when we were urban hiking all over town, I settled on the idea that the insulin in the tube of my pump probably got a little too warm during the activity and had lost its effectiveness. Insulin is supposed to be kept cool or at room temperature, and let’s face it, late Spring and Summer in Florida is far from being room temperature by any stretch of the definition. Something you have to be aware of if you’re going to sport an insulin pump is that, every once in awhile, heat happens.

I dosed down the 342 BG with a shot of insulin via the old faithful syringe, and then switched out the insulin in my pump. Either I overestimated how much I needed to pull that 342 BG back down to normal, or the activity of the day finally caught up with me, because I woke up around 3:00am at BG 35. After a juice box and a couple spoonfuls of peanut butter (which I may or may not have shared with Hopper dog), I woke up in the morning with a perfect BG of 88.

Diabetes is a total game of numbers. In order to stay alive we have to count everything. And guess. A lot.

We have to know how many carbohydrates are in everything that we put in our mouth, what our blood sugar (BG) level is at the time, and guesstimate how much activity (or lack thereof) is going to affect our metabolism and BG level. Then, on top of that, there are ever present questions about how accurate our BG meters are, we never really know for sure how effective the insulin that we’re injecting is going to be (especially after it has been in an insulin pump for a few days), and our bodies sometimes process that magical life elixir differently than yesterday, when we had the same food, the same activity, and the same BG levels.

My endo says that “doing the same thing over and over again and expecting different results is insanity…unless you have diabetes.” In Martin World, it’s just another day.

Hangry

It’s hard to describe, and even differentiate sometimes, the difference between having a low blood sugar and just running on pure empty from not eating all day.

All week, since Daylight Savings Time kicked in, I have been trying to outrun the clock and get to work on time. I love DST, don’t get me wrong, but it’s really hard to get up in the morning when it’s still dark outside.

Okay, who am I kidding? It’s hard for me to get up in the morning whether it’s dark outside or not.

Yesterday morning was no different. Running late, I brushed my teeth, grabbed my work gear, made certain that I wasn’t walking out of the house with flip flops and pajama pants on, and hit the road.

I realized when I grabbed my messenger bag out of my car that it was lighter than usual. Turns out I had left my lunch (leftover white bean chicken chili from dinner the night before) at home. It happens, right?

This wouldn’t normally be a problem, but I have a habit (a good habit, if you’re viewing things from my employer’s perspective) of getting to work and throwing myself into things and not stopping. I’m notorious for working through lunch, skipping breaks, and looking at the clock to surprisingly discover that it’s mid-afternoon and I haven’t seen the outside of my office all day. The only thing that I will consistently break for is coffee.

After my second cup of coffee…okay, third cup…maybe fourth cup…I realized that I was pretty much plowing through my day of meetings, emails, phone calls, and one-armed library dragon training. Once I was done, and those dragons were tamed well enough to stamp due dates in library books like they were born with that one lonely arm to do just that instead of burn villages and terrorize innocent monks (Trogdor!!!), I called it a day and headed home.

Now, I knew I had been moderately low all day. I’m back to wearing my Continuous Glucose Monitor (CGM) again, after a slight hiatus from all the beeping and bonking and wee-ooo-wee-ooo-wee-ooo alarms waking me up in the middle of the night, and it had warned me off and on all day that I was hovering around 75 mg/dl. Still, I didn’t stop to treat it or deal with it. I just kept working.

When I got home, A-Flizzle and our pal EriCAH were there, so I started preparing dinner. Yay, food!

I kept noticing that I was agitated with everything, but I didn’t have the sense to question why. Cutting the chicken and vegetables, I was seething. Trying to figure out how to make the chicken stock thicker, I was fuming. When I realized that we only had a single serving of rice, I was mulling over what it would be like to throw the refrigerator off a cliff. It was so ridiculous that I was getting on my own nerves. I must have been driving A-Flizzle and EriCAH crazy.

That was when I realized I had reached my limit. I was low. I was hungry. I was angry. I was HANGRY! And I was making dinner and the food was too raw to eat immediately. Oh, the agony! The horribleness! The tragedy!

Eventually dinner finished, and we all got to experience my chicken thai curry science project of a meal, but it was a great example of how normal for some people isn’t normal for those of us with diabetes. There are times that we absolutely MUST stop and eat. Going all day long without eating is dangerous, and in hindsight, I’m probably lucky that I didn’t have a sneaky low that left me sitting in my office in a pile of sweaty, shaky, confused nonsense with a co-worker telling me, “Drink your juice Shelby!”

I’ll probably do it again though. Because I’m stubborn like that.

	Rick Phillips on I Lied
	Tina on A Bunch of Sensitive Pric…
	Heather Gabel on Diabetes as a Disability
	Martin on Diabetes as a Disability
	Heather Gabel on Diabetes as a Disability