CGM

A Bunch of Sensitive Pricks

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.

We Interrupt This Irregularly Scheduled Diabetes

I’ve been running high lately, and I don’t know why.

BG 220

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.

Hurt Hands

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.

Martin and Amanda on Bicycles

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.

–MW

Assuming Positive Intent

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.

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.

High Times in Jacksonville

For my birthday, A-Flizzle surprised me with a trip to Jacksonville for a weekend of good food, good times, and great friends. It was such a surprise! I never saw it coming. I was all, “Hey, I’m going to work” and she was like, “No, we’re going on a weekend getaway” and I was like, “Oh wow, I’m so surprised! This is so cool!”

Okay, who are we kidding? I hate surprises, and she knows it. That’s why she’s a keeper. To prevent me from freaking out, A-Flizzle made this awesome timeline of what was going on and where we needed to be. Actually, calling it a timeline doesn’t really do it justice…it was a FUNline. Look at this picture while I do the pencil sharpener…

Friday started with a beermaster’s tour of the Budweiser brewery in Jacksonville. Upon arrival, I struck up a conversation with the tour guide who noticed my insulin pump. She couldn’t quite grasp how in the world I could possibly have Type 1 diabetes and drink a beer, at the same time. It’s not an exact science, but I explained to her the basic idea of factoring in blood sugar levels and counting carbs and dosing enough insulin to cover the difference, just like anything else we people with diabetes (PWD’s) eat or drink. Yes, I know there’s some long division and a square root of Pi and other fuzzy math that goes into calculating carbs and insulin when drinking alcohol for some PWD’s, but your diabetes may vary (YDMV). Suffice it to say, it was nice to meet someone in the beer brewing industry who was legitimately interested in how everyone might be able to enjoy what they put so much effort into making.

The tour was fascinating, and getting to sample beer directly from the ice cold tanks was delightful. There is no way to get a fresher beer than that. One lady on the tour, who didn’t even like beer, even became a convert. I’ve got a newfound respect for the Budweiser brand of beers now, and the care that goes into making each and every one. It’s a process of Willy Wonka proportions, and I’d highly recommend the tour if you every have the opportunity. Also, the gift shop is a great place after you’ve had a couple. Just saying. (I left with a Landshark beach umbrella and a hoodie with a built-in beer koozie on the front. So…yeah. In my defense, I did pick those things out BEFORE the tour.)

I also found my dream job in the Budweiser brewery…

Afterwards, we met up with Jacquie and the family for dinner: Mediterranean food, for the win! Nothing chases an afternoon at the brewery like chicken shwarma. Shwarma…mmm. Just sounds delicious, doesn’t it?

The next morning, my pal Bob and I were supposed to get up and go for a bike ride. However, it was cold-ish, and the temperature was not appealing to my sense of get out of the warm bed and go pedal at all. After texting back and forth for a bit about it, we decided to do what any normal person who doesn’t feel like braving the cool air to go on a bike ride does on a Saturday morning.

We went and ate bacon.

After that, A-Flizzle and I made our way toward the spa, where she had us lined up for a facial and a 1-hour deep tissue massage, respectively. Now, I’ve gotten a massage before, and my pump was never a big deal for the masseuse. In fact, every massage that I’ve ever gotten, I was able to keep my pump on and just slide it to the side and the masseuse was able to work around the tubing and the infusion set. No big deal, right?

Except, this masseuse was different. Although she was plenty nice enough, and she did a spectacular job of getting some of the knots out of my back and neck and shoulders, she was really weirded out by the idea of having to work around my continuous glucose monitor (CGM) sensor and insulin pump and infusion set. Because I needed that ding dang massage more than I needed diabetes at that moment, I decided to dose a couple of extra units for the hour, and then I took off my CGM sensor and my insulin pump so that I could get some relief. Stop me if you’ve heard this one before.

In hindsight, I should have just let the masseuse be uncomfortable. Once the hour was up, I was a blob of mostly relaxation. A-Flizzle and I took a leisurely pace back to our room, at which time I stupidly decided a birthday cupcake was in order. A cupcake? Really?! Dumbass. Then I proceeded to get a shower, which was delightful, and full of hot water, and a window that I could look out of while scrubbing off eucalyptus oil. I’m like a cat. I can’t resist a good window to look out of. Hours of entertainment. Fortunately, the hot water didn’t last.

Keep in mind, I failed to put my insulin pump back on through this entire episode of Birthday for Dummies with Diabetes.

By the time I got done taking my sweet time with everything, my blood sugar was through the roof. I don’t even remember what it was by the time I put a new infusion set in and reconnected my insulin pump. Probably somewhere around 1,000,000 and rising. I felt like crap. Way to ruin your own birthday there, Wood. Brilliant.

I dosed the snot out of the high in hopes that I could get it at least dropping by the time we had dinner at one of my favorite restaurants in the whole wide world, 13 Gypsies. I was moderately successful, but really had to focus dinner on the lower carb items and lots of water to try and offset the effects of the afternoon.

See those eyes? That’s not glassy eyed from birthday beers. That’s worn out from fighting a high blood sugar all afternoon. I’d have preferred the former.

I guess the moral of this story is to never disconnect your insulin pump and remove the inset unless you have another one handy for immediately after whatever necessitated your getting naked. Because I am the last person in the world to vote against being naked. Also, maybe tell the spa and masseuse that you have type 1 diabetes and use an insulin pump so that they don’t freak the eff out when they see that you’re bionic.

Maybe also do this in an Austin Powers voice, just for style points. Yeah baby!

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

Bullets: Rat-a-tat Tat

I’ve been traveling a lot lately. And working. And traveling some more. If my counting is correct, this past weekend was my 8th trip somewhere out of town in the last two months, after weeks of prepping for said travel, and I still have one more trip to go.

I’ve forgotten what weekends at home are, but if those mythical creatures still exist, I’m certainly looking forward to one someday soon. I’ve got a lot of catching up to do, and so much that I want to share with all of you that still read my blog and haven’t given up on me while I’ve been M.I.A. the past few months.

Overall, the past several months have been a success, made up of both work and diabetes, and including a lot of reading, thinking, meetings, planning, traveling, juggling, tightrope walking, backward and forward somersaults, and as much fun as there has been time for in the three ring circus that is my life these days. Here are just a few highlights:

I took a trip to Seattle, Washington for the Medical Library Association conference. I had never been that far west or north before, and it was a mind-boggling and delightful experience. Jet lag sucks though.
I attended the inaugural Students With Diabetes National Conference in May, and it was one of the most incredible three days with diabetes that I’ve had in my entire life. Ever. I’m still processing my thoughts on it, but what is being done with Students With Diabetes and Bringing Science Home is nothing less than life altering.
After working every day (and night) since the end of February to plan a statewide meeting of medical librarians, I was elected President of the Florida Health Sciences Library Association. I’m extremely proud of and excited to lead this group to some grand things for medical libraries in Florida over the next year.
I’ve finally decided that I’m all in for D-Ink. I just have to find someone who has the skill to draw what I want. Will share my thoughts on that process, which may appeal to some of you who are also considering D-Ink.
New diabetes technology is out and about, and I’m drooling over it. However, with every new invention to improve the lives of people with diabetes, there comes a list of challenges.
Traveling and eating out so much has left me still struggling with my weight…again. It’s a recurring theme, really. I wanted to be lean by Friends For Life this year, but alas, that’s next week, and I don’t see myself losing the equivalent of a toddler between now and then. I’m exploring some options of what to do about it, and trying to figure out how I can get into a routine that isn’t so detrimental to my bottom line, so to speak.
Through everything, I’m still working to stay on top of my world with diabetes. 60% of the time it works every time. Wearing my Continuous Glucose Monitor (CGM) on a constant basis is still probably my biggest diabetes challenge, for a host of different reasons.
Also, I’ve spent some time recently shepherding someone near and dear to me who is newly diagnosed with Type 1 diabetes. It has left me with a lot of thoughts about how we, both as patients and parents of children with diabetes, react to change and the news that our transmission has decided that it wants to be a “stick shift” rather than an “automatic.”

More to come on all of this, but I’m just excited to get back to writing and sharing and communicating with everyone again.

Here’s a picture of me and Sara at the Students With Diabetes National Conference. See also: Poster children for Type 1 diabetes. (You read it here 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.

Why You So Stubborn, Diabetes?

I think of myself as a typically optimistic person, especially when it comes to my diabetes, because really my life with diabetes is better when I’m able to cast it in a positive light. Even so, that doesn’t mean that I don’t spend a few days in the trough of a wave every once in awhile.

Today was one of those days. I didn’t sleep much over the weekend, so this morning I got up early and fed the dogs and then decided I would try to sleep a little bit longer, considering it was Sunday and all and I didn’t have to go to work or anything. About the time I got comfortable, some masochist with a lawnmower decided that 8:00am was a fine time to mow the grass next door. Seriously, how do you get up so early on a Sunday and think, “I’ll go mow the grass this morning.” Read the paper and have a cup of coffee for Pete’s sake. Have a whole pot if it tickles you. Just don’t go outside and crank up the mower and wake up the neighborhood! </rant>

I like to make a big breakfast at least one morning on the weekend. I’m doing good to get dressed and get to work on the weekdays, so Sunday mornings are my time to pause and enjoy the thrills of a pot (or two) of coffee, eggs, sausage or bacon, and Meet the Press with A-Flizzle. If you ordered that meal at Denny’s, it would be a Grand Slam Nerdy, and could you leave a carafe of coffee on the table please?

I found a little bit of Bisquick left in the fridge, which is weird because most people put that in the pantry, but I decided to use it up and make a couple of pancakes. I limited myself to just one pancake, the one that came out looking like it had been put in somebody’s pocket instead of in the skillet, because I didn’t want my blood sugar to go through the roof or anything crazy. And it didn’t. It just hovered around the stinkin’ penthouse suite all day long, making me real frustrated because it wouldn’t come back down to the lobby where all the normal BG’s hang out.

That was the only starch that I had on the day, and I hovered around 200 mg/dl all day long. Being used to running a BG of around 100 lately, I felt that 200 in full effect. I even resorted to rage bolusing, just throwing a max amount of insulin at it to try and get it to budge. We went to see Hunger Games with some friends, and I barely touched the popcorn. Then we went to dinner afterward, and I couldn’t even eat because I was so nauseous and thirsty from the stubborn high BG. Finally, after I got home and gave up, I started to sink back down to normal again.

I ended up having to take over 100 units of insulin today to combat diabetes. That really, REALLY frustrates me, considering how a normal day for me (with carbs) is closer to 60 or 70. In hindsight, I shouldn’t have eaten that pancake, but there was no way of knowing that it would have been so stubborn all day long. The beauty of the conundrum is that it might not have even been the pancake. It could have been that my insulin lost its potency, or that I’m fighting off a virus of some kind, or that I was wearing green today instead of blue and my diabetes was offended. In other words, who knows?

Some of you may be reading this and thinking, “Wow, he’s got the diabetes real bad.” You may be thinking, “He really isn’t taking care of himself having to dose that much to get his blood sugars to cooperate.” You might even be thinking, “I would have been pissed too if that guy had woken me up with that damn lawnmower!” Or you might just be thinking, “Yup, been there, done that.” I’m convinced that some days diabetes has a mind of its own and does whatever it damn well pleases, regardless of what we try to do to “control” it.

Fighting back the tears, I was telling A-Flizzle about how frustrated it makes me when I feel like I have no control over what my body and diabetes has decided it wants to do. I hate feeling like I’m just strapped in and along for the ride, wherever it may take me. That is why I have the CGM, why I check my blood sugar on average 6-8 times a day, and why I try and count everything that goes in my mouth so that when I do make a mistake, hopefully it isn’t a complete disaster.

This situation is a good reminder to myself that we can do seemingly everything right in our lives with diabetes, from correct carb counting, insulin dosing, BG checking, and everything else, and yet we can still have those days where all of the pieces just refuse to fit together.

Tomorrow is a new day, with a new inset, and a fresh reservoir of insulin in my pump. So bring it beetus! I’ll be your Huckleberry.

	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