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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.)

Red Powder Explosion

(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.

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…

JeffreyBrewer_FBPost_07-20-2014

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.

JDRF_AmyFord_Transition_07-21-2014

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…

Dayle_DiabetesOrgs_07-21-2014

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.

Elmira Hug

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.

YouAreHanSolo

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.)

Han Shot First

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.

Numbers Numbers Math Math Math

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.
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.

Dealing with Rx Coverage Changes

Open Enrollment is that magical time of year when you have a brief window of opportunity to make decisions about your retirement, savings, life insurance, health insurance, and whether or not you want to join the local granola grocery co-operative via payroll deduction. Okay, so maybe some parts of Open Enrollment are more important than others.

At my work, we have a health and wellness fair during Open Enrollment where all employees can show up and visit vendors, talk to various company representatives, have their blood pressure checked, get flu shots, and participate in testicular cancer screenings. It’s usually a complete madhouse, with way too many people, so I tend to avoid it if at all possible. This year, however, I went so that I could get some information on my health insurance options, and make the rounds taking advantage of free information and basic health services.

Wait…what do you mean nobody was supposed to be performing testicular cancer screenings? Dangit! Fooled again!

At the end of the week, I was clicking around doing research and exploring my options for 2014, and I stumbled across some panicked discussions of changes to prescription drug coverage. As I lurked, and got caught up on what was going on, I realized that the prescription drug insurance company that folks were talking about was the same as the one that I use to get those things that I can’t live without, like insulin and BG strips.

Don't Panic

Word has been getting around that Express Scripts is changing their coverage, or preferred coverage, or well, really it just depends on how you look at it and what your contract with Express Scripts says. But don’t take my word for it. The CMO of Express Scripts lays it out pretty clearly: It’s all about money. Shocker, right? (That’s sarcasm.)

For me and my diabetes, my biggest concern had to do with the coverage of Novolog shifting over to a questionable category in the Express Scripts 2014 Forumlary (PDF) called “Excluded Medications.” What does that even mean? Does it mean that Novolog is no longer covered at all? Because that is what I think when I see the word “excluded.”

Well, despite being on a list of “Excluded Medications,” I was able to confirm with my HR representatives and pharmaceutical reps that “excluded” really means that those drugs and products are no longer “preferred” medications, but are still covered as non-preferred medications, which means they fall under a higher copay, as well as possibly requiring the patient to pay the difference between the non-preferred brand name medication and the preferred alternative. As an alternative to Novolog and Apidra, Express Scripts is suggesting Humalog. When I talked to a physician friend of mine and he mentioned a recent visit by a Lilly rep (who manufactures Humalog) to his office, the word he used to describe the Lilly rep’s reaction to the Express Scripts formulary changes was “jubilation.”

But don’t worry folks, Viagra is still covered and preferred.

The shared reasoning behind so many drugs moving over to the non-preferred list at Express Scripts is because they do not believe that many newer, more expensive, more recently researched medications are as effective as their cheaper counterparts. They feel that patients already have enough options. Besides, patients are all the same, right? I mean, if you have diabetes, and I have diabetes, then we’re basically twins. Right? No.

I know what I need for my diabetes. My immediate healthcare team knows what I need for my diabetes. My A1C says that what I’m doing is working pretty well. This is MY diabetes. There are many sort of like it, but this one is MINE. Pharmacies and prescription drug insurance companies focus on how much I cost, and how much money they stand to make or lose from me, which is the biggest decider in the level of service that they provide. That is business, and as someone with a chronic condition who needs prescriptions on an ongoing basis, I’m not worth as much to them as a person who pays a monthly premium but never uses prescription benefits. To hedge their losses, they move prescriptions that are actually working better over to a non-preferred status so that they don’t have to lose as much money filling orders that are more expensive. To be honest, I’d probably do the same if it were my finances. The difference is that my personal financial savings decisions don’t usually require other people to make decisions about how they are going to live and survive. < /rant >

In some situations, where your physician feels that you need the brand name medication that is on the non-preferred list, there is a solution that may help. I was advised by my benefits group of the following:

If you request a preferred brand-name drug when a generic is available, you must pay the difference between the generic cost and the preferred brand-name cost, plus the appropriate copayment or coinsurance. If your physician writes on the prescription that the preferred brand-name drug is medically necessary or“dispense as written” and the reason, you pay only the appropriate copayment or coinsurance.

Maybe none of this information is helpful to you. Maybe you are covered at 100% and don’t have to worry about copays, preferred and non-preferred medications, or notes from your doctors that include the words “medically necessary.” Or maybe you’re wondering how you’re going to be able to afford insulin in 2014, along with BG strips, pump supplies, glucagon, doctor appointments, and other diabetes randomness. Whatever the case, DON’T PANIC. In most cases, you still have time to get an appointment with your healthcare team to talk about your needs and build a plan for what is next. With insurance, prescriptions, and even diabetes advancements, the only thing that is constant is change. Diabetes is a different beast every day, and we adapt to it constantly. This too, we will adapt to.

Diabetes In Boston

This week I’m at the Leadership Institute for Academic Librarians (LIAL) at the Harvard Graduate School of Education in Boston, Massachusetts. This is the 15th year of the LIAL, and the Class of 2013 is made up of roughly 100 librarians from all over the world. I can say “world” because the group is made up predominantly of librarians from the United States, but also Canada, China, Saudi Arabia, South Africa, and Trinidad and Tobago.

Welcome to Boston

The first thing I’m not supposed to do is tweet about LIAL. Or Facebook about LIAL. Or probably write this blog post about LIAL. So I won’t share all of the intimate specifics of LIAL, but I feel that I have an obligation to share some of what I am experiencing without necessarily divulging the deep, dark, sordid secrets of my fellow librarians.

Because diabetes is a part of every single thing that I do, I don’t feel shy about sharing some of the other sides of my life every once in awhile. How am I ever going to be able to sell that line about “I am more than just my diabetes” when I’m not willing to share more than just my diabetes? Besides, there have been some diabetes moments, so it’s not all librarian mumbo jumbo. Which is lucky for you, because that means you get to learn a little bit about Martin Librarian as well as the usual rants and raves about my living with diabetes. Consider it as entertaining as when someone farts in church while the preacher is taking a breath mid-hellfire and brimstone. I will be that fart of fresh air for you.

Like yesterday, when I was getting on my plane in Atlanta, a nice couple in the front row reached out to me and pointed out my Medtronic insulin pump that I had clipped to the outside of my jeans pocket. Turns out they work for Medtronic (or did, I’m not sure…boarding the plane was a little chaotic). There wasn’t much time for chatting, but they were very happy to see someone wearing a device that they are so proud to have been a part of developing. That made me happy. Not so much because they work for Medtronic, but just that MY diabetes made someone else’s day. Because, let’s face it, sometimes it’s a real dump in the pants.

(And that’s the 2nd fart joke I’ve made in one blog post. I should be ashamed of myself. I’m not. You’re welcome.)

Since I arrived in Boston, I’ve pretty much been going nonstop. So far I’m managed to break one iPhone case, one set of earbuds, discover that I didn’t bring enough socks, or any workout clothes, I didn’t complete near enough reading to feel prepared for class, and that the minibar is no substitute for a fridge in a hotel room. On the positive side, I won an argument versus a cab driver with a stereotypical Boston bad attitude, found an honor system book sale on the street, and saw socks in a store window tonight that have stripes made out of eff words on them. I’m sorry if you’re easily offended, but I WILL be going back to get me a pair tomorrow when they are open. You don’t let that kind of opportunity pass you by.

Several times so far this trip I’ve been asked about diabetes, which is awesome. Probably because I have it tattooed all over me. Yesterday, a nice woman that I was sitting next to on the plane from Atlanta to Boston asked me about the differences between multiple daily injections (MDI) versus using an insulin pump for people with Type 1 diabetes. Today, after getting off of the phone helping out a fellow T1D with a diabetes challenge, a librarian colleague and I had a conversation about Students With Diabetes and my passion for helping people with diabetes, and especially my unique perspective as a medical librarian with Type 1 diabetes. I absolutely love it when my diabetes world intersects with the real world in a positive way, and that I’m making progress integrating it with Martin Librarian world.

I also sat next to a nice librarian lady today (named Ripple, which may be the coolest name ever) who had a Mickey watch, same as mine. What are the odds? She’s the first person I’ve ever met in the wild with a Mickey watch like mine, and who isn’t six years old.

Mickey watches at LIAL 2013

I’m learning a lot this week, and will share more as I can. There is a TV inside the mirror in my bathroom, so I’m going to go watch SportsCenter now.

TV in mirror

(3rd fart joke. You didn’t even see that one coming!)

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!

No Brain

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.

Keep Calm And BG On

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…

Birthday Funline 2013

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.

Birthay 2013 - Beer from the Keg

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.)

Birthday 2013 - Amanda and Martin and Beer Kegs

I also found my dream job in the Budweiser brewery…

Birthday 2013 - Dream Job

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.

Birthday 2013 - Martin and Amanda

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!

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.

Friendly Neighborhood Tyrannosaurus Rex

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.

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