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.
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.
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.
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.
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.
(3rd fart joke. You didn’t even see that one coming!)
Marker. Brand. Name. Characterization. Classification. Hallmark. Identification. Number. Stamp. Sticker. Tag. Ticket. Trademark. Type. What do these things have in common?
They are all labels. Each and every one of us makes our way in a world that is riddled by an incalculable number of labels. Everything that we interact with is dictated by some form of label.
We go to the grocery store and we make decisions about what to buy based on a number of different labels. We look at brand names, price, nutritional info, ingredients, and even if the product has an appealing design element to its packaging, and we make a decision about whether or not we want to purchase and consume it or not. Let’s face it. We would probably buy dog food and eat it if the labels passed our various conscious and subconscious criteria for consumption. I’ve seen some cans of dog food where the photo looks just as appealing as Campbell’s Chunky Soup. But don’t take my word for it…
Seriously?! Prime cuts in gravy! And it even has an easy open top! I’m sold.
I hear my fellow people with diabetes talk about labels quite often too. Type 1. Type 2. Juvenile. Adult-onset. LADA. Overweight. Underweight. High. Low. Insulin. Pills. Pump. Pens. Pricks. Gels. Tablets. Injections. CGM. Sick. Well. Brittle. Compliant. Non-compliant. Unaware. DKA. BG. A1C.
So let me get to the beans of it all. I don’t understand the anger that some people have with all of these labels. We live with them every single day, and we make decisions based on our understanding of labels on a near constant basis, but as soon as someone attempts to label us, makes a mistake, tries to empathize, or even tries to give advice (even if it is misguided), we get our underwear completely in a wad and pitch a fit. Ever heard any of these?
“How dare that person give me advice about MY diabetes? Telling me what I should do. They don’t know me! They can’t imagine what I have to deal with everyday!”
“How dare that person compare me to those fat, lazy people with diabetes. They chose to be that way! I didn’t choose this! This chose me!”
“Yes, I take insulin. NO! I don’t have the BAD kind of diabetes!”
“How sick am I? HOW SICK AM I?!”
There are all these things that people say that we just get so bent out of shape about. Newsflash: People are stupid. I mean, we’re smart. Sometimes. But we can be really dumb. Every single one of us. We often have no idea when we should just keep our mouths shut because we don’t have enough background information to know any better. So we say something. Sometimes with the very best intentions. And we make mistakes. And not one of us is immune to it.
Fact #1: Nobody knows your diabetes better than you. Nobody. Not even your doctor.
Fact #2: That’s okay.
We want so much to not be labeled. We don’t want to be judged. We don’t want to be considered sick. We work so hard on our diabetes, our weight, our outfit, our hair, our makeup, our jobs, our school, our families, and whatever else we define ourselves by that we get really upset when someone else doesn’t understand or appreciate what we go through and how hard we work each and every day. We get even more upset when they get it wrong.
But if you think about it, can you really blame them? They don’t know your situation anymore than you know their situation. I have to tell myself that all the time. I only know what I can see, and what that person is willing to share with me. In reality, that is only the tip of the iceberg to who that person is.
I talk to so many people with diabetes. People from all walks of life. There are always a few that have a chip on their shoulder because they are one type of diabetes and are angry at people with a different type of diabetes because they don’t want to be compared. Or maybe they are just angry themselves, and are projecting. I don’t know. I’m no psychologist.
So the Type 1 accuses the Type 2 of doing it to themselves. It’s their fault that they have Type 2 diabetes. They ate themselves into that situation, when they should get up and move around and stop being lazy. Anyone with Type 2 diabetes, it’s their own fault. And they want the two types of diabetes to be differentiated even more, calling one something completely different than the other, because it’s an absolute travesty for someone with Type 1 diabetes to be compared to someone with Type 2 diabetes.
Or maybe the Type 2 doesn’t understand why the Type 1 chooses to give themselves insulin when they could just exercise and eat better, and stop eating sugar, and not have diabetes anymore. That person with Type 1 is just lazy, and by using insulin is taking the easy way out. That person with Type 1 diabetes is such a disgrace, and it is a low down dirty shame that they are compared to the hard working Type 2′s in the world! The person with Type 2 diabetes wants the two types of diabetes to be called something completely different, because they don’t want to be compared to those self-righteous know-it-all good-for-nothing lazy Type 1′s.
The reality is that Type 1 diabetes is an autoimmune problem, where the body’s immune system is attacking insulin producing cells in the pancreas, rendering the person incapable of producing insulin on their own. This is why a person with Type 1 diabetes has to take insulin via injections or a pump, because they have no way to produce it themselves, and without insulin to lower their blood glucose levels and convert carbohydrates into energy, their BG levels go sky high.
Type 2 diabetes is where the body has become insulin-resistant; it doesn’t want to process the insulin it is producing properly, resulting in higher BG’s. Yes, this can sometimes be controlled by diet and exercise, but sometimes it requires medications as well to make the cells in the body less resistant to the insulin that is being made. In some cases, a person with Type 2 diabetes has to eventually take insulin injections too, similar to a Type 1, because they can’t produce enough insulin themselves that meets the requirements of their insulin resistance.
Ready to have your mind blown? Not every person with Type 2 diabetes is overweight and lazy. Just like not every person with Type 1 diabetes got there by eating too much cake.
Cake is delicious. Don’t ruin it with diabetes.
It’s just labels. It means nothing. It doesn’t matter what can we come in, Alpo, Campbell’s, Type 1, or Type 2, we’re mostly all the same inside. We’re a little more of this, and a little less of that. Sometimes we’re better for one purpose, sometimes another. Sometimes we fit in a can perfectly, other times we’re a mixture and don’t make any sense at all.
But we’re all in this together. We don’t have to understand each other completely. We’re lucky if we understand each other a little. We do, however, have to understand that diabetes is not our fault. Forget the science. Forget the stereotypes. Forget what you think you know about diabetes. You know YOUR diabetes. If someone makes a mistake, gives you wrong information, makes assumptions about your situation, try to walk in their shoes. Maybe they are just trying to help. Maybe they are trying to make sure you don’t feel all alone. Or maybe they are the ones that don’t want to feel alone.
Or maybe they are just an a-hole. Yes, there are those people in the world too. However, I’ve found that most people are good. Most people are kind. Most people do legitimately care if you give them a chance, even if they don’t completely understand.
Be patient. Be kind. Accept that we don’t know everything, or the same things. We have much more in common than we often realize, and we’re certainly much stronger together than we are on our own. Diabetes, regardless of type, is much easier to deal with in a community of people who understand some of the nonsense of pricks and pinches and pills and possibilities.
Once you get past the labels, we’re really not so different. Kind of like dog food soup.
It’s the 4th Annual Diabetes Blog Week! If you want to participate, or if you want to see what other diabetes bloggers have to say about the daily topics over the next few days, head over to Karen’s blog at Bitter~Sweet and jump in.
Today’s blog prompt comes from Briley over at inDpendence.
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change?
On May 25, 1961, President John F. Kennedy addressed Congress and presented his vision that the United States would put a man on the moon and safely return him to Earth before the end of the decade. Eight years later, with an unprecedented national determination, and financial support from the top levels of our government, the United States did exactly that.
Imagine if our government, our Congressional leaders, and our medical experts today put the same kind of determination into curing Type 1 diabetes that the brilliant minds of yesteryear did in getting a man to the moon and back. I want to see leaders with the gumption to embrace seemingly impossible ideas, like curing diabetes, and support them with the same enthusiasm and determination as the leaders in the 1960′s did to send a man hurdling out of Earth’s atmosphere toward a floating dustball, have him land, and then safely return. I want to see every single level of government, big pharma, and supposed research foundations, along with parents, children, and people just like me with diabetes working together to embrace solutions for ways that curing diabetes can be done, rather than excuses for how difficult it is. I know it’s difficult. I get how complicated diabetes is. I live with it every single day, and I see my friends thrive with this disease, and I see them die with this disease.
If we can imagine in eight short years how to send a human being on a rocket fuel powered missile 238,900 miles through a vacuum to land on a dusty, dark, desolate piece of planet with no life, air, water, food, or electricity, and then have him travel the 238,900 miles back safely, then we should be able to imagine how to cure a disease that we’ve already figured out how to live with for the past 90 years.
To view other posts on this topic, click here.
It’s the 4th Annual Diabetes Blog Week! If you want to participate, or if you want to see what other diabetes bloggers have to say about the daily topics over the next seven days, head over to Karen’s blog at Bitter~Sweet and jump in.
Today’s blog prompt comes from Melissa over at Sweetly Voiced.
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?
Unless I’m traveling or just too busy to stop what I’m doing (or in denial…yes, that happens), I see my endocrinologist (endo) and CDE every three months, my ophthalmologist (eye doctor) every year, and my dentist twice a year. That amounts to, at the very least, four hours a year in the office of my healthcare team with my pancreas hanging out, my pupils dilated, or my mouth wide open. Sometimes at the same time.
Considering that there are 8760 hours in a year, I spend about .5% of my year in doctors offices in various compromising positions (not counting labs, time on the phone with insurance, time spent hooking so that I can afford my copays, etc.), which begs the question… How the heck am I still alive?
There are plenty of other doctors that I could spend time with too. Presently on my list of docs to find include a dermatologist, a podiatrist, and a psychologist. That last one will likely make my doctor time (and spend) increase exponentially, but that’s a conversation for another day. When I’m less crazy. Because that happens too.
The thing is, I need all of the services and advice of all of these doctors in order for me to stay at my optimal health status and achieve my health goals. Yet, I struggle. What little bit of time I have with each of these doctors, we don’t have a chance to talk about some of the things that they could really help me with probably better than anyone.
At my endo, we talk about diabetes, pump settings, high and low blood sugar trends, A1C’s, prescriptions, and sometimes even new diabetes research and technology. We don’t talk about my struggle with my weight, and how it affects me both physically and mentally. We don’t talk about my depression, and how sometimes I’m smiling on the outside and absolutely falling apart on the inside, and nobody ever truly knows the extent of it. We don’t talk about stress, and ways to manage being overloaded, and strategies to cut it down so that I don’t have to add hypertension and heart disease to my laundry list of sh–stuff to deal with on a daily basis.
At the eye doctor, we talk about diabetes, A1C’s, and the importance of keeping and EYE on things (see what I did there?) in the back of my eyeballs. We don’t talk about how prescription glasses are expensive, especially when you need multiple pairs (stylish regular glasses, plus sunglasses that make you think you look stylish, plus sport sunglasses for when you play volleyball on the beach with no shirt on all Top Gun style). We don’t talk about how much time I spend staring at a computer screen, and whether or not that is good or bad. We don’t talk about anything to allay my fears and anxiety from potential and, in reality, way over-exaggerated diabetes complications. We don’t even differentiate between Type 1 and Type 2 diabetes, but rather treat it as just this overarching definition of diabetes that sucks and makes you go blind, your feet fall off, and your wenis not work properly. And I need my wenis to continue to work properly dangit! (I don’t even know how I got from eyeballs to wenis, but I’m mildly impressed and entertained with myself right now.)
I want my healthcare team to know that, just because it isn’t their area of expertise, all of these various other things in Martin World impact me, and are related in some way, and have the potential to impact my health in both positive and negative ways. Because I’m stressed out that my BG’s are running higher than normal may mean that I don’t check my BG as often because I don’t want to deal with the stress that I feel when I see that high number on my meter. So then I go get something awful to eat to feed the stress with, and then my pants start fitting a little tighter, and I feel like I’m the size of a whale and the idea of an 19th century style corset sounds like a pretty great idea if it will make my pants fit better. Then my pants get too tight and the pressure makes my eyeballs fall out and my teeth point forward.
What I also want my healthcare team to know is that I have absolutely no clue how to bring these things up and talk about them in the time limit and in a way that makes sense to them before they have to run off and see the next patient. I’m doing good to remember to even show up for the appointment most days. If it’s not on my Outlook calendar with an alarm, don’t expect me to be there. If there was one thing I wish they would all ask, it might be, “So all of these numbers aside, how are YOU doing? Feeling okay? Any particular issue not related to insulin, BG test strips, and pump supplies that I can help with?”
Just ask. The answer might be no most of the time. But sometimes it might be yes. And that’s when it is most important that you asked, and that you are there to listen.
To view other posts on this topic, click here.
Today is an important day in Martin World. A day that I look back and reflect on some of my accomplishments.
1. I passed Chemistry in high school. It was the hardest class for me. Tutoring helped. The tutor had a cute daughter. Those last two statements are mostly unrelated.
2. I graduated. Four times. Because once just wasn’t enough. (HS, AA, BS, MS…in case you were wondering.)
3. I was a DJ. On a Christian music radio station. Yeah, I don’t believe that either. But it’s true.
4. I found love. And lost it. And found it. And lost it. And found it again. I’m like a country song.
5. I’ve changed the world. Sort of. I stepped on an ant hill. “World” is relative.
6. I’ve been a President. It’s a lot harder than it looks.
7. I rode my bicycle over 100 miles in one day. Most people have enough sense not to do that.
8. I had dinner with Olivia Wilde. Kind of. She was two tables away from me. I’m still counting it. Can we be friends?
9. I was fired once. They called it a “lay off” because of the recession. Lipstick on a pig.
10. I’ve worked in two libraries so far in my career. I’ve been the token male in both. I’m like a trophy librarian.
11. I’ve been an Apple, an Android, and a PC. I prefer being an Apple.
12. I was voted Most Intelligent in middle school. It was nerdy at the time. Now it’s dead sexy.
13. I grew up on a farm. I delivered a calf. I about had a cow.
14. I had a dog named BJ when I was a kid. I lived on Fifth Street. I’m usually on top of that “What would be your name?” game.
15. I write with Sharpies. People with dry erase boards hate me when I get excited about flowcharts and to-do lists.
16. I worked in a 1-hour photo lab. I got paid to stick my nose in everybody else’s business.
17. I am Jack’s complete lack of surprise. According to the first rule, I can’t talk about this. I do love the movie though.
18. I wear a Mickey Mouse watch. It reminds me that great things start with small ideas.
19. I have jumped out of a perfectly good airplane.
20. I have a tattoo. I’d like to get another one. I just don’t know what yet.
21. I love video games. They are a way that I escape and decompress. I also want my own personal Navi, like in Zelda.
22. I always have more to do than I have time for. In related news, sleep is a nuisance.
23. I like to explore a new city on foot or bike. You see things that you didn’t realize were there. Like celebrities.
24. I love New York, DC, and Seattle.
25. I’ve tried escargot (snails). It’s not my thing.
26. I speak a little bit of Russian. I would like to learn how to speak Spanish. English would also be helpful, some days.
27. I can’t speak in coherent sentences before coffee in the morning.
29. I have pets that are some of my favorite people. Two dogs and a cat. All spoiled rotten.
30. I have moved nine times in my life so far. Books are very heavy. Save your back, buy an e-reader. And get a library card for Pete’s sake.
31. I gravitate toward leadership roles. Which probably explains why my to-do list is so long.
32. Today is my 32nd diaversary. 32 years with Type 1 Diabetes. Making it this long is nothing short of a big deal. But, as you can see, there is a lot more to me than just diabetes.
I’m finally learning to accept some things. Not everything, but some things.
For example, I’ve learned to accept that cooked carrots and mushrooms are disgusting and have no place on the food pyramid. Except maybe underneath the pyramid, as compost, to grow delicious things. Like fried chicken strip trees.
I’ve learned that my dog doesn’t really detect low blood sugars like I imagine he does in my low-brained head. He just likes spoonfuls of peanut butter at 3:30 in the morning. And who doesn’t love that?
A big thing that I’ve learned to accept (sort of…okay, not really) is that I get nervous when it comes to tests. Or things that I perceive as tests, like doctor visits. I don’t know why, but I always dread these appointments. In my head, they are the worst, even though 99% of the time they turn out just fine. It defies explanation.
As well as my life has been with diabetes, my imagination has a tendency to run wild and make things up that don’t necessarily reflect the reality of what I do everyday with diabetes. I think my anxiety is because diabetes is like a really crappy retirement plan: You make decisions based on data every single day in hopes that your annual account statement doesn’t show that you’ve invested all your efforts into a poop factory.
Earlier this week I went to the eye doctor, or more specifically, the ophthalmologist. This is where they check my eyeballs and retinas and all the tiny little veins and capillaries and doohickeys that keep them working to make sure that I have my diabetes in good control and that complications aren’t running rampant in my eyeball holes and causing irreparable damage to my vision and kidneys (which are connected to my eyeballs, somehow). I’m sure it’s a little more complicated than that, but that’s basically the big idea.
I was extremely nervous. Anxious. Full on shakytown while waiting to sign in. It didn’t help that the receptionist had a look on her face like she had just bitten into a piece of cat litter in her sandwich. She wasn’t rude by any means, just not exceptionally welcoming. In her defense, my appointment was at 1:00pm, and she was probably hungry. Plus, cat litter in your sandwich isn’t pleasant no matter how famished you are.
After I signed in, I barely had time to do a quick BG check before they called me back (it was 89, by the way…perfection). The nurse was super nice, but I could tell she hadn’t really been exposed to too many people with Type 1 diabetes before. We went through the standard form field questions for an eye doctor appointment: Height, weight, do you wear glasses, do you have any health problems, what kind of insulin do you use, what book are you going to try to read after we dilate your eyes, will you please put your phone away, did you just roll your eyes at me? You know, the usual.
I told her that my blood pressure was probably a little high because I was very nervous. It was, and wasn’t a big deal at all. She said, very friendly-like, “You should be used to this for as long as you have had diabetes.” I just smiled and laughed. Truth is, I’ve never gotten used to it. I don’t think I ever will.
The biggest disconnect was when she asked, “What was your blood sugar this morning?” I fumbled for an answer. That was at least three checks ago. I don’t remember that kind of information. That’s what BG meters and insulin pumps are for. I have more important questions to answer from my short term memory. Like, where did I park my car? What pocket is my cell phone in? How did I think these clothes matched this morning when I got dressed? I told her what my last BG was, and just went with that. One BG on my patient chart out of all the data points that I depend on every day to keep myself alive really makes zero difference in the grand scheme of things.
So we got through the formalities, and then I met with my ophthalmologist. Through all of the anxiety and nervousness, the experience was rather uneventful, which is a good thing. Bottom line, my eyes look the same as they did when I saw my ophthalmologist two years ago. Very microscopic evidence of having had Type 1 diabetes for almost 32 years, but nothing at all to be worried about. No blood vessels bleeding into the back of my eyes. No kidneys waving white flags of surrender. All in all, a clean bill of health, and a free joke about me being the oldest “kid” that my pediatric endocrinologist still sees on a regular basis.
I’ll take it. Growing up is overrated anyway.
At first, I was thinking that I would toss out this post, or save it for later, in order to respond to the news from the Diabetes Research Institute. I know that a post like this, full of words on a screen, risks getting lost in the mix. But maybe it won’t.
If you read my last post, you know that A-Flizzle surprised me with a birthday trip to Jacksonville to tour the Budweiser brewery, hang out with Jacquie and the gang, get a massage, and go to one of my favorite restaurants in the whole wide world called 13 Gypsies. And my blood sugar spiked sky high. So now you’re caught up. As Paul Harvey would say, this is “the rest of the story.”
I’ve been sitting on this post for a few weeks now. It’s been a really hard thing for me to share. It’s the post I’ve been waiting to write for, like, 23 days.
My blood sugar was sky high, but I couldn’t very well call in diabetic and cancel a quality birthday celebration. Nor did I want to. I bolused for the high, but having been unplugged from my pump for as long as I was, there was really no telling how much insulin it would take to turn things around and get my BG’s back to normal. I knew I would need to feather the insulin over time in small doses so that I didn’t get a big ball of insulin hitting me all at once. It sounded like a good idea, at least. Until it just wasn’t working. Not even a little bit. Not even at all.
So, I did what any abnormal person with a nonfunctioning pancreas would do in the situation: I rage bolused the $h!t out of that high to show it who was boss. And I did too.
Later that night, after we had gone out to a rooftop bar and then to one of our favorite hangouts in 5 Points, Birdie’s, A-Flizzle and I trekked back to our hotel to call it a night. We settled in, I stretched out on the bed, propped my head up on a stack of pillows, and started watching one of the greatest movies of all time that just happened to be on TV that night: Con Air. What? You know you love it!
A-Flizzle was sound asleep, and I was laying there in bed messing around with my iPad and watching Cyrus the Virus battle The Man of Nomadic Eyebrows from the Land of Forgotten Forehead (aka, Nicholas Cage) for a shot at freedom via a crash landing on the Las Vegas strip (don’t blame me, I didn’t write it) when it hit me. Hard. And I remember every single part of it.
In an instant, I had absolutely no clue where I was. I couldn’t figure out what I was doing, even though I was doing nothing. I couldn’t think. I couldn’t concentrate. I couldn’t help overanalyzing every next thought that was popping into my head, and I had no control of what was popping into my head next.
I sat up and threw my legs over the side of the bed. My bare feet hit the cold wooden floor. I sat there, in a complete panic, trying to figure out what was going on. I knew what was going on. I just couldn’t quite figure out what was going on. But everything was so serious. I couldn’t figure out what was happening, what was next, what I should do.
I stood up. I walked over to my BG kit, and sat it on the table. I walked off. I started pacing around the room, stomping hard, trying to figure out what in the world was going on. I could see A-Flizzle in the middle of the king size bed, sound asleep. I tried to yell for her, but I couldn’t. No sound would come out. I started hitting my diabetes tattoo, indicating, trying to make noise and get her attention. Anybody’s attention. But it wasn’t loud enough.
And that’s when it hit me: I was low. Really, really low. And I was standing in the room with the one person that I trust more than anyone, and I could not for the life of me (literally) figure out how to get her attention. What would be so simple any other time, to simply yell or reach out and shake her awake, I could not figure out how to tell my body to do. I just knew that this was really, really serious, and I had to figure out something through my garbled thoughts.
I paced around the king sized bed like a tiger walking a perimeter, establishing his territory. Back and forth, from one side to the other, for I don’t even know how long. All the while I’m trying to figure out how to wake her up. I was fading. The panic was wearing me out. I was starting to think about what A-Flizzle would do without me, and how much it would crush her to lose me when she was right there, so close. What would happen to my Hopper (dog), Squirt (cat), and Bindi (A-Flizzle’s dog) back home without me. How their little hearts would break when I didn’t come home from a weekend away. How my Hopper would continue to look for me at the door long after Amanda got home, just waiting on me to get there to give him a doggie hug.
All I could think was, “This might be the one. That one low blood sugar that I don’t survive. The big one.” I was also thinking, “Dammit, I don’t want to go to the hospital on my friggin’ birthday!” I started punching the corner of the bed because I was so frustrated that I couldn’t get my body and brain to communicate and work properly. Then I thought of big ones, like the big earthquake in California that everybody always talks of but hasn’t happened yet. The hurricane that will come and sink Florida. The importance of having an emergency plan, a parachute. A parachute? A PARACHUTE! For when I fall!
I managed to figure out that if I passed out from the low, it was my pump that would continue to give me insulin and keep me low. I snatched it from my PJ pants pocket, and unhooked it, not bothering to suspend it, and threw it on the bed. I went over to my bag, and found the glowing bright red rectangle that contained glucagon, and held it tight in my left hand. I knew that if I passed out, A-Flizzle would likely hear me hit the floor, and hopefully see the glucagon in my hand and know what to do. If she didn’t, at least my pump was off, so hopefully I would survive long enough for my blood sugar to come back up naturally before…well, before I died.
As I was digging in my bag for that, I uncovered a Level gel. I ripped off the top with my teeth and managed to get most of the gel in my mouth through the lack of motor skills and shaking that I didn’t realize was happening. Once I got the Level gel in me, and gave it time to work, I was finally able to figure out how to reach over and wake A-Flizzle up to help me. By then I was back on the edge of the bed, drenched in sweat, shaking, still holding the glucagon case in my left hand, and completely physically and emotionally exhausted. Half asleep, her training that I taught her in case I ever go low kicked in, and she was able to retrieve two more Level gels and help me get them down before I had to lay down, else pass out from exhaustion. Still, I wasn’t up to a normal and safe BG level yet.
A-Flizzle set a timer on her phone to wake us up every 15 minutes for me to test my BG again. After an hour of that, I was still only at 70. Not too low, but certainly not high enough to go to sleep after such a bad low. I took one more Level gel, and then I was out for the rest of the night. I woke up the next morning at 96. Normal. And completely hungLOWver, worn out, physically and emotionally exhausted from the night before.
I’m thankful that I taught A-Flizzle what to do when I go low. I’m thankful that we have a plan and always know where things are to treat a low, even if half asleep. It’s so important to have something available to treat a low blood sugar, and know where it is even in your subconscious. That is what may save you in the event that you have to build your own parachute. I know it did me. It’s been extremely hard for me to admit to myself, but I know that I wouldn’t be here right now had I not had those gels, known where they were, and the fact that they were easy for me to get into when it was literally life or death for me.
Tomorrow, the DRI is set to share some big news about steps toward an eventual cure for diabetes. I really hope it is everything that we hope it will be. I’d be lying though if I didn’t admit I’m skeptical. Don’t confuse that with negativity. I’m positive that there will be a cure someday, and I’ll be the first one to celebrate tomorrow if there is something to celebrate. I’ve just heard that a cure was coming since my mother was told that there would be one when I was diagnosed at age two, 32 years ago. A cure for diabetes is exactly what every one of us with diabetes, and every parent of a child with diabetes, wants in this world. Nobody should have to see their life flash before their eyes on their birthday because of a low blood sugar like I had to. However, hoping and praying and wishing doesn’t get us closer to that day.
I’ve learned to keep myself grounded in reality. Maybe that’s a defense mechanism so that I’m not constantly let down, but experience says to be patient, diligent, and steadfast today so that we can make it to tomorrow. The absolute best thing we can do is take care of ourselves today, support each other in the diabetes community, both online and offline, and not let our fellow person with diabetes stumble. You can do this, and so can I. Then, when that cure does arrive, whether it’s tomorrow or twenty years from now, we’ll be ready.
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!
I’m not perfect. There, I said it.
The past few days have been a rollercoaster of educational opportunities and lessons learned for me. It’s as if I’m stuck in the Robert Frost poem about two trails diverging in the woods, and I’m constantly finding myself on the one that is less traveled.
Of course, the road less traveled is the one that is supposed to make all the difference. That whole “thrive through adversity” thing, I guess. If I’m being honest though, it’s exhausting always traveling that path. Sometimes I’d like to just travel the well worn option, where I can proceed without so much resistance.
I remember my mom telling me when I was growing up that when you’re stressed out and upset, you have to find your stressors, and get rid of them. That sounds so easy, but in reality, there are a lot of stressors that we have no control over. Sometimes, it doesn’t matter what you do, it’s never going to be perfect, right, or appropriate for everybody.
That is exactly where I’m at right now. From nasty emails that completely blow non-issues out of proportion, to trying to lead a group of people with shifting priorities in all directions, to dealing with supposed professionals behaving unprofessionally, I feel like I’m traveling down a path that more closely resembles a briar patch than it does a simple path less traveled.
It’s hard not to internalize times like these, especially when there are conflicting reports about whether or not you are doing a good job. It’s hard not to take it personal. Sometimes I just need someone to say, “Martin, I know this is hard, and I know you feel like the world is against you because of these few small things, but you’re good enough, you’re smart enough, and gosh darn it, people like you.” Preferably in the Stuart Smalley voice. Short of that, I’d settle for someone that knows just telling me that I’m doing the right thing, because sometimes I’m just doing the best I can and hoping that is good enough.
I guess this is the part that I could link to diabetes. Fortunately, and thankfully, it’s not my diabetes that is giving me the hardest time right now. I’m waiting on new test strips to get approved by my insurance company and arrive, sure. I need to order pump supplies, of course. But really, those things are just another day with the “D.”
I did get to Skype with some amazing Students With Diabetes from Tampa last night, and that was awesome! I love hanging out with people with diabetes (PWDs), even if it is virtually. They certainly reminded me that not all is awful in the world, and even if we get the diabetes blues, PWDs are resilient and forever hopeful.
That is what I have to remember right now. There is hope. Better days are just around the corner. You can’t please everybody, and sometimes it really doesn’t matter what you do, some people have made up their minds from the start that they are going to proceed with their panties in a wad or their boxers in a bunch. I just have to be consistent, and stay positive, briar patch or not.
The advice I gave to the Students With Diabetes last night about diabetes blues is that if you can find a way to laugh about it, you can overcome it.
That said, who wants to get me one of these Lionel Richie cheese plates for my birthday on Saturday? Or you could just donate to my Tour de Cure and help me kick diabetes in the teeth. Either way, you da best, and I thank you from the bottom of my busted pancreas.