Perspective

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.

We Interrupt This Irregularly Scheduled Diabetes

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

BG 220

That’s a lie. I know why. I eat too much, too often, and too late. Or I don’t eat, and then I go low or get super hungry, and then I eat all the things. Dang those holiday treats!

Eat All The Things

I haven’t been working out, exercising, or bringing sexy back. I have a gym membership, so accessibility to a place to exercise certainly isn’t the problem. I always find some seemingly good excuse for not getting there. First I was busy trying to find a new place to live. Then I was busy moving. Then I hurt both hands during the move.

Hurt Hands

Then I got even busier than usual at work creating something that I am extremely excited about. We are starting a new diabetes journal, available to all, and we’re now accepting research and volunteers to be peer reviewers. Check out The PLAID Journal. You can see a couple of videos and news articles about the The PLAID Journal on the Announcements page. Also, the Facebook page for PLAID. (Lots more to come on PLAID, so stay tuned.)

PLAID - Start the Conversation

Then the knee that I hurt while cycling several years ago flared up again. Add to all of that an ever-growing to-do list, and there is always something that keeps me focused on something other than me.

I hate it. I hate the feeling of my blood sugar being high. I hate that I can’t get my BG to stay where I want it. I hate when I prick my finger and see a number that is dramatically higher than I feel because my body is getting used to it. I hate being thirsty. I hate waking up in the middle of the night to go pee. I hate thinking about it. All. The. Time.

I also hate being overweight. I hate feeling like I am the overweight that I am. I know that we’re in an age where we are supposed to accept our bodies and all that jazz, but this is not normal. I can’t just accept this. I don’t feel like me at this size. I feel like I’m stuck in a heavy fat suit, and everything I do is just that much harder because of it.

But for whatever reasons, I can’t seem to change it.

Before April of this year, I was on Weight Watchers, and I was doing pretty well with it. I had lost over 10 pounds in three or four months, and was feeling pretty good. I was on track to get back to a weight and size that I wanted to be. And stronger. And back to a more human shaped geometry, instead of just round.

Martin and Amanda on Bicycles

Today, I’m the heaviest that I’ve every been. Almost 207 whopping pounds. I put that out there for no other real purpose than to make it real. I should be about 170, in an ideal world. And I’ve seen a human skeleton. Short of an anatomical anomaly, there is no such thing as “big boned.” I’m just plain old overweight right now.

As joyous as April started out with Amanda and I tying the knot in beautiful Key West, it ended in tragedy with the loss of our precious little cat Squirt, and I know that losing her has played a role in where I am now. To some it may sound silly (she was so much more than “just a cat”), but she was a part of my life every single day for nearly 14 years. It feels like the loss of an immediate family member, because that is exactly what it is. I think dealing with that loss, on top of everything else already mentioned, has made me do things like eat my emotions and talk myself out of doing fun active things.

Squirt in the Window

Working out and exercising has always been like therapy to me. Be it gym, walking, running, or cycling, it’s a safe place for me to get out all of my stress, frustration, anger, aggression, sadness, and any other negative emotions that I’m dealing with. Some days I only need 30 minutes or so. Other days I might need a couple of hours. It also makes sure that I have a few minutes during normal human hours of the day that are just for me, Martin Wood, where I’m not making sure that the needs of everyone else are being met.

It’s my career choice to help people, and it is a major part of who I am, and I love it, but sometimes in order to help people we have to make the time to help ourselves. I haven’t been doing enough of that. Now that we are in a neighborhood where there is less chance of going for a walk or run and interrupting a drug deal, I finally feel that spark of motivation to get out of the house and move around.

I also enjoy doing other things, like reading, video games, movies, and basically anything that doesn’t involve repairing yet another kitchen appliance in my house. Sometimes it’s hard to make room for those things, but we have to. Down time is as necessary to life as to-do lists and full calendars. A friend said recently that “cancelling a holiday commitment is like heroin.” Try it. Substitute an evening on the couch with the dog and the first half of this season of The Walking Dead. (Beth…noooooo!!!)

Life with diabetes is freaking hard, man. Life with diabetes is about so much more than just diabetes. Life with diabetes is a complicated balance of biometrics, medical therapies, activities, unexpected events, important considerations, random emotions, bright sides, dark places, and things left unsaid that have to be factored into an inarticulate equation that hopefully results in a personal definition of success.

All of this is what it takes to get my A1C where I want it, to get my BG’s on a more level plain instead of high or bouncing all over the place, to get back to Weight Watchers and better control of all of the delicious things that I’ve been cramming into my face hole, to develop the strength and stamina to avoid future injuries, and to drop some pounds and be able to haul ass without it taking two trips. That is what it takes to focus more on the things that I do have in my world that bring joy, for me, Martin Wood. Like these two…

A and H

That is what it takes to start to feel better. To feel happy. To feel able. To feel normal. And if I can’t do it on my own, then I’ll have to figure out who the right people are and get them on my bus to help me get further along down that road. For now, it’s one mile at a time.

–MW

Frequency

Frequency is a very interesting thing in Diabetesland. We base our lives on frequency. Frequency is in how many times a day we check our blood sugar, to how many times a year we see our endocrinologist, to how often we exercise, to how many showers we take a day (or week, if you’re kind of a Stinky McStinkerson).

Just like daylight is defined by the existence of night, frequency is sometimes most obvious when it is absent. For example, it’s much easier to spot a day or a week of not checking your blood sugar when you’re accustomed to checking it eight times a day. However, if all you do is one fingerprick a day, then a few days of no fingerpricks at all really doesn’t seem like that big of a deal.

I find that is where I am with sharing my life these days on my blog, in real life, about diabetes and otherwise. My frequency of sharing has diminished over the past long time, where I now find the task of sharing much of anything with other people extremely hard. And I don’t notice when I’m not opening up near as much as I used to, because my normal now is being guarded and closed off from others. I’m even guarded with those that I care about and who care about me the most, with very few exceptions.

But I have so much to share. So I have to figure out how to get past this being guarded baloney. I have to let my defenses down a little, and teach myself how to share Martin World with complete strangers and not so strangers, like I used to. I miss sharing, and I miss the conversation, and I miss the empathy and “Aha!” moments that come with the sharing of a story.

I have to learn how to trust that people aren’t going to hurt me with what I have to share, and have the courage to just put whatever it is that I have to say out there, and I’m finding it extremely difficult to begin. Again.

That is what this post is about. I’m sure I have some very poignant blog posts bottled up in me somewhere. I’m sure I have some ridiculous, hilarious, and emotional posts as well. So much has happened over the past long time that needs sharing. The list is very long, and I have been very selfish by keeping it all to myself. I apologize for that, to you and to me both.

My goal is to start to share again. I have so much catching up to do. I may pull from my experiences today, or I may pull from events that happened months and months ago. The goal is to share, and in the process of sharing I’m hoping that I can beat the demons inside of me that make me afraid to open up. I need the conversation. I need the attention. I need to feel closer to people, rather than so detached. Maybe we all do.

Some of what you read after this post will be diabetically speaking, and some of it won’t be. But it will all be right here at Diabetically Speaking. Because I just renewed my hosting plan. And because it’s me, Martin Wood, and I have a story to tell.

Frequency, to be determined.

Pillow Talk

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.

Briar Patch

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.

SWD_02_06_2013

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.

HelloBrieOR

ADATdC2013

 

How About No Bear

Social Media and Medicine

Today, October 1, 2012 is “No D Day.” Today is the annual day to take a step away from diabetes, to do something different, to share something new, and to not mention the “D” word that so many of us live with every single minute of every single day. For me, it’s even more special, because this is the first time that I’ve visited my blog to share with the world in over two months.

You can find all of the “No D Day” posts on Twitter by searching for the hashtag #noDday, or you can visit Ninjabetic.com for a list with links. I hope you enjoy this and all of the “No D-Day” posts today. As always, we will continue to work, and share, and push for a future where every day is a…

No D Day 2012

I’m a joker. No, not like the Steve Miller Band song (although, that is a great song…”I’m a joker, I’m a smok…” Nevermind.). What I mean is, I love a good laugh. Lately, I feel like I’ve been so busy that I haven’t had time to laugh as much. I haven’t had time to stop and appreciate the humor in things. I haven’t had time to stop and sniff the chihuahua eating venus fly traps. (What? Those TOTALLY exist.)

Most of my time lately has been spent working and traveling for work. In the past three weeks I have been up and down the state of Florida three times teaching physicians and medical students all about how social media and medicine collide. Basically, this is what happens during the Social Media and Medicine workshop.

First, my colleague and I get a bunch of physicians and lock them in a classroom. Then we start to mention social media, Facebook, Twitter, and the fact that people are sharing information online, and they go all…

How About No Bear

Then they spend two hours being exposed to all the various social media vehicles, why social media is important, how patients and physicians are actually using social media for good, and they start to get all…

Finally, by the end of the workshop, we reach the point of…

Dammit Jim LOLcat

That’s when we know that our work is done, and we move on to the next workshop in another city. Nothing makes me happier than a health professional embracing LOLcats. Okay, LOLcats and social media. I love being a medical librarian! And soon, I hope to slow down enough to share more of my world with everyone again.

(Also, this was my very first blog post using a MacBook Air that a friend let me test drive for a week. TOTALLY different than the PC that I’m most familiar with and accustomed to, but I have to say…I kind of love it. Dear Santa Claus, I’ve been really good (mostly) this year…)