Dblog Week

Diabetes as a Disability

Day 2 of Dblog Week 2015 is about those things that we keep to ourselves, and don’t necessarily like to talk about out in the open. Many of us share lots of aspects of our diabetes lives online for the world to see. Today we get to discuss some of the aspects of diabetes that we choose to keep private from the internet, family, and even friends. Why is it important to keep things to ourselves?

DiabetesBlogWeek7

Recently I was asked to complete a survey on employee demographics. You know, the basic questions that it doesn’t take anything more than looking in a mirror to answer. Male, caucasian, brown hair, eyes that change color, glasses when I remember where I put them, no piercings (just holes where they used to be), tattooed, sneakers > dress shoes, untucked > tucked, tie over top button, and plaid if there is ever a choice.

Okay, so maybe they didn’t ask all of the questions that would lead to those answers, but for an employee demographic survey, it didn’t take long to get real personal. One of the sections asked me to voluntarily self-identify any disabilities that I have. I’m thinking, “Okay, so they want to know if I’m physically disabled, if I need accommodations to get to and fro, or something like that.” As I read through the list, I began to feel like it was less and less voluntary, and more and more accusatory.

Disability Disclosure Survey

I will be the first to say that I’m biased when it comes to surveys like this. Whether they are at work, at the doctor’s office, or as part of a contest to win a lifetime supply of alcohol swabs and cotton balls, these questions feel loaded, and require a person to think about themselves in a very particular way in order to answer them effectively. And for the life of me, I have a really hard time thinking of myself as “disabled” because of my diabetes.

I imagine many people with diabetes and other conditions on this list feel the same way. It is extremely difficult to think of ourselves as disabled, or that we might need special accommodations because we have to live with something outside of our control. The fact is, even without any of these things, any one of us could need special accommodations at any given point in time. But does that make us “disabled” because we are strong enough to admit that we might sometimes need help?

Diabetes as a disability is not something I like to think about. I don’t want to talk about it. I don’t even want to imagine it. Even if, in reality, diabetes or complications thereof may become a disability for me, it is not something that I am willing to give more than just a brief moment of panicked thought about.

Diabetes is challenging, but so is PTSD, depression, MS, epilepsy, cancer, and every other alleged disability on this survey. Yet, having any of these conditions does not make us disabled. As much as a disability is a physical challenge, it is also an allowance that a chronic condition is strong enough to limit us from doing the things that we accept that we are capable of doing.

For now, for this survey, I don’t wish to answer. None of the items on this survey, regardless of how many I may have personally, are anything that I am willing to accept as a disability. That does not mean that I may not need special accommodations from time to time, but that simply means that I’m human, not that I’m disabled. We all need help and special accommodations sometimes, and we shouldn’t be labeled negatively because of those needs.

Even for a lifetime supply of alcohol swabs and cotton balls.

The PLAID Journal

I love Dblog Week. This annual event when we hear from the diabetes online community (DOC) about shared themes and ideas is always fascinating. I especially love that Dblog Week is accessible to everyone, and embraced by those who are a part of the DOC and those that quietly just need to know that there are dozens of other people living with diabetes…and doin’ it and doin’ it and doin’ it well.

DiabetesBlogWeek7

Today, the blog theme of “I can…” is meant to showcase the positive side of our lives with diabetes. What have you accomplished, despite having diabetes, that you weren’t sure you could? What have you done that you’ve been particularly proud of? What good thing has diabetes brought into your life?

Conveniently enough, today is the day that my team in the medical library and I published the very first issue of The PLAID Journal, an open access, peer-reviewed journal for and by “People Living with And Inspired by Diabetes.” PLAID is one of my dreams come true, and I am so proud of what we have created, and thankful for the almost year and a half of hard work that has gone into making it something both accessible and legit.

People with diabetes is everyone. The PLAID Journal is meant for everyone. Each of us is touched by diabetes, whether we have it ourselves, or whether we know someone who does.

When my team and I set out to create a new journal, I really wanted to see the things that we blog about and share online reach the academic literature, and become part of what we research, study, and use to progress living well with diabetes. I want our voices of needing better technology, more comprehensive health insurance coverage, and greater access to mental and physical health professionals to be heard, and supported through scientific and social research.

With The PLAID Journal, I want to take the personal things that we share with the world every single day and give them a vehicle to travel beyond just the diabetes online community. I want our passions to reach the people that can provide us with the evidence to create the change that we so desperately need in our diabetes world.

To make PLAID successful, I need your help. I want you to read, share, and contribute to The PLAID Journal. I want you to encourage researchers to publish in The PLAID Journal. Over time, PLAID will only grow stronger because it is built on our voices, our needs, and our experiences. When you read The PLAID Journal, I want you to imagine all of the things you CAN do, even with diabetes. I want you to dream. I want you to be successful.

With diabetes.

PLAID - Start the Conversation

To The Moon and Back

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.

Diabetes Blog Week Banner 2013

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.

Dblog Week 2013 Button

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Just Ask

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.

Diabetes Blog Week Banner 2013

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.

Bank - Saving Up For Therapy

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.

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Star Trek Murder Mystery Dinner Theatre

Make It So…Wait, Low?

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

2012 DBlog Week Banner

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

Viking Opera Helmet

…and proceeded to serenade the sold out crowd.

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

Star Trek Murder Mystery Dinner Theatre

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

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

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

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

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

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

Photo by Nocturnal.Intellect on Flickr (CC BY 2.0)

Learning and Lows

It has been an intense week of blogging about diabetes. It’s been an intense week of living with diabetes too.

I have found so many other diabetes bloggers during Diabetes Blog Week that I may never have to buy another book again to always have new material to read. Our community that is sharing about this disease is so awesome, and BIG. I love that, but I also hate it.

Right now probably isn’t the best time for me to write about diabetes, since I’m still quite upset with it, yet maybe it’s the perfect time. I do well with my diabetes. Most days, I have it handled and am able to show it who’s boss.

Today was not one of those days. I spent a full day outside for A-Flizzle‘s birthday, hanging out with friends, discovering and having a blast playing Ladder Golf, and then coming home and giving my animals a bath. Then I went to meet up for dinner, and wouldn’t you know it…I went low.

It happened so fast. One of those sneaky lows, where I started seeing funny shapes and lines in things and people’s faces that shouldn’t be there. This is something I’ve realized seems to happen sometimes when I’m dropping too fast and getting too low, these really disturbing lines and colors that my brain realizes aren’t right, but can’t quite connect to a low blood sugar and something being wrong. Imagine the world subtly and all of a sudden looking like a mismatched patchwork quilt, kind of like a real life Picasso. That is as close as I can think to describe what it looks like, a Picasso painting. I was studying A-Flizzle’s face, trying to figure out why it looked like her jaw was on her forehead and her eye was by her ear, when she looked at me and said, “Are you okay?”

Photo by Nocturnal.Intellect on Flickr (CC BY 2.0)

Photo by Nocturnal.Intellect on Flickr (CC BY 2.0)

That was when I realized my speech had already left the building. All I could do was shake my head no. No talking. No checking the Continuous Glucose Monitor (CGM). No grabbing my kit and managing to fumble with my testing supplies so I could do a fingerprick. No reaching in my pocket to fish out my keys that have my four emergency glucose tabs on the keychain. No, none of that. I just put my head in my hands and closed my eyes, trying to focus.

A-Flizzle was all over it, as were my dear friends DJ and H1L1. Whatever conversation we had been having, which I think was about the dogs at the table near us, was thrown aside. All the training and education that I’ve given A-Flizzle over the past year and some odd months about what to do if I drop low, and assuring her that it isn’t a question of IF it will happen, but WHEN it happens, kicked in. I have to say, she handled it like a pro, and as unpredictable as diabetes can be, she took over showing it who was boss while I was temporarily put on the bench.

While A-Flizzle was fishing my glucose tabs out of my pocket and feeding them to me and my lack of motor skills, refusing to let me panic, DJ had scrambled to go get orange juice (any kind of fruit juice would have worked, or a regular Coke, but I wasn’t able to tell them that at the time), and my buddy H1L1 was there fielding flying glucose tabs from off the ground before the aforementioned dogs could eat them as treats. I love my girlfriend and friends. This was the first time that I have had a low where I needed a little help since A-Flizzle and I have been dating, and between her and my friends, I cannot describe how thankful and grateful I truly am.

Still, I feel guilty.

I know it isn’t my fault.
I know that nobody is holding it against me.
I know that today was the exception, not the rule.
I know that there was absolutely nothing any one of us could have done to prevent this low. It happened way too fast. My CGM actually alarmed with the low alert while A-Flizzle was feeding me glucose tabs. Way to be on the ball there, technology! (See also: sarcasm)

I also know that I’m telling myself most of this, in hopes that it is true.

The guilt I feel is because there we were having a fine time, carrying on perfectly good conversations, appreciating the day that we had all spent together, maybe sharing a little gossip between friends, and then all of that got derailed by stupid diabetes. Diabetes was like a toddler at the table, eating its peas and carrots and minding its own business, and then all of a sudden demanding the attention of everyone by screaming and throwing a spoon at my forehead. Diabetes should really learn some manners.

I don’t like that diabetes is like that, that it can take over any situation with little to no warning. I don’t like putting anybody else in a position where they have to take on the responsibility of my diabetes. It isn’t fair…not to them, and not to me either. Still, this was one low where I didn’t have to spend precious minutes quietly focusing my way into telling my hands to reach in my pocket, get my glucose tabs, and eat them. I was comfortable enough, and maybe even scared enough, to trust A-Flizzle and my friends to know that I needed help, and to be able to help me. That trust alone tells me that I’m getting better at not hiding my diabetes, and why I admire the people who save us every single day, so very much.