30 July 2013

Diabetes Balancing Act

As a person, I've grown accustomed to multitasking. Emails! Phone! Scheduling! No, kitty! Don't go that way!

As a person with disabilities, I've grown to to be decent at this balancing act. Meds! Need to rest now so I can do more later! Kitty, stop knocking over my medicine!

As a person with diabetes, I've grown to be a multitasker-balancing act-extraordinaire! Insulin! Carbs! KITTY! STOP RIPPING UP THE CARPET! Other meds!

And people who have diabetes should all be certified systems analysts, this thing is so complex. I once tried to make a flow chart of living with diabetes...it was over 10 pages long before I said "screw this, I know what I'm doing, even if no one else does."

But there's another balancing act that we have to deal with: We must balance how serious diabetes is with how normal we can be.

Sure, there's a lot we can do. And I will say out of the things I can't do, only a handful are diabetes related. For example, my beta cells were fired by my immune system, so all the glorious things they made...well, I can't make them any more. But, I also can't hold my breath for 20 minutes straight, or travel faster than the speed of light, or break the laws of thermodynamics (no matter how much my husband might complain about my cold feet...those still obey the laws, sweetie!), or...well, you get the idea.

Sure, there are times when I feel like all of this just gets in the way and finds ways to mess everything up (like normal sleep, since I don't remember what that's like), but most of the time I don't feel like diabetes is a big giant monster that's out to get me. I think it's a sneaky asshole, but not a giant monster.

But on the other hand, diabetes does kill. I'm sure you've at least heard of IDF's new video that tries to get that point across. Honestly, I feel like a big dark cloud that kills you is depression. Diabetes would be more like a ninja who trips you and then, every so often, murders someone with a lancet. Also, I might have missed it, but are there any people in that video that aren't white?

I digress. Diabetes kills people. Our beloved ADA reports it. And we know the increased risks for complications and other super awesome health problems. And even when it doesn't kill you, it makes you feel miserable. Low hangover, anyone?

And we've worked really hard to get away from the "PWD can't do <insert something ridiculous that people think PWD can't do>!" nonsense. We're able to retort that Steel Magnolias is, in fact, not a documentary. We have professional athletes and celebrities and a lot of really awesome people out there punching all the stereotypes in the face.

But we have this responsibility, one that we never asked for, to keep this balancing act going for those who will never get it; we have to show we're "sick", but not "too sick"; capable, but with limitations; thriving, with death looming around every corner, holding a lancet.

26 July 2013

Depression: Realizing when something is wrong

Content Note: This post contains discussion of depression, child abuse, and death.

This past week's DSMA topic was diabetes and mental health.

This is a hard topic for many.

This is a hard topic for me.

I've had depression for a long time, for many years before I was diagnosed, although, looking back, I would say I've had depression since 6th-7th grade. For reference, other people didn't realize something was wrong until the end of 9th grade. I didn't realize something was wrong until 11th grade. I didn't get the real help I needed until the following summer.

Looking back, I can pinpoint the first time I realized something was horribly wrong, although for other reasons, I didn't do anything about it until much later.

I was sitting in health class, a junior in high school. Boring class, full of busy work, with a teacher who could barely muster to say "penis" and "uterus" when it came time for the giggly sex education part of the class.

But this section of the class was different. We were talking about child abuse and how to recognize it and common misconceptions about child abuse. To illustrate the points, we each had to read a news article.

I don't remember the names or many of the "important factual details" from the story. I remember that a young boy suffered his whole life at the hands of both his parents. I remember that they eventually killed him, shoved him in a refrigerator, and left the fridge, abandoned by the side of a dirt road.

I remember reading this story and feeling nothing. There was no shock, no sorrow, no sickness in my stomach. I remember looking at my other classmates, most of whom I had joked with earlier about a teacher teaching sex ed who couldn't even name body parts without coughing or mumbling, and they were in tears or trying not to puke.

Over the years, I had learned to fake my emotions, so no one would really know how bad I was. I instantly told myself I had to cry. I had to cry and make myself look sick to my stomach. I had to fit in with the rest of the class.

And while I was making myself shed a tear, I remember thinking how messed up this was.

I'm making myself cry over a story about child abuse and a death.

Yeah, but everyone dies. I'm going to die eventually, and other people will have to make themselves cry over my death.

But this is a child. An innocent child.

Life sucks.

Why does it have to suck? Why do people have to be assholes?

Because that's how the world works.

And I realized how numb I had made myself. I was so numb, I couldn't even be truly saddened by evil people doing evil things.

And that, for a moment, terrified me. It terrified me how far gone I was.

But I quickly swallowed the terror, allowed a tear to hit my copy of the story, and told myself being numb was the only way to survive.

Many years later, with emotion, reading other people's struggles with depression, like Allie at Hyperbole and a Half, or Jenny Lawson (AKA The Bloggess) (On a side note, if you have not read Let's Pretend This Never Happened, go read it. Right now. I have never laughed harder. Never.), reminds me that I'm not alone in the fight. Depression is a dirty, sneaky asshole. It cheats. It deceives. It is a liar.

If depression has you, know that you are not alone, even though it feels like it. Allie has been there. Jenny has been there. I have been there. And while we might not be able to give you the medical help, we can be there for you. We can be moral support, without the shame, without the stigma.

24 July 2013

I missed #dblogcheck!

Start time: 1:31 PM EDT

My laptop decided to start a dramatic death scene on Sunday night. The screen started to darken every few minutes, and not due to inactivity. I soon was unable to open anything. I knew that it was time to abandon ship.

I entered safe mode, downloaded all the things I deemed important, and began searching for the recovery disk for my laptop.

Turns out Dell doesn't send recovery disks with their laptops anymore. They do send a diagnostic disk, though. I figured I'd try that to make sure nothing was super messed up. A very long time later, after listening to a million beeps and looking at a bunch of patterns and flashing screen stuff, the hardware was deemed to be fine.

Awesome. Now I just had to somehow get the computer to let me make a recovery disk or format the hard drive.

After a million reboots, I finally remember that safe mode was still working. I'm a genius.

I made my recovery disks and started the process of formatting the hard drive.

Since I had spent all day hunting down disks that didn't exist and doing diagnostic testing and being a general idiot, I decided to actually read what was on my twitter feed instead of just responding to mentions.

I had missed #dblogcheck! And reading all the blogs (and then trying to comment on them) from my phone? That's not happening. I had to fix my laptop, at least for #dsma.

It was bed time. Hard drive had finished formatting, and it was at 1% completion for reinstall. I didn't want to wait up, I knew it'd be finished by the morning.

Turns out, it wasn't. When I woke up Tuesday morning, it was still stuck at 1% completion for reinstall. I decided to wait. Maybe I was imagining things?

I decided to try and look things up on my phone, to see if something was wrong, or if a reinstall really took a billion hours.

Nope. Something's wrong.

I thought about my situation: I currently have a brick. Restarting the computer (even though it gives a doom message) is probably my best bet. Worst case: I have to get a new hard drive and a new copy of an OS.

So, I shut off the computer, and restarted it.

Yes, it gave me all sorts of "Your computer is soooooo messed up!" messages. But after maneuvering around all the "You messed up!" menus, I finally found the "format and reinstall" option. It took 20 minutes to reformat and reinstall. After 12+ hours of it just sitting there at 1%.

So, yes. I had a laptop...that was like new from factory with all the current updates for 2009. Awesome.

And I'm still trying to get all the updates downloaded and installed. I finally got Windows 7 SP1 downloaded and installed this morning, which puts my laptop at being current for about 2011, according to wikipedia.

But I still missed dblogcheck. I missed getting to join in community building. I missed the "let's not feel isolated".

And I bet you're wondering what that "start time" up at the top is for. Word tells me that as of that last period (and without edits), this post contains 521 words. Over a half hour (because it's now 2), that's about 17 words per minute. My hands and fingers are in so much pain that I've been reduced to 17 words per minute.

Sometimes it's our health that makes us feel isolated, like today. Other times, it's a lack of technology. Sometimes it's both.

I hope there is another dblogchek, and that things will behave in the Mocha household so I can actually participate.

Now, I'm going to go hold a glass of hot water to try and help my hands.

End time: 2:08 PM EDT

16 July 2013

Things you'll never have to think about when you don't have diabetes

I'm job hunting, and one thing that keeps me worried is if I'll accidentally "out" myself as disabled.

Will my pump or CGM start beeping during an interview?

What if I go low?

And it got me thinking of all the different things that people without diabetes will never have to worry about.

  • Low blood sugars
  • Eating the fridge during a low blood sugar
  • The rebound high after the low and eating the fridge...and the pantry.
  • Rage bolusing
  • Interesting logical processes during a low/high
  • Wondering if you'll wake up in the morning because that low is just not coming up, no matter how many glucose tabs you've eaten
  • Having to eat glucose tabs
  • Excitement over better tasting glucose tabs
  • The joy of seeing a PWD in the wild
  • Pharmacies
  • Insurance companies
  • Exercise
  • Going low/high during an interview, exam, or meeting
  • Having medical equipment start beeping/vibrating every 5 minutes during an interview, exam, or meeting
  • Having to fight to even have your medical equipment with you
  • Bitter melon
  • Cinnamon
  • Tea
  • Paleo diets
  • Eating a cupcake in public
  • Not being invited to social gatherings because "it's just too difficult to deal with you"
  • Other people's grandparents
  • Strip Safely
  • Number of stabs
  • Numbers...all the numbers...
  • SWAG
  • Failed SWAGs
  • Doctor appointments...especially with doctors who don't know jack about diabetes
  • Steel Magnolias
  • Complication horror stories
  • Feeling like a walking pharmacy
  • High because sick or feeling sick because high?
  • When your meter talks to you
  • "You don't have to prick your fingers anymore!"
  • People feel more sorry for your significant other and family members than they do for you...because it's obviously harder to watch than participate*
  • Mail order pharmacies and their miraculous ability to never get supplies to you on time
  • To bolus or not to bolus for protein
  • Burnout

...just to name a few! Feel free to add to this list!

And I know that some of this doesn't apply to all diabetics, and some of it applies to other disabilities as well...

*Not that being a parent or SO is easy, but it gets annoying when you're giving yourself a shot and people turn to your spouse and say "I'm sorry you have to go through this."

12 July 2013

Disabled While Diabetic

Wednesday, I talked about intersectionality and having other chronic conditions on top of having diabetes. I wanted to look in to that today, since it seems we talk a lot about diabetes and complications, but not a lot about other conditions and diabetes.

I know I can look like a seemingly healthy 20-something-year-old, but truth be told, my body does not behave well very often, and not due to just diabetes. There's all the super fun mental stuff (like chronic depression and panic attacks); there's the super fun heart stuff (they thought it was cardiomyopathy, but due to conflicting test results, my doctors gave up and just went back to my old diagnosis); there's the super fun joint stuff (no diagnosis yet, and no doctor wants to deal with it, and they have to think I'm stupid to try and send me to a cardiologist for joint pain so bad I want to saw off my ankles); there's the super annoying minor stuff, like hay fever and skin sensitivities and being allergic to Novolog and plastic cannulas.

And I don't want to complain. I know I actually have it pretty great.

Well, actually, I do want to complain, but only about how this makes some things more miserable than normal.

Take yesterday for example. I initially woke up in the middle of the night due to being 48 mg/dL (and I ate a billion glucose tabs. Gross!), but I kept waking back up because of joint pain. Throughout the day, I increasingly just couldn't handle normal life stuff due to spoons (lack of sleep and pain aren't a great mix). As much as I would have loved to attend the FFL banquet and ball, I'm glad I wasn't signed up for it anyway because I would not have made it past that first half hour.

It's mentally and physically draining to convince yourself to walk all over a conference hall when it's painful to move, painful to exist. It's a mental work out to not be all doom and gloom on top of that. (On a side note, I apologize to anyone who had to interact with a cranky me on Thursday.)

So when we got back to the hotel, I predictably collapsed and took a nap, which was so rudely interrupted by another low (I swear, P4DC and FFL have given me too much of a bolus!) and more joint pain. My hands were shaking so much and my fingers were so stiff that I couldn't even open up the vial of test strips. And when I did manage to get it open, all the test strips spilled out on the floor because I couldn't hold my kit, so all the used and new mingled on the floor in the obnoxious diabetes game of 50 strip pick up.

And it was while I was trying to pick up all the test strips (and ignoring the low...oops) that I realized how alone adding in another condition made me feel. Sure, I'm at a conference where there are all these cool people who actually get what it's like to deal with the diabetes aspect, but adding in one more thing changes the beast so drastically that it's almost like people don't understand it again.

How infuriating is that, to be in a room of people who should be able to fully get what you're going through, but they still can't get the whole picture because they don't have that extra piece.

I'll take half understanding with a willingness for empathy any day, though.

11 July 2013

Oppression Olympics

I know back in May, I said I'd talk about the Oppression Olympics. I needed time and distance to gather spoons and perspective.

Part of my reaction came after some friends (who have different disabilities) rightly called me out for not standing up when I see things that are harmful to them, since they can't always stand up for themselves. And I wanted to honor that and do better by them and stand up against something that is very counterproductive and even harmful.

But what are the Oppression Olympics? Google results will give us a few different definitions, all with the same general definition. The Oppression Olympics refers to the event when people who fall under different oppressions (race, gender, sexuality, class, (dis)ability, etc.) are forced to compete over who has it worse. Oppression Olympics are called out when comments like "being poor makes for a worse life than being a person of color" or "being gay is more stigmatized in our society than being fat."

I'm not saying that examining how things are is a bad thing. Quite the contrary.

First and foremost, the Oppression Olympics eliminate the idea of intersectionality, that there can be poor people of color or fat people who are gay or even a poor, fat, person of color who is also gay. And we need to acknowledge that these things interact and play off each other. For example, someone who is fat and disabled will be treated differently than a thin person with a disability, and that someone will be treated in a different manner if they are a woman vs. a man.

Secondly, the Oppression Olympics leave no winners. When we pit groups against each other and throw each other under the bus, no one wins and no one makes any progress. There is no understanding or camaraderie. We are silencing each other by telling others that their problems aren't as dire or "as real" as ours, when we should be focusing on ways to help one another. And, the great part of winning the Oppression Olympics is, well, congratulations? You've proven your life is the worst to live.

So, what exactly happened? As a part of dblog week this year, one of the prompts was to think about switching diabetes for another chronic condition.

As members of the DOC, we know how terrible the representation of diabetes is to everyone else (thank you, cable TV). What makes anyone think that other conditions don't suffer the same fate? Those of us statistically lucky enough to have more than one chronic condition can probably tell you that representation to the public of our other conditions are just as terrible and they do vary from person to person (although, maybe not quite as much as with diabetes, but then again, your condition may vary).

But more than that, we're pitting ourselves against other chronic condition communities. We're telling other communities that we think their conditions aren't "as bad" as diabetes.

And I can't stand by that. I can't stand by throwing other people under the bus.

As an aside, I was very impressed how many people chose to not trade their diabetes.