I can't piece words together, not in any eloquent way, anyway. It's like my brain was suddenly told to move as slowly as frozen molasses in the middle of winter. I try grasping for words, for concepts, but they float away, slipping through my fingers. But for some reason, just about everything is hilarious, until you tell me to shut up. Then my brain completely shuts down.
My skin is clammy, crawling. My body feels like it's encased in a million tons of lead. My very essence, however, feels lighter than air, like if someone just gentle blew on me, I'd float away. I guess that's where the heavy armor comes in, otherwise I might ride away on a gentle breeze.
My heart thuds in my chest like I've been running a marathon. It vibrates my rib cage, trying to leap out.
My hands tremble as if every movement I make could be the decision between life and death. Between the trembling and the clammy hands, I can't open anything. Whoever thought up those safety seals for the liquid glucose drinks obviously never tested these things with people who were low. I mean, I can barely get them open half the time without the help of sharp objects when I'm normal.
My body just wants to slouch and fall over, its weight becoming too much.
The thought of food makes me sick, but I shove it in as fast as I can. It's pure panic. I can't taste anything, but I get the texture. And yes, chalky isn't just a flavor.
Slowly, surely, my body begins to feel real again. I feel myself settling back into my body, my heart slowing, my muscles strengthening, my mind clearing. Words that were no where near on the tip of my tongue are starting to come easily. There's warmth in my hands, which are shaking less than before. I can finally hold a glass of liquid without spilling it everywhere. I can taste what I ate before. Oh god, why did I think that was a wise food combination.
I feel hungover, at least, people tell me this is what a hangover feels like. I feel exhausted, like I ran that marathon my heart thought we were running, but without moving an inch.
My hands, my fingers...it still feels like someone else is moving them, my body not quite my own again. While the words come more easily, while I can communicate more or less what I mean, there is no character to what I say. My clothes are soaked from sweat, my hair also damp.
My body slowly comes to rest at normal, my mind always reaching "normal" last.
This means that diabetes is giving me two middles fingers...all last week and all this week.
"Hey! You know how you've eaten this exact thing, measured out, 5 billion times before? Nothing you do will work this time!"
"Hey! You know how you haven't done anything yet today? SURPRISE GOOD MORNING LOW!!!!!"
"Hey! You know how you just changed your site? Yeah...it's not working any more."
"Hey! You know how much you hate the GGMS beeps in the middle of the night? You're going to hover, right at 190 (my "high" set point) all night long, so it will go off every five minutes, even if you acknowledge the previous alarm!"
"Hey! You know how your other meds haven't caused bg havoc in a few months? Welcome to 400 an hour after taking them!"
"Hey! You know how you've been really good lately about avoiding door handles and not bumping your sites into doors or walls? You are going to be the biggest klutz over the next few weeks."
"Hey! You know how the cat hasn't been trying to steal your pump or CGM in the middle of the night? Yeah...good luck with that. At least the CGM will be beeping incessantly so you can find it."
Diabetes, sometimes you are a bigger asshole than an actual asshole.
I confess: I'm a nerd! I love data! I love piecing stuff together!
Which totally makes me perfect for diabetes. I mean, this is such a data heavy condition.
I'm also an engineer (in training. Yes, that's the technical term for a person with a BS in engineering who passed the FE, an "engineer in training"). I'm also an electrical engineer (who emphasized in power and energy, but this part is irrelevant to this post).
Unsurprisingly, this meant I took a fair amount of math in college. I actually rejoiced when I finished my last math course, but not because I dislike math, but because I hated our math department. I also took a few statistics courses.
What may surprise a lot of people is how much statistics is involved in engineering. And it can be frightening how much hand waving-engineering magic actually goes in to very important things. If you ever are on a plane with my husband, I'm sorry for this exact reason. He will go on and on about how certain planes failed and engines failed and how terrifyingly thin the actual barrier is between you and the outside while you're in the air. Statistically, though, your greatest threat in the air is pilot error. Comforting.
Statistically, I'm know I should be more terrified of lightning striking me than being attacked by a shark. Statistically, I should be more stressed about getting in to a car accident when I'm close to home rather than when I'm driving somewhere new. Statistically, I should be more worried about the things that I'm not as worried about, just like I'm not as nervous driving as I am flying.
But I've already won the statistics lottery, many times. I have type one diabetes. All my siblings have type one diabetes. My body hates me in other weird ways. I've experienced drama and trauma that most people don't.
So, when statistics tells me I should be more worried about x, rather than y, I call it a liar.
And that's the thing about test strip accuracy. Even though it's supposedly guaranteed to be within 20% (and let's be honest, that range is large enough to drive a space shuttle through it) something like 98% of the time, I will worry about that 2%, not because it is common, but because it is disastrous when it happens.
Let's crunch some numbers, here. Let's pretend I check 10 times a day, to make the math easy, and that my 98% SWAG is correct***. The probability that all those numbers are within that 20% range for the day is .98^10, which is about 82%. That's not too bad, but it's still a B-, which is still passing. For a week? That's .98^70 which is about 24%. That is terrible. I'm supposed to make life altering decisions when there's about a 1 in 4 chance that all my tests results will be within a giant range, every week? (And, for those curious, for the year, that's .98^3650, which is pretty much nothappening.) How am I supposed to not worry about something like that?
Let's look at that 20% number as well. I'm going to use mg/dL because that's what I'm familiar with. Let's pretend that my range is 80 to 120 and my target is 100 (because who doesn't love a wonderful 100?). So, I'll have my handy dandy correction formula which will look like this:
(BGreading - target)
Where ISF (insulin sensitivity factor) is the X when we general write it out like this: 1u:X>target (more diabetes notation! YAY!) For simplification, we'll call my ISF 50 (For example, if I was 150, I'd take 1 unit, using these numbers). Disclaimer: use the formulas and numbers you and your health professionals have decided on. I'm pulling these numbers out of engineering magic air, like the airplane.
So, let's look at how much a dose can change based on that 20%. Pull out your pre-algebra! We're looking at slopes (for my math people, derivatives) and math!
The slope is 1/ISF = 1/50, while our independent variable is our BG reading.
So, let's take a look at some readings:
If I'm 100, my meter could show 80 to 120, which would give me a correction range of -0.4 units to +0.4 units, which is technically an infinite error, since I should really be giving myself 0 units.
If I'm 150, my meter could show 120 to 180, which would give me a correction range of 0.4 units to 1.6 units, which is a 60% error, since I should be giving myself 1 unit.
If I'm 200, my meter could show 160 to 240, which would give me a correction range of 1.2 units to 2.8 units, which is an 40% error, since I should be giving myself 2 units.
If I'm 250, my meter could show 200 to 300, which would give me a correction range of 2 units to 4 units, which is a 33% error, since I should be giving myself 3 units.
And so on and so forth.
Percent error being calculated by (deviation from expected dosage)/expected dosage. So, for example, if I expected to give myself 1 unit, but the result said to give me 1.6 units, that's (1.6-1)/1 =.6 = 60%. For those of you interested, this simplifies down to*:
(1.2*RealBGreading - target) -1
The percent error does go down as the number increases, but that has to do more with the target value becoming smaller and smaller relative to the actual BG reading. What you will notice that is increasing, besides the BG number, is the range of dosages.
Part of this tells me I should really stay as close to my target as possible to minimize the range of dosing errors.
But what this tells me more than anything is that we are living with crap standards.
And we are expected to make decisions based on these numbers every hour, every day. Our doctors judge us based on these numbers every time we come in.
How are we supposed to feel safe or know how we're actually doing when there is more accuracy and precision put in the GPS on my smartphone**?
I want more accurate and more precise test strips (and meters), not only to indulge my perfectionist side, but because my life depends on it.
*This is the same as
1 - (0.8*RealBGreading - target)
** I don't know if there actually is higher precision standards for the GPS on my smart phone, and I'm too tired at this point to look it up, but is sure as hell feels like it. At least I know where I am and know where I'm going with that sucker.
***So, I looked it up. Apparently, it's 95% of the time, not 98%. This means, testing 10 times a day, there's a 59% chance that all the results are within the +/- 20% (or +/- 15 mg/dL for readings lower than 75 mg/dL) for a day, a 2% chance for the week, and and even sadder "this is not going to happen" for the year.
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.
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.
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.
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.
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.
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.
This is the day 5 post for Diabetes Blog week from me! You can get more information here.
This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!
I had made this point to a friend when my diaversary came around this year, and I guess it's kinda inspired this.
Part of You Had to Die
In order to be who you are today
Part of you had to die
But not just a simple part in the way
A part that will never let sleeping dogs lie
And that is not all that is gone
All the different possibly yous have vanished
And to the darkness with no dawn
To the different universes, banished
We may cry for what will never be
And mourn the loss of what has been
And wonder what we'll never see
And linger on what can't be again
Because part of you had to die
So all of you could learn to fly
This is the day 5 post for Diabetes Blog week from me! You can get more information here.
I am rather...infuriated by Friday's prompt, pretty much demanding participation in the Oppression Olympics (TM), but my frustration and curse-laden post explain why that is such a problematic and terrible prompt will have to wait for more spoons.
In any case, that means I'm going for a wildcard.
What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal - it flaps its flippers and barks every time you get a good blood sugar reading!
Because who could deny Agnes
Video description: Unicorn carnival game scene from Despicable Me. Contains flashy stuff.
And unicorns fart magic and poop rainbows (speaking of which, did you know "unicorn poop" is the first suggestion for typing in "unicorn" in google images?), which are in desperate need when I'm having a cranky high or trying to crawl to the fridge when low. In fact, my unicorn could carry me to the fridge. And maybe that magic could help with those bad blood sugars.
And unicorns just go so well with cupcakes.
And My Little Pony: Friendship is Magic...who could deny the awesomeness of unicorns?! And my unicorn might secretly be a princess and turn into an alicorn and then we could fly to my endo appointments.
And it could stab people who make ignorant diabetes comments...or make their mouths magically disappear...I'm starting to think this would be my favorite perk.
This is the day 4 post for Diabetes Blog week from me! You can get more information here.
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).
I think there are many accomplishments that I've tackled over the past 11 years.
I've gotten my a1c back down, and I'm working on getting from the mid sevens to the sixes.
I've called and made appointments with doctors, and I hate making phone calls and I hate doctor appointments.
I've pulled myself out of diabetes burn out.
I've started on a CGM and I've been using it and listening to it.
I've been willing to try new medications to help control my diabetes (besides insulin), and even though all the ones I've tried so far have not worked (my endo says I must have hit the genetics jack pot to have all this stuff not work), I've been willing to keep trying.
But my biggest accomplishment? I'm at a point in my life where I'm okay with having diabetes and all my other genetic jack pot disabilities. I'm not fighting being who I am anymore.
And don't ask me how I got here, because I really have no clue.
This is the day 3 post for Diabetes Blog week from me! You can get more information here.
Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.
So, I shared some memories I have around diabetes (and disability and general) and people's assumptions about love and families just a short while ago for BADD. I suggest taking a minute or two to read (or reread) those. Because those are some of the most prominent memories I have. And I'm going to cheat here, because all of these memories (and all the ones previously mentioned) are all equally memorable to me.
I remember being diagnosed. I even reminisced when my 11 year diaversary passed on the 10th this month. I remember chugging milk and apple juice like there was no tomorrow. I remember going to the pediatrician and doing the lovely "pee in a cup and we'll dip in a stick", except he was all out of cups, so it was a Styrofoam bowl. I remember the ketone stick pretty much instantly turned to "OMG YOU HAVE ALL THE KETONES IN YOUR PEE". I remember my mom and dad having to hold me down to do that first finger poke with my older brother's meter. They hit a nerve. He also had it cranked up to vampire setting on his lancing device. Don't worry. We cleaned and changed everything before and after. I remember that his meter read "HI" for that test, meaning I was over 600 mg/dL.
I remember going to school that following week, and my peers being pretty unable to look me in the eye.
I remember two weeks later, when I started on the pump (I know, this is not typical. My family is a multi-D family and I was not the first nor the last, so the endo was nice to me) and I wasn't allowed to spend the night at my friend's house for her birthday because I still had Ultralente in my system (and yes, being reminded that I was even on Ultralente makes me feel super old).
I remember finding friends who were just as broken as I was a few years later. They were and still are able to look me in the eye.
I remember teachers and students trying to take my pump from me because they thought it was a cellphone, on multiple occasions.
I remember going to a debate tournament, and another student with T1 had a seizure from being low. I was the only one who knew he was diabetic. The paramedics were trying to give him things for the seizure, not for the low.
I remember being 28, lying on my bedroom floor, eating a whole jar of glucose tabs (grape), including the dust at the bottom. My meter was on the floor beside my bed, and after I got down on the floor, I didn't feel like it could get back up. And then after eating all the glucose tabs and the dust, I decided to take a nap on the floor. My mom found me and kinda freaked out (sorry Mom...because that happened more than once, although the other times were 32 and 33).
I remember that other student and I being at the top of our class in high school and getting to tell my peers to stuff it (except, maybe in different terms) because we were both kicking everyone's butts on top of dealing with T1.
I remember my AP Physics teacher pulling me aside and telling me he wanted to fail me because I had been missing class for doctor's appointments. I remember asking how I was doing in the class, and apparently being at the top, in spite of missing those classes, was troubling. Because succeeding in spite of hardship means there must be punishment. Or something.
I remember being in DKA on my cousin's wedding day, and missing the wedding because I had a migraine on top of it.
I remember the first date I went on with my husband, where he accepted me for who I was, broken body parts and all. I remember him not caring that I was a cyborg. I remember him looking into my eyes. I remember him holding my hand and not running away.
I remember going to my first FFL conference with my younger brother and parents. And my second. And my third, with hubble bubble tagging along. He wanted to start testing like everyone else there. He felt left out of the cool kids club. And then I reminded him that it's like that for all these kids every other day of their lives. They'll never have a place to feel normal except for spaces like this.
I remember wedding dress shopping with my maid of honor and cursing that there wasn't a better place to put a pump in a dress, especially a wedding dress. There needs to be a better place and not so awkward to access. Maybe I should've just had my husband reach for it an bolus for me.
I remember these things, the good and the bad. But somehow, the bad seem more numerous. I think I have a magnet set to attract terrible people. But some good ones found me too.
This is the day 2 post for Diabetes Blog week from me! You can get more information here.
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?
Honestly, I liked the petition to standardize TSA screenings for people with diabetes. It's a pain to fly, being a cyborg. And I hate getting pat downs. And I hate getting the lecture every single time that it doesn't harm the equipment and that I'm just being whiny for requesting a patdown that shakes me up inside, no matter how many times I've gone through it.
So, as uncreative as this is, I'm going to go with yelling at the TSA to get their act together and standardize their screening process. And do it soon, please. I'd like to have this all figured out before I leave for FFL.
This is the day 1 post for Diabetes Blog week from me! You can get more information here.
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?
I know you are all very busy and Very Important People (TM). And I understand. You have fancy degrees and spent years and blood and tears and sweat to get those fancy degrees. And I understand that there's a fundamental lack of doctors and funding in order to give me, and people like me, more than an hour of your time (if that) each year. And I appreciate that hour, I really do.
But, let's pretend for a few minutes that you have the time and energy and resources to get to know your customers better, because that's what we are: customers.
I don't want to be shamed by you for eating the fridge at 4AM when I drop down to 45.
I don't want to be shamed by you for eating food with carbs.
I don't want to be shamed by you for eating. Period.
So I eat the pint of Ben and Jerry's every once in a while when I've had a really bad depression day.
So I eat french fries and pizza and cereal.
So it messes with my blood sugars.
I check. I correct. I wear Bubbles (CGM) and Navi (pump). I listen to Bubbles. I use Navi. I troubleshoot. I balance. I work on things.
And sometimes life happens. Sometimes restaurants give me regular Coke instead of diet and I'm too excited about a movie to notice. Sometimes sites fail. Sometimes Bubbles lies. Sometimes my body just gives me the finger and decides to not cooperate.
This is my post for BADD 2013. You can read other posts or submit your own here.
TW/CN: (dis)ablism and ablist slurs
I imagine most people with disabilities get crap when talking about families, starting, joining, and making them.
I remember the first boyfriend I had, and the comments that my grandparents made: "Who would want to date you?"
I'm sure they don't remember it. They never remember their hurtful comments (whether they're about disability or race or class or sexual orientation or gender or any of the other things where they can just be down right mean). I'm sure that the other people there don't remember it either. Why would they? This was just another comment in a long line of "Mocha, you aren't allowed to start a family because you're disabled. Disabled people can't be loved by people, you silly thing that thinks she's a person with full rights."
I remember when my husband proposed. I remember all the concerns that people had for him and talked about him like he was some martyr for being with a person with disabilities. I remember people that I considered my friends asking if he was okay with not having any children because somehow Steel Magnolias was a documentary.
I remember on the day of my wedding when the photographers asked to get a picture of our feet (because you need a good shot of those shoes. They're expensive!) and they saw my medical ID. And then the whole mood turned into a pity party. For him. As if he was throwing his life away.
I remember being in class, and male peers somehow assuming they had a right to know where I kept my cyborg parts when I wore a dress or skirt and what I did with them during sex. And when I asked them where they kept their pancreas when they wore their clothes and what they did with it during sex, I was told I should be grateful that they assumed that "handicaps could even have sex."
I remember having a conversation with my in-laws this past Christmas where forced sterilization for people with disabilities was seriously proposed. And the only counter point (because I was speechless) was that you can't just say that out loud because people might think you're like Hilter. Not because, you know, people with disabilities are people. (For the record, I also had to explain why blackface was problematic...so...not so good with SJ stuff, these people.)
I remember these things, and they stay with me. I am fortunate to have a partner who stands by me and knows the truth about being with someone who is disabled. I am fortunate to be able to afford the health care that will one day allow me to have children.
Because I am a person too. I deserve the right to fall in love, and get married, and some day have children (whether adopted or not). I deserve the right to be a future parent and a spouse.