19 May 2013

Diabetes Blog Week 2013 Day 6: Diabetes Art

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

17 May 2013

Diabetes Blog Week 2013 Day 5

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!

A unicorn.

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.

16 May 2013

Diabetes Blog Week 2013 Day 4: Accomplishments

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.

15 May 2013

Diabetes Blog Week 2013 Day 3: Memories

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.

14 May 2013

Diabetes Blog Week 2013 Day 2: We, The Undersigned

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.

13 May 2013

Diabetes Blog Week 2013 Day 1: Share and Don’t Share

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? 

Dear Doctors,

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.

So stop shaming me for being a human.

01 May 2013

Reproduction While Disabled

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.

Because I am a person. And I am loved.