Want to hear something crazy?

In one week I will have been on the animas insulin pump system for four years.

Four years ago I was through the moon happy to be off shots. Being on a pump meant being able to set my basals for different times throughout the day, it meant not going low from a lantus spike at midnight and having to stay up and chug an entire pack of juice boxes every night, it meant not staying up until 2am trying not to let my bg drop any further. It also meant the end of those long nights when my mom and I would watch old TV shows or  chat about life while we waited for the next testing interval.

That I have missed.

Not the exhaustion, not being tied to a certain time lantus had to be taken, or feeding the insulin in the middle of the night and fighting highs in the morning, but that time, when mom and I were the only people in the world who were still awake.

I have a lot of beautiful memories of my mother sitting on my bed looking like death. I wish I was creative and could paint the picture for you. They were not exactly happy times, but I remember the strength and beauty that I saw in my mom at those times, and those night when she slept at the foot of my bed were precious in a twisted sort of way.

It was something we shared, our special time together. Not that we didn't spend time together during the day, but there is a special bond between people who have fought death all night and woken in the morning to live as if life was normal.

My insulin pump changed my life. It freed me from shots, and from lantus, but it also took something. While I am so thankful that most nights. I can sleep almost completely interrupted, sometimes I miss those exhausting nights we shared. I am so thankful that I was able to see my mother's love and dedication to me in such a poignant way, and I am so glad that we shared those times.

Thanks mom.

An Up Hill Battle

This week has been rough, when I decided I needed to turn my diabetes management around I knew it would be hard, but not this hard.

I feel like every time I get myself to a decent number, it is time to eat again. And I know that many of the high numbers I am seeing are from food choices I am making (like eating ice cream or cupcakes) but it is hard for me to say no. I do not want to refuse desserts because I feel like then I am contributing to the idea that type one diabetics should not eat sugar. When someone says "Oh but you can't eat this can you" I feel like I just have to prove them wrong.

It is stupid, and I know that, but no one ever said a diabetic's relationship to food is simple. I cannot wait for the summer to be over so that I can escape the parties and 'fun food' and go back to a more normal diet.

So here is to the end of summer (which thankfully is in sight)!  And here is to trying to make better food choices. =)

Managing

I have always hated the term Control, as in "Is your diabetes under control?" 

First of all, it is a rude question. you do not ask someone if their cancer is under control, you just ask how they are. 

Secondly, it implies a straight line. Often the question even comes with a hand gesture, running one's hand in a straight line to further imply that my blood sugar should be steady and constant as a rock. 

Well here is some news; no one's blood sugar runs in a perfectly straight line. Not even non-diabetics. And my blood sugar is not 'under control'. Diabetes is akin to a wild animal; imagine letting a monkey loose in your house, you would not be trying to 'control' it, to teach it to behave, you would be minimizing the damage. You would react to what the monkey was doing as fast as you could, but it would still make a mess, it would be running the show. 

Personally I prefer the term managed; as in I am doing what I am supposed to, and when the monkey starts flinging poop it is not my fault. 

The truth is, I am not managing my diabetes either. When I started college life got very busy, and for the first time in four years I was not surrounded by people who knew I had diabetes. I was not embarrassed by my diabetes, but I started to notice how incredibly inconvenient diabetes was. 

Well this is going to be the start of a new leaf for me. I am starting over, and I am going to share that journey with you because I think it is important for people to know they are not alone, to know that they can get support, and to stop playing the blame game when it comes to diabetes and just blame the monkey. 

Feeling awfully alone

About six months ago I had a bit of a freak accident, while I was wearing an ear bud in my left ear, I was electrically shocked. The cord to the ear buds had peeled back and a wire was exposed, this wasn't like when you hear static in your headphones, this is like lightening to your inner ear.
This obviously caused a few problems, a bit of hearing loss (luckily still within normal ranges) but still enough to be annoying, and permanent nerve damage in my left ear.

Nerve damage, what does that mean you ask? well, for starters it means pain. It means that playing the piano, or listening to slightly loud music in the car with my sisters, or sitting in worship at church, or talking on the phone through my left ear, cause me pain. It means it will never get better. It might mean that if I'm not careful it could get worse.

I am so sick of going to doctors and being told there is nothing they can do, I'm sick of being told it won't get better, I'm sick of wearing ear plugs in church, I'm sick of keeping my distance when my sisters gather round the piano and sing Christmas carols, I'm sick of being in pain, I'm sick of misunderstanding people, and I'm sick of people acting like it is no big deal.

I'm alone, endless googling and sharing my story with friends and I still have never heard of anyone living with nerve damage in their ear. So if this story resounds with you, if you feel like I'm telling your story, or even one similar, please let me know. No one should feel alone.

My Friend the Diabetic

"My friend the diabetic" she says faster than lightning as she tells some story from her adventures at school.
"Does he have a name?" I ask staring her down with a look of disapproval; we take care of our own.
"yeah... but you don't know it...."

"My friend the diabetic" is a common character in the tales of my freshie sister, and on Sunday I got to meet him (or maybe that's too strong a word... I saw him) in person.

Katie (Freshie sister) goes to an art school... and they do weird artsy things; like having an acting show case. So my mother, my best friend (the diabetic, but MY friend the diabetic now, not HER friend the diabetic .. yeah that's a lot of sugar in one room!) and I sat down the the freakishly small auditorium of this school (you'd think an art school would have a bigger place for their audience) to await my lovely Katie appearance (yeah she was the LAST scene)

Like two hours later, Gracie (My friend the diabetic) leans over to me... for like the thirtieth time cause were bored and whispers "Hey that's the diabetic."

So we spent his whole scene looking for his insulin pump (boys are so lucky, those things are much easier to hide in baggie cargo pants) and found it (Left side lower pocket=).

After the play Gracie decided to 'call dibbs' on Katie's friend the diabetic. So not fair since she already 'called' at least three other boys in the room!

Anyway.... that's My Friend the Diabetic... and no, it's not nice to define people by their disease so now I will say, this guy was attractive, a good actor, and possibly had an adorable accent. (were still trying to determine if he was faking it for the scene or not)

Meeting diabetics in the wild can be awkward... we all deal with this disease differently, and outside of the conferences and camps... it gets a little weird.

Do You Hear the People Sing?- cause it's killing me!

okay, lets get something straight... I LOVE Le Miz... and I'm not one of those annoying girls that only likes it because of the movie... I grew up listening to (not all... cause some are just not meant for kids=o) those songs... I knew who Jon Val Jon and Javier were before I could write (but I'm still not sure on the spelling!)

In fact, I love music in general... listening, singing, playing, I love it all! No matter what I'm doing... there is music in the back round (okay sometimes I wear headphones to give my poor family a break... but we'll get to that.) I've thought several times about what I would do without music... I even watched a TV show about a deaf girl and gave some horrified thought to life without hearing...

Well I might get to find out... Last Wednesday whilst doing my school work (at home) I was getting ready to read a novel for British literature... The Mayor of Caster-bridge a wonderful book... but so not the point! Anyway I'm getting ready to read it, I sit down in a nice comfy chair with my mama's micro fiber blanket... man those things are soft! and I put my head phones in. Now earlier that day I had noticed that some of the rubber was peeling back on these head phones... but being the cheapo that I was; I still used the (they still worked so they were fine...right?) well I had one ear bud in, and went to press play on my iPod .. and my head phones electrocuted me=O by the grace of God I only had one ear bud in....

So now, fast forward to Monday, I'm waiting to go to the doctor (for the first time by myself... yay for being 18!) because even the smallest noises are painful, and there is a constant ringing in my left ear that gets worse when I lie down.

Yeah, I can't make this stuff up you guys! but don't be scared to use your ear buds (though I have second thoughts about the noise cancellation ones that go super deep.... yeah not the best choice!) this only happened because
#1. my head phones broke, and I kept using them
#2. the wire was exposed
#3. exactly WHERE the wire was exposed I brushed it against a micro fiber blanket....and for all you non physics nerds; the blanket was very static-y and therefore negativly charged, when it touched the exposed wire on my head phones some of the electron's escaped into the headphone cord... but once they were in they couldn't get out until they reached my body (our bodies are able to conduct electricity... that is known as being a conductor) and shocked my ear.

So yeah... freak accidents, they make for great stories;-)

The Future....

So I've been thinking a lot about my future.... what I'm doing after I graduate and suchness... Here's what I've got so far

College- I'm going

Major- Nursing!=D

Where- Not sure yet=/

But as with the rest of life I can't just leave diabetes out of my decision.... because that would be un smart (is that a word?) so today my mom and I are visiting a college that I really like, but it's five hours away. That would mean really doing all this stuff on my own, not leaning on my mom. I know I can do it, honestly I'm doing it already, but while the idea of being on my own excites me, it also terrifies me=(