Ramblings on writings

Lately, I've been thinking a lot about what my passion is. When I say "passion" I mean that one thing that I am always thinking about, drawn to, wishing I was doing, my inherent talent- not just, "Oh I love potatoes!" (Which I do, but this is beside the point.)

I think my passion is stories, or more to the point, creating them.

I love stories. I love writing them, I love watching them, I love reading them, and I love being immersed in them. Now, I work in a library, which is filled with stories, but I'm not exactly passionate about curating stories. Sharing them is better, and I do a lot of that in my line of work, but I think my real passion- the thing that drives me- lies in creating them. This is something that I don't do much of anymore, either in my daily work or on my off time.

I used to write all the time. If I was at home I was on my computer, music playing, my fingers attacking the keyboard as I tried to get all the words in my head out into coherent sentences. I have a back log of tales that I've created, some of them pretty good and others in need of a thorough edit, but I also have a folder on my computer of stories in progress and they don't just complete themselves. I can't seem to complete them either. The closest thing I've got going for me in regards to my passion is this blog, which is kind of just stories about me and sometimes my dog but is more often me ranting about things that probably aren't important to anyone other than me. It's not very creatively fulfilling if I'm honest, but it's better than nothing.

For those of you unfamiliar with my lone published work, Rosabel, it's a story about a girl pirate. It actually started the same way the song "Yesterday" by The Beatles did- I had a dream. And when I woke up the scene that I had dreamt was so good I jotted it down. Then I started to write. And write, And all I did when I wasn't writing was think about the characters, and where they were going and where they had come from. In the end the scene I dreamed wasn't even in the finished book but the book was finished.

Was it the next Adventures of Huckleberry Finn? No. But I'm still proud of it, and I can say that I've published a book. I cannot, however, say I did it for the money because it's cost more than I'll ever make on it! Still, I felt really creatively fulfilled with that story.

Then my friends started to clamor for a sequel and the well of inspiration dried up like an old prune.

The thing is, I think I write best when I don't have to go after inspiration. It's like the story writes itself. I'm also a lot better at writing dialogue than I am descriptions, which I attribute to reading and studying a lot of Hemingway when I was in high school and college. (If the description of the table does nothing to move the plot along then please don't give me paragraphs telling me about the nails and the screws and the type of wood used to build it. It's a table. I got it. Let's move on.) 

I also have a problem with editing...as in I think I may be addicted to it. I'll sit down with the purpose of writing and then spend an hour going over what I wrote two years ago and changing three words and adding or subtracting a comma or two. Even this blog isn't immune. I edited the second sentence in this paragraph twice before I even got to this one (and I just edited this one, too.) Blame that on being a perfectionist, I guess. 

I've thought about really writing a book about growing up with diabetes. I actually have a NaNoWriMo (National Novel Writing Month) story that I've been working on for several Novembers now that I think would be a really great book if I could just finish it. Some of what I've written I think is pretty good, some is just snippets of larger scenes to come, and some is just something something, something happens here place holders so I can keep some kind of a time line going. In short, it's a mess. I know what it's like to grow up with diabetes. I should be able to pound that story out. But for some reason I just can't seem to get it to gel. Maybe it's because it's been a while since I was a teenager, or maybe it's because I'm not sure I like the development of some of the characters and changing them would mean changing entire plot points. Whatever the reason it isn't getting done and I think I only added 1000 words to it last November because I got too bogged down in editing what I'd written the year before.

So where do I go from here with this? I honestly don't know. I'm afraid if I force myself to sit down and write then the joy I find in it will be squashed and it will feel like work, which is the last thing I want to happen. Would I like to be able to make writing a career? Of course I would. But as I mentioned earlier I work in a library. I know how many writers there are. I also know how hard it is to get a book deal, or get something published, and how expensive it is to publish things yourself. I also know that sometimes the things that need to be written (for example, books about kids with diabetes that don't harp on the diabetes thing and show them as normal and capable individuals) need to be written by someone, and I really don't want that person to be Lurlene McDaniel.

I guess maybe it's time to invest in a club.

New...and not so new

I don't particularly go for the "new year" stuff. I mean, technically it's just another day and the whole "new year" thing is an arbitrary date decided on by people hundreds of years ago. The whole reason we have April Fools' Day is that some people didn't think starting the new year in the middle of winter was a great idea so they stuck with celebrating it in the spring- you know, when everything in nature renews. You know, technically that makes a lot more sense when you think about it. Who's really the fool?

When I was a kid staying up until midnight on New Year's Eve was exciting- kind of like watching SNL was. Now staying up until midnight is still like SNL...meh. It was better when I was a kid. It's particularly not that great when The Toddler wakes up at 1 am and you just finally fell asleep.

The last time I made a new year's resolution I kept it. The resolution was to not make any more new year's resolutions. They really set people up for failure, don't they? And it doesn't really matter what time of the year you make them, either. Take, for example, my last trip to the endo, which was in November. My cholesterol was up- significantly. My HbA1C was in the mid 7's and up from the visit I'd had over the summer. My doctor was not impressed to say the least, and threatened to put me on cholesterol meds if I didn't start exercising and eating better. So I "resolved" to do that.

Um, riiiiight.

Thanksgiving...Christmas...New Year's...we're talking holiday binge time and I'm supposed to be taking better care of myself? I figured okay, I'll do five minutes on the stationary bike a day and try to avoid things like cheese and red meat until after the holidays and then kick things into high gear...

Sounds like a fairy tale to me...

Fact is, I'm just lazy and didn't want to do it, and it's 10:15 am on the first day of 2016 and my stationary bike is still covered in dust from 2014. And my eating habits have not been even remotely stellar. I had cookies for lunch yesterday. Worse still...I caught myself doing it again.

There are some things that can happen to a person subconsciously, and one of those things is "bad habits." Bad habits are easy to pick up and not easy to get rid of, and even when you think you've kicked them they can still creep up on you. In my case, my bad habit is not giving insulin purposely so that what I eat doesn't stick to my hips. It's a habit I had a long time ago and thought I had kicked a long time ago. There's even a catchy name for it: diabulimia. 

I noticed in November that I was eating poorly, sitting a lot, and still not gaining weight. I was actually losing a little. And then I realized I hadn't been changing my pump setting as often as I should have been. And while math isn't my best subject, I added two and two and got four pretty quickly. I actually caught myself justifying in my head skipping a bolus so I wouldn't have to feel guilty over that third slice of pizza one night. That was a wake up call.

There was a reason I was rail thin in high school and looked like I was a stick- I was a stick. A stick that didn't give herself insulin so that donut she had for breakfast wouldn't stick around long enough to give her curves- or, God forbid, more stretch marks (thanks for those, puberty). Seriously. I couldn't even fill out my prom dress because there wasn't enough meat on me to do it. Look:

I was also decades ahead of the vampire look. Take that, Bella.

This is an improvement over the year before, by the way. My homecoming picture makes me look like I'd never eaten anything and my hair was literally twice the size of my body (it was the 90's, shut up). I'm a little surprised no one ever said anything to me, but then again, why would they? They saw me eat all the time!

Kate Moss is famously quoted as saying this:

She has apparently never had a cupcake, or a milkshake, or mashed potatoes. I can't imagine skinny feeling good because even when I was skinny I felt awful. Jesus, my HbA1c at the time was 13! Do you know what that means? I had sludge running through my veins instead of blood. I was cranky and tired most of the time. And I still didn't think I was skinny enough. I was 5'11" and wearing a size 10!

The scary thing is, though, that part of me wishes I was still a 10. I look at that prom picture up there and think, Damn. Why can't I be that skinny anymore? And that's a dangerous thought because while I could stand to lose a few pounds I certainly don't need to lose three dress sizes. I mean, honestly, right now my chest would not fit in that dress even if the rest of me did because since that time I've acquired curves in mostly the right places, and I'm pretty fond of my curves. Mostly.

So skinny is not a good thought right now, or ever. Healthy, on the other hand, is. So thinking healthy means that instead of sitting here blogging all day, I'm going to get up off my curvy rear and go chase the Toddler around while he laughs and I start huffing and puffing trying to keep up with him. I'm going to make sure I bolus for everything I eat, and I am going to lean toward making healthier choices for meals and snacks.

And hopefully this time next year my only "resolution" will be to keep the good habits I've established this year.

A few words for care givers

We see you.

We see you struggle to act like everything is okay when deep inside you're worried about whether we took our meds on time, or at all. You cook, and clean, and regulate kids and pets, and fix computers and pay bills and run the house as well as hold down a full time job so we are sure to have enough insurance to pay for those meds we sometimes forget to take.  You encourage us when you feel like the world is on your shoulders and you just want to get out from under it. You smile when you want to cry because you know it makes it easier for us.

We see you fight against resentment that you have to do everything, and anger that we're in this situation, and we see you drown in frustration only to shake it off and give out hugs and make sure lunch is packed. We see you roll your eyes when we snap at you for trying to make us take care of ourselves. We see that you're scared because you don't know how long you can keep doing this and you know you may have to do it forever because this stupid disease isn't going anywhere anytime soon.

We see you deal with guilt because sometimes you do feel resentful, particularly when we're being obstinate. We see you deal with self-doubt. You wonder if you're doing enough. You want to ask for help but don't know how, or who to ask. We aren't getting better and you take that personally, as if it's something you have control over even though you know you don't.

We see you feel alone. You're taking care of us, and we don't feel well enough to go out the way we'd like. When you do go out with friends and leave us at home we know you're wondering if we're okay. Did we remember to check our blood sugar? Take our heart medication? Or worse, did we accidentally take those two meds together that we're not supposed to and now we've passed out on the kitchen floor? Maybe it's better to stay in after all.

We see it, and we don't say thank you enough, so thank you. Thank you for being the one we lean on when our disease gets the upper hand. Thank you for staying with us even when we're difficult and take our own fear and frustration out on you. Thank you for taking care of us when you could leave. Thank you for not putting yourself first instead- which you should do sometimes.

We love you. We appreciate you. And we wouldn't be here without you.

November is National Diabetes Awareness Month, but it's also National Family Caregivers Month, and while that seems to indicate caring for the elderly I call BS. My husband takes care of me, and he worries about all of those things because of my diabetes. If my sensor isn't working right at night he's worried I won't wake up. He worries about my A1C. He gets me juice when I snap at him because chances are my blood sugar is 52. And I appreciate him for doing it, and I know it isn't easy.

So here's to the people who take care of us, whether we are elderly and need a hand, or have some chronic disease that needs to be monitored, or we have something else that means we need the extra support. You're our heroes.

Back on the wagon...again

Why can't I just stay on this damn thing? Getting back on it is hard.

I got a Garmin step thingy for Christmas, and I used it pretty regularly for a while. I stopped using it over the summer for two reasons. First, I tended to hit about 6500 steps a day  regardless of what day it was or what I was doing and I didn't need a reminder that I wasn't making that 10K goal and second, it's hot in the summer and wearing a plastic wristband is uncomfortable enough without adding summer sweat and a wrist band tan to that.

But it's "fall" now (pumpkin everything means fall even if it's still 95 degrees outside), and I do need to get my A1c down, so I strapped it back on and connected it to My Fitness Pal, and as of today I am trying to get back on the fitness wagon. Counting steps, counting calories, counting the days until my designated cheater day...

Why???

I don't want to be overweight. I'd like to not go blind. I would appreciate having the energy to chase an 18 month old around and not have to stop and take a breath or a break all the time. I'd really like to feel good and feel good about myself.

That's really the deeper reason. I've been kind of depressed lately. My pants feel too tight, and not in a  good way. I have no control over the whiny diabetic dog, or the in-pain husband, or the foster situation. I have a little more control over things at work, but even there I'm bound by rules and a boss and an administration that's still in the middle of constructing our strategic plan. The one thing I do have control over is myself, and lately I've let myself get out of control.

Time to stop that crap.

I miss carbs. Do breaded vegetables count?

I'm starting off small...fifteen minutes of stationary bike riding three times a week is small. Trying to make sure I hit 7K steps a day is small. Trying to stay close to my allotted caloric intake and not hating myself for going over it is not as small, but still smaller than expecting perfection right out the gate. I'm on day one of this and so far I've done well. Maybe I'll let next Sunday be my cheater day. We shall see how well I do this week... and this week I'm off several days for varied reasons so it will not be a regular week against which to measure things, which is good, because it's days when I'm home that I'm less likely to get off my butt and more likely to be doing things like this

At least my right index finer is getting exercise.

The thing is, now I've got to be watching my blood sugars more than ever because one fifteen minute stint on the bike will give me a day of lows. Could I alter my basal rates to compensate? Sure, if I had a habit of exercising going. But I don't yet- YET- so I don't want to go in and make adjustments until I'm at a level where I know I'll need them all the time. Which means I'll need to constantly monitor my sensor readings else I'll be imbibing so much regular Coke to keep from passing out that all the exercise will be mute. 

Frustration level: Fax Machine.

But since the diabetes is part of the reason I need to do this, I need to do this. And I know I've said I need to do this many times in the past, and those times have not gone so well. The nice thing is that I can keep trying and hope that eventually I'll get myself in some good habits. So here we go again.

Or, to paraphrase the words of Joey McIntyre, heeeeeere weeeeeeee goooooo agaaaain...I'm a gal on a mission, baby,

I'm lookin' at YOU, 5.9

Sense and Sensorability

Heads up- this might be a good blog to skip if you're squeamish.

I've been using this new Medtronic Enlite pump now for...well, I'm done looking through old blog posts trying to figure it out. It's been a year at least. And I haven't been complaining about it much.

Charles and Eddie, "Would I Lie to You"

If you recognize this song, congratulations. You made it out of the 1990's.

Okay, so I complain about it. But I usually only complain about the incessant, unwavering, unrelenting beeping it does. What I don't complain about is how hard it is to put the sensors in because unlike the Enlite's predecessor, the Revel, it wasn't designed by Torquemada to convince Jews to convert. It's a fairly simple device to insert and I've become pretty good at putting the sensors in. Not only that, they actually last the six days that Medtronic touts, also unlike the Revel, which means I'm sticking myself less than I could be.

I've got the whole thing down to a fail-proof system, actually. Sunday I put in a new sensor. By Monday afternoon it's pluggin' away and pretty damn accurate (something else the Revel wasn't!) Saturday morning it shuts off and I charge the transmitter that sends the blood glucose readings to my pump so that it's ready to be put back on Sunday morning. Easy peasy!

Well, yeah...usually. Very rarely they go in wrong...

My stomach bent that wire-needle combination there, and it was in my stomach when I was trying to pull the needle out. Sucker was so bent it wasn't budging. The needle would only come part way out so I had to waste the whole sensor. When I pulled it out it didn't hurt, but I was kind of queasy for a few minutes after tugging on it and not being able to get it to work right. Nothing like having a bent needle stuck in your stomach to really set your day off on a good note. /sarcasm

I actually have more trouble with the insulin infusion sets, to be honest. They go in wrong all the time, and I'm left with bruises on occasion, too. And I'd love it if I only had to change those every six days instead of every 3-4. And sometimes I'll hit a spot in just the wrong way and I'll start to bleed, and I'm both completely grossed out and fascinated by it. 

No wonder I was having trouble getting insulin to go in- the tube was clogged!

But I digress. I was talking about the sensors.

Frankly, the fact that my hemoglobin A1c jumped from 6.8 to 7.3 in four months is probably an indication of two things- having a toddler makes me too tired to exercise and being annoyed with my noisy sensor to the point of silencing it for hours at a time is not a good thing. I really like sleep, though, and I get more of it when I'm not waking up every two hours to acknowledge that my blood sugar is either possibly maybe going to hit 170 or possibly maybe going to drop to 80. But getting a good night's sleep is no excuse for this kind of thing:

4:34 pm. Not the middle of the night.

Yeah, that was three hours in the high two hundreds that I should have addressed earlier. (To be fair, those little black marks at the bottom are times I gave myself insulin.) So I won't censor my sensor during the day anymore and I'll try not to complain too much about the incessant, unwavering, unrelenting beeping, because the beeping is what's helping me keep my blood sugars in check which can only be a good thing in the long run.

Also, I've received a request to note that my husband is handsome, and smart, and wise, and modest, but I won't do that because it's pandering to a very small demographic.

Seeing the Unseen

Sounds like a paranormal TV show on one of those cable channels that you can never remember the name of, huh? Seeing the Unseen. I'm not talking about ghosts, though what I am talking about is definitely scarier than things that go bump in the night.

I'm talking about not seeing how sick, tired, in pain, or ill some people are because the thing that makes them sick, tired, in pain and ill isn't obvious. Right now you'd never be able to tell I'm a diabetic because I've got my pump tucked away someplace you'd never see it, even if you were looking for it. I've got no physical deformity that identifies me as someone with whom you must be Americans with Disabilities Act (ADA) compliant.  In fact, many people are generally surprised to learn that I am a diabetic, as if there should have been some kind of obvious, clear-as-day sign that I'm not normal. But man do I feel like crap today.

Wait, doesn't mal mean bad, or something?

My husband suffers from frequent migraines, but he tries very hard to hide his pain from everyone. I work with someone who has fibromyalgia, and to just look at her gives you no indication of how much she often hurts. A very good friend of mine has Lupus, but on her good days you'd never know she is as ill as she is because you just can't see it. There is a long list of  chronic diseases that hide in plain sight, and hide in plain sight so well that many people over look how serious they are.

I've been thinking about this for a while, and I want to be clear that I'm not comparing diabetes, something which I think is fairly livable, to any of these other conditions based on "how much one suffers" with whatever they have.  But the two major similarities between them and other diseases like them are that 1) You can't tell we've got it just by looking at us and 2) Trying to appear normal is exhausting, because believe it or not pretending to be okay can take a lot out of a person.

Creative Commons / Flickr: qjakeTired usually isn't this cute

When I was a kid everyone knew I had diabetes. It was one of the first things everyone in class learned. "Carla has diabetes. If she falls asleep on her desk let the teacher know." I sometimes used it to get attention, and never more than in third grade when my mom got the whole school involved in the Juvenile Diabetes Foundation (now Juvenile Diabetes Research Foundation) annual walk-a-thon. I milked that for weeks. But I was keenly aware even as a child that diabetes made me different. I was the only kindergartner with an alarm clock in class that went off when it was time to eat a snack. I was the only one in my class- the only one in my entire grade- that left class a little early to go check her blood sugar and give herself a shot before lunch. And I was the only one who woke up in the nurse's office at some point during the first couple weeks of school because my blood sugar crashed and I passed out in class.

So eventually I stopped drawing attention to it, because once I hit junior high all I wanted was to be like everyone else. I wanted to eat pizza and drink Coke- not diet Coke. I wanted to eat cookies and not miss the last five minutes of whatever class I had right before lunch. I wanted to ride the bus to school and be allowed to sleep over at my friends' houses without my little sister tagging along "just in case." And I sure as hell didn't want to be a human pin cushion anymore. I didn't care for being called Diabetes Girl, either.

I spent years having to tell people about my diabetes right after telling them my name, and like I've said before it defined who I was when I was a kid. In spite of disliking the moniker, I was Diabetes Girl. My Sophomore year of high school the debate team signed up to help out at the JDF Walk-a-thon, and I'd kept my familiarity with the whole shebang under wraps. At some point however, one of my team mates found out, and I can still hear him in my head, talking to his mom who was one of the people coordinating the event: "Carla's one of the people we're helping!"

Well, really.

I won't get into my cynical rant on how little I feel people are helped by things like the JDF or JDRF when drug companies are making bank on us sickies and probably suppressing all research that would enable me to lead an Islets of Langerhans filled life without needles. (Besides, I've probably done it before.) The reason that this moment has stuck out in my memory is that it was just a nasty reminder that I was different in a situation where I wanted to be the same, and now people who had looked at me like I was normal now looked at me like I was someone who needed "helped."

But that was all in the past right?

Even if you take people knowing/not knowing I have diabetes out of the equation, there are just days I feel like crap and don't want to let on. I mean, I'll complain sometimes, but there are many days I just plaster a smile on my face and try to ignore the fact that my blood sugar won't go above 65 or below 325 or whatever. And there are days I'll pretend that I don't want to cry every time I give insulin because my setting went in wrong that morning and it hurts like someone stabbed me in the side. And I can't even begin to tell you how many times I've come in to work when I should have stayed home because the pump beeped all night long and I've gotten little to no sleep. What would be the point?

I guess the point is that even now I want to appear normal. And if I'm bone tired at the end of some days, then those who have it worse than me, and have a harder time appearing "normal" every day, have got to be even more bone tired. And that can be frustrating for their families, who actually get to see the pain and fatigue that is carefully shielded from the rest of the world. I had a conversation with my mom recently wherein she was surprised that my husband had been fighting a major migraine for a few days because he'd been over at my parents' house the night before and had seemed fine. He hides his pain from people well, and sometimes I wonder if people think I'm lying when I tell them how much he always hurts. They probably think he's exaggerating when he tells people how tired I am, too, because I spent most of my energy trying to appear healthy when I feel anything but.

I had to scan through a year and a half of Facebook posts to find this, and while diabetes isn't listed, that "etc" covers a lot of ground:

The Care and Keeping of Carla...probably needs to be reevaluated...

Please forgive any spelling errors...I've got a wicked cool new keyboard that I am still getting used to and anyone who tells you they are all set up the same is quite simply wrong.

Mine lights up, for starters...

I know I've probably mentioned this before, but ever since the husband and I started fostering the Baby (whom we must now refer to as the Toddler because oh my lord do they grow up fast), the care and keeping of myself has sort of taken a back seat to everything else.

Bandit needs insulin. Dogs need fed. Husband needs to know where his wallet, phone and keys are. Baby- sorry Toddler- needs changed, and fed, and now one of our other dogs is giving me cause to worry. Before you ask, I've already had her checked for diabetes, and it's not that. I'm a boss at work (which I suppose could be taken more than one way and is true basically no matter how you interpret that, haha) so I've got work plans and staff issues and projects and other things that I deal with on a daily basis. 

Now, I know that all of this stuff is important but there is plenty of time in the day to make sure I eat, and check my blood sugar if needed, and I can take a few minutes during the day to make sure I'm alright. Usually I do. It's the bigger stuff I seem to be ignoring.

Nothing to see here...move along.

Fact of the matter is, I need to make an eye appointment because I'm over due and I know I need new glasses. I have trouble seeing with the ones I have sometimes because I opted to get new sunglasses last year and used up my insurance on that. (New frames every two years, new lenses ever year as long as they have no "additions" like, oh, I don't know...UV protection. Great plan. It's almost like not having one at all.) I also should probably go see that retina specialist again to make sure my diabetic retinopathy isn't worse.

I have an appointment next week to get an ultra sound and another thing done, and rather than give TMI I'll just say it's not on my thyroid...though now that I'm thinking about it I was supposed to get that ultra-sounded before my next endocrinologist appointment. I think. They never called and I don't even remember the last time I was at the endo, so at this point maybe I'll just forget it again. 

Also, my throat is sore but if you think I'm staying home from work tomorrow because of it you don't know me very well. For one thing, story time doesn't do itself, and for another, a little Aleve and some Halls Defense and I'll be fine.

No no no. We're not there yet.

Maybe these aren't really BIG things, but they are a few larger than average things that have started to add up, and between Toddler's birth parent visits on our weekends and the fact that I hate to take off of work for any reason if I can schedule something on a day I don't work, my free time is pretty booked already. Plus, I don't want to spend one of the days I have off to spend with the Toddler sitting in a doctor's office...now, sitting in a Doctor's TARDIS would be something completely different. Then I'd have all the time in the universe.

But I don't. So grocery shopping, cleaning, laundry, and whatever else comes up usually take precedence over calling my endocrinologist to get that ultra sound on my thyroid done (which I don't think needs to be done because it's been done before and nothing at all in my blood work or how I feel or anything has changed since he did it umpteen years ago.  It's just he has a new Physician's Assistant who won't take my word or my file's word for it. I don't want to go take some expensive health tests that don't need to be done, and will probably cost me money, and will definitely cost me time, and get off my lawn.)

A heroine of children's literature.

Eventually I will get around to dealing with all of this and I'm sure all will be fine. I just need to take a moment or two out of my lunch or on a break and call to make whatever appointments I can, and then schedule out over a few weeks so I don't overbook myself. And I will get each thing on my list taken care of...except maybe that thyroid ultra sound. That's dumb.