"Call! Don't Fall!"

I used to be really, really into television. I was one of those textbook warning label kids- if you turned it on, I just- got lost in it. For awhile it didn't really matter what it was. The t.v. turned on when I got home and turned off when I went to bed throughout a significant part of my elementary, middle, and high school years.
Yes, it ate my life- hours at a time devoured in a haze of different shows, reruns and food commercials- or, if you watched USA or Lifetime, just commercials for shows that would be on later. There were several shows that I had probably seen every single episode of- and not out of conscious planning, either. More from sheer volume of hours watched.
Eventually, life took turns that pulled me away from the ready availability of high quality cable packages, though, and while the internet did it's damnedest to fill the void, it never quite succeeded.

Don't get me wrong- I still enjoy my Netflix- there are always shows or movies which I could watch over and over and never get tired- they're my comfort on a bad day, old friends which never fail to distract me when I'm feeling down. There's nothing like Firefly playing in the background as I fiddle with commission or practice or just focus on expanding my inventory, and no one can snap me out of a low spoon craptastic feeling day where things are going wrong physically and mentally on multiple levels quite like Robin Williams, Russel Brand, Christopher Titus, Lewis Black, and Hal Sparks in their various stand up routines.
With the exception of a few, I'm a homebody about what I watch. I like what I like, and stick to it.

I find it curious- and inconvenient- that now that this stupid accident has occurred, I find myself with hours upon hours of nothing to do, full access to my Netflix, Hulu, and Amazon accounts- even a t.v. set up at the foot of the bed in my room- and no desire to watch anything, at all.

And when I say hours, folks, I mean HOURS of downtime. I've just transferred to rehab and my busy schedule today consisted of evaluation and a total of two hours of therapeutic activities. I seriously am up and about to pee more often than to do- anything else. They get us up here early, too, considering how little there is to do.

I was woken up around 7:30 with a woman persistently searching to mug me and take the red stuff I keep in my veins.
Getting situated in my walker, I was led on a supervised pilgrimage to the bathroom, hopping awkwardly in my stylish hospital gown, standard issue yellow grippy socks, and, of course, the staple of my ensemble- the giant bulky cast/post surgical dressing nightmare which encompasses the entirety of my right leg, from upper mid thigh to my foot.

For those of you who've never been to post-surgical rehab, I'm here to tell you, they treat you a lot like a newborn. I mean, it makes sense- after all, if you end up here, chances are great that you can't walk, don't know how to do anything in your new state (whatever that may be), and are generally helpless. You're also usually on a LOT of pain medication, so chances are great you're a bit off as far as common sense and decision making.
So, they never let you do anything alone. You are not allowed to stand up, walk, hobble, roll- anywhere by yourself. The first thing you see when you look on the giant progress white board across from your bed here is a red band sign with white letters; it reads "We care about your health and safety, CALL! DON'T FALL!"
Your bed has a weight alarm.
Your wheelchair has a weight alarm.
I'm pretty sure that if it were possible or would help them keep at least one person from doing something stupid with a walker, they'd have a weight alarm on them.

I realized how absolutely helpless the default setting was here when the nurse/staff member who was my welcome wagon assisted me into getting into the restroom- then realized that my newly operated on leg would be hanging with no support while I did my business, so he popped back in and placed my leg on an empty trashcan for my comfort without even looking at me or thinking twice about it, before closing the door and letting me know he was there when I was done and needed to get up.
Which took me an extra moment of mental adjustment because, frankly, I'd been peeing the whole time as he did that, and all of my blood had migrated to my face.

Or maybe I realized it when one of the morning nurses volunteered to cut my casserole for me...

But, I'm rambling.
On my first eventful day, I got up, proved I knew how to use a walker, proved I knew how to use a wheelchair, checked in with a doctor, was given medication, was fed three square meals (ish), and did about two hours of therapy- partially light exercise (lifting a very light weight over and over before literally batting a balloon back and forth for 3 minutes or so with another patient), and the other part trying to clean myself up without being able to shower and having a PT stand there awkwardly while I proved I could brush my teeth.
The rest of the time I was in my hospital bed.
With no way to play online games with my gamer people.
No books to read.
Noone to talk to (even if there were some people, the fact is I was in a royally bad mood- the special, rare kind you really need to keep to yourself unless you know your relationship can withstand anything).
And no desire, at all, to watch anything.
I'm going to have to find some way to fill this time- something I can do while on the totally completely necessary painkillers which are part of my routine. That (along with the whole hopping thing and lack of supplies) really limits my options...
No answers yet, but hopefully I'll think of something soon.

I'm really scratching my head on this one...

One Foot Wrong: The Pop That's Changing Everything.

I knew as soon as my foot hit the ground that something had gone wrong; I felt- in fact, I swear I even heard, a popping noise, felt something go bad around my right knee, before agony enveloped me and I fell to the ground, rotating so that knee wouldn't take the hit.

Outwardly, I screamed, lying there, grasping at my leg in the intense, gentle and cautious way you do when you know you've seriously messed yourself up, but are afraid that touching it will make it worse.
"That's not right," I remember exclaiming between the stream of profanity as my mind raced to process all the signals my body was sending me, the internal damage assessment. "That's wrong- that shouldn't be like that."

Facedown on the cool floor of the parking garage, I waited, trying to breathe, for the ambulance my friends called to come.

They checked my leg for telltale signs that usually show up in a break almost immediately- mainly, swelling and bruising- but neither were there. Still, when they moved my leg, I shouted out.
Even as I struggled with the pain, I scolded myself for the reaction- after all, all I'd done was stepped off a curb. My foot had landed normally, more or less- just the position of my knee was wonky (poor timing, bad judgement as far as the height of the curb); it had locked straight when it should have been bending. It was a move I'd made before and, while uncomfortable, had never resulted in damage. So, I figured, I couldn't have done anything too serious. Perhaps I tore something, perhaps I tweaked a nerve or- popped my knee partially out and back in wrong. I don't have a lot of knowledge as far as the anatomy of my limbs, but I was mad at myself because I kept thinking 'You couldn't have done anything that bad, and yet here you are, handling what seriously isn't even the worst pain you've experienced so poorly. You're being a wimp about this. Get a hold of yourself. Calm down.'

The paramedics gently and carefully loaded me into the ambulance and set off. Every time my leg jolted or moved, it continued to send signals- not just of pain, but of wrongness. Things weren't moving together as they should be. There was a sense that one part was moving out of sync with everything else. It was an extremely disconcerting feeling.

That was two days ago, and now I know that that feeling probably means that something is actually broken.
When I had stepped off that curb, the pop I felt/heard had been me fracturing the tibia of my right leg. Not a standard fracture, either. It's called a compression fracture, and it basically means that my bone broke- but also kind of crunched inwards on itself.

Because of the type of fracture, I'm going to need surgery. More specifically, I'm going to have at least 1 metal plate and a few screws put into my leg. It's possible that I will need a plate on either side. From what I understand, the surgeon won't know precisely until he opens me up.

So basically, I stepped off of a curb- that's literally all - and managed to break myself in such a way that I'll actually need reconstructive surgery that will add hardware to me which will be there for the rest of my life. I stepped off of a curb, and ensured that for the next six months, my life will stop.
I won't be able to have a job that requires any regular commitment.
I won't be able to even put weight on my leg for the first 3 weeks, at least.
It will be 6 months before I will be able to walk without a cane again.
I won't be able to have classes.
I can't finally learn to drive.
I can't go many places.
I won't be able to spend any real time without my leg elevated.

I'm trying really really hard to find a good outcome, but it's still early and all pretty overwhelming. But sitting here in my hospital bed in this sweltering room, I have little else to do but think...So this is probably far from the last post on this topic.

It's a big change; a huge change, a kick in the teeth when there's already so much to fight.

But I guess for now, I'll just have to see what happens next.
I have a feeling that my posts aren't going to be particularly well written over the next few weeks...So, sorry, reader, if you are out there, but as always, feel free to stay if you'd like.

It doesn't have to be a groundbreaking post..

I just got back from a vacation.

Things I want to do:
- Make a cool digital photo album
- Make a new meal plan
- Game
- Write
- Rest lazily in bed with Lucy curled up next to me.

Things I need to do:
- Laundry
- Get prescription filled
- Packing for convention (which starts tomorrow)
- Ironing out details for same

Unfortunately, these past few weeks have drained me- moreso than I anticipated.

From the time we got onto the first train on our journey, it was clear that the trip was going to be stressful.

But after four days on two trains, a fullscale eczema flare, several dollars in quarters spent at hotel laundry machines just to prevent said flare from getting worse, and a trip to a local urgent care to re-up my steroid dose, I have to admit that my patience, along with my supply of social niceties, has run incredibly thin.

Frankly put, I'm tired, stressed, fed up and feeling mean as a snake. I'm suffering from a terminal shortage of spoons, and clinging desperately to control of my bad emotions.

I'm just hoping to make it through this without making an ass of myself or saying something unforgivable....

Here goes. But first, a nap.

Third time's the charm?

 place a funnel into one of the empty quart sized water bottles, then crack the seal of the Miralax.
"14 doses..." I say to myself; one dose equals one cap full, so 7 cap fulls equals half the bottle. An amateur chemist, I ever so carefully measure out seven caps of the white powder, pouring each into the funnel where it hisses into the bottle like fine sand.

I repeat the process with the second bottle; no measuring required now. I tap the funnel to clear it, then crack open the 32 ounce bottle of blue Powerade; it's still cool from the store, but that won't matter. I measure sixteen ounces into the white plastic measuring cup next to me, then carefully pour that into the funnel. I tap the funnel to clear it, place it in the second bottle, and pour in the rest; the blue sinks into the white powder as I quickly screw the lids on both before taking one in each hand. I shake them vigorously, ignoring the twinge of protest in my already sensitive stomach. I peer into the bottle at the results and frown- it's mixed, but the powder hasn't dissolved fully. I shake the bottles again as I think about my options: I can suck it up and drink the 32 ounces of thick, gritty liquid, or I can add another cup of Powerade overall, which, while it may slightly decrease the level of unpleasantness, will draw out the process longer.
Still, I grimace at the prospect of adding 'gritty' to the traits of this already disgusting mixture. There's really no contest. I add half a cup to each bottle, shaking them again, and look inside.
"That's...better." I mutter, pursing my lips. It'll have to do.

I place the bottles in the refrigerator and blow out a sigh, hoping they'll have enough time to chill before I have to start my prep.

Technically, though, this is the second prep I'll be doing in as many days. Yesterday, I sat down with a giant jug of something called GoLYTELY with instructions to drink 8 ounces every 5-10 minutes over four hours, until the jug was empty. I set a timer for 2 minutes on my phone and rented the first three Jurassic Park movies, hoping that rampaging dinosaurs chasing terrified paleontologists would distract me from what I was drinking. For the first four or five glasses, it almost worked. By then, it'd been about an hour; my stomach was starting to feel full. By the eighth glass I was having a significant amount of trouble; it wasn't just the taste- though that, itself, was unpleasant- it was the texture, thick and smooth, coating my mouth and tongue every time I drank it. I pushed back the timer to 2 1/2 minutes between each gulp. Each time, when I was done I had to press my hand to my mouth, my eyes squeezing shut as I breathed deep through my nose and concentrated on not being sick. I ended up having to take breaks between 'doses', trying to get as much as I could at a time into my system.

But there was another problem. According to the prep instructions, I would have my first movement an hour after my first 'dose' of the GoLYTELY. Two hours went by, and nothing had happened.

I carried on as best I could. By 8:30, I'd finished half of the solution, and still hadn't made any progress. Feeling sick to my stomach, I resigned myself to contacting the on call GI at my doctor's. I made the call, feeling embarrassed as I explained to two different people why I needed to reach the GI, and it couldn't wait until morning. I gave my call back number, was told that the doctor would be paged and I'd hear back in around a half an hour. In the meantime, I tried to drink more of the mixture, getting up and walking around.
Finally, I heard from the on call GI.
"So you haven't had a single bowel movement?" he asked
"No, not anything." I said, feeling myself blush and rolling my eyes at myself.
He confirmed what I'd feared - that they wouldn't be able to go through with the procedure.
"You're absolutely right in that we will not be able to get clear information at this point." he said.

I silently groaned and dropped my forehead to the cool surface of my desk. Of course not. This was the third time I'd been unable to have the procedure because my prep had failed to work. Lovely, I thought, already dreading having to call and reschedule, listening to the appointments nurse sigh as she went through her system. Then, starting the prep all over again..

"Do you think you would be willing to continue with the prep tomorrow?" the GI's voice cut through my reverie. I lifted my head.

"Um...yes, I think I could do that." I said.

"Because if you could stay on the clear liquid diet, tomorrow you can start the prep again and then have the procedure on Thursday." he said.

"Yes, I can absolutely do that." I assured him.

And that leads to this afternoon, right now, as I prepare the- thankfully different- prep, trying not to think of the evening ahead of me, and hoping that the Powerade, at least, won't be as bad.

The 'What Do' of Changing How You Eat: (Smeeps Crosspost)

For better or for worse, I actually have another blog running side by side (as it were) with this one. It's called Scribbles and Meeps, and it's a less structured blog- I use it kind of as a way to get ideas, questions and general thought processes out of my crowded brain. Indirectly, I use Scribbles and Meeps (Smeeps? Yea, alright)to explore my lack of knowledge on a subject, or to air the questions I have about life in general to the internet world, whether people actually look at it or not.

For awhile now, I've been trying to plan my food for the week ahead of time, and do shopping and cooking and all that jazz.
I have, for the most part, been unsuccessful. Today, on that theme, I found myself writing a post about the difficulties of changing the way you approach food when you frankly have no idea what the hell you're talking about. It occurred to me that this post - surprise- is health related! So, I figure this is a great time to exercise my right to cross post.

The post can be found here.

You want a quote? Well, I thought you'd never ask!

"I, like many people in the world, eat too much junk. I eat out too much, and my food choices need a serious overhaul- I know this. I am aware of it every damn time my stomach gets mad at me after a bad choice, or when my mental energy is shot, or I'm hungry even though I JUST had a really heavy (and probably fattening) 'meal' not an hour and a half ago.

The thing is, I desperately want to change that, in the moments of clarity in the storm of chaos that encompasses life management when you have chronic health issues and a generally 'work in progress' life, I dream of healthier food choices and how they'd change things."

Laziness, Self Doubt and a Loong Metaphor

Let's talk about laziness.

More to the point, let's talk about why people without chronic illness need to keep that word to themselves.

It's an annoying fact that, when you deal with chronic illness, sometimes you just need to take time to do Nothing.

Well, not necessarily nothing, but there are definitely days when I, personally, need to just not move. Sometimes, I need to take some quiet time for myself. These times aren't just therapeutic luxury for me- they're essential. Whether I like it or not, whether I want to or not, I need these times. To heal. To recharge. To find my spoons or count how many I have left.

To be honest, I really hate being the type of person who needs that. To be totally honest, I still struggle with fully accepting it, often to my detriment. It's annoying and inconvenient and you know what? It makes me feel terrible. That last part, though, isn't just my inner healthy person screaming at me to get up and go, go, go. The embarrassment, frustration and feelings of inadequacy as a human being aren't conjured from nowhere.
They exist because, for as long as I can remember, someone in my life has informed me that my behavior is just laziness.

"You're unfocused." they've said,
"You need to realize that life isn't a game."
"You're being irresponsible."
"Get motivated! You can't just hide when things get rough. Be realistic."
"You need to work harder. You aren't putting in enough effort. You aren't getting anywhere. "
"Grow a thicker skin."

Someone in my immediate family put it the most eloquently, though, a few years ago:
"Why don't you actually get up off your fat, lazy, ass and DO something useful?!" she snarled, "You're pathetic, you're such a brat!"

So this is an open letter to anyone who's ever thought (or said) anything like the quotes I just listed:

First of all, you're idiots.
I don't say this with any particular malice- (okay, maybe a teensy bit with that last one; I'm a bit upset with you after all) because we've all been idiots once or twice over the course of our lives so far. But in this case, you need to not be idiots anymore, because every time you open your mouths to say any of that stuff, you're probably hurting someone.
I'll help! There's something you need to know.

Chances are great that we already fight with ourselves about this stuff- and we aren't gentle. So when you start saying all the things you say, you're just adding to the negative stuff we're already fighting with. You think we haven't heard what you're expressing before? We've said it to ourselves before, probably multiple times!
Here's some of what's gone through my mind, after being down and out for a few days this past week:

I shouldn't need this. Normal people can do so much and never stop. Why can't I be one of them? I'm pathetic. What if this is all I am? What if I can never get past this? How do I get past this? It hurts to move and I'm bleeding and the creams I have to put on my skin burn like fire and I can't stand around because I feel queasy just standing, I feel seasick and my abdomen is so sensitive to touch that even my jeans are too much pressure and make me feel like I have to run to the restroom and the steroids I have to take right now to deal with the pain and itch in my skin and the irritation around my eyes that's so bad I can barely open them in the morning is making my heart (which already beats too fast) race, and it all kept me up all night until I passed out exhausted at 6 a.m. to wake up at 9 to go to an appointment. And I should be able to work through that, I should, I know, but I can't, I can't and I'm so sorry. I'm a failure. I'm so sorry I'm this, I'm so sorry I'm me.

"You're unfocused."
I know. I'm trying. But there's so much going on already.
"You need to realize that life isn't a game."
I know it's not a game. This isn't fun for me. I swear I'm not choosing to be this way.
"You're being irresponsible. Get it together."
It's as together as I can get it- I'm trying but I can't do any better than this right now.
"Get motivated! You can't just hide when things get rough. Be realistic."
I'm not hiding! Things were already rough- I used my motivation to get out of the house this morning.
"You need to work harder. You aren't putting in enough effort. You aren't getting anywhere."
...I know I'm not. I know I do. I'm sorry I'm not doing well. I can't make improvements right now- I'm too tired from doing maintenance.
"Grow a thicker skin."
How?!

"Why don't you actually get up off your fat, lazy, ass and DO something useful?!"

I...can't. I did.
I'm disgusting. I'm not useless!...
What if I am?

"You're pathetic, you're such a brat!"

No...I try..I do.. I...
But maybe it's not enough.
Maybe you're right.
I am pathetic.

----

Imagine our lives are a trek across the whole freaking world.

You come up alongside me and casually glance at me. I seem about the same age as you. Same height. We obviously started in the same general part of the world. I look okay, health-wise. I've got a medium sized pack on my back and I'm carrying something- it looks like a super lightweight jacket or cloak- slung over my arm. I've got comfy looking footwear, and seem well equipped, and well fed (I'm obviously getting a good amount of food from somewhere).

You are carrying a large pack. One of the straps is worn so it rubs your right shoulder. Your footwear isn't as nice- it doesn't keep out the rain and there's less arch support. You've been unlucky in trading or hunting for awhile, so you're somewhat underfed. You are really hungry.

But you're making steady progress and have been all day- all week, in fact. It's what you do. You keep moving forward. You keep a good, steady pace.

You see that my pace is slower than yours. Before too long, I stop and sit by a tree. As you pass me, I take out a tiny charcoal and paper and doodle for awhile. Then I get up and seemingly leisurely gather my things before setting off again. By this time, you've crossed another stretch of forest and climbed a hill to reach a small lake, meeting the objective you set for yourself, ahead of schedule, so you decide to watch my progress. It's going to rain, so while you watch me you are also gathering wood to make a shelter for the night.

By the time I get to you, you've started building. I'm out of breath, red in the face, and took two breaks that you saw on my way up.

Looking up at the darkening sky, I set about looking for sticks and branches. I haphazardly form them into an upside down V. They collapse on themselves several times. Seeing this mess unfold before you is too much. You take a moment from digging your protected fire pit to and offer me some precious rope. You don't bring it to me, though. I have to walk over to get it during which my haphazard pile of sticks collapses again.

It still takes forever- partially because I wandered off at one point to sit and scribble on the paper again. In the end, even with the rope, the shelter I build is a sad excuse for cover. It only fits me if I sit, Indian style, curled down slightly, with my pack in my lap, and it certainly won't keep Anything out.

By this time, you have a fire roaring. You are cooking a pheasant that looks like it's starved to death. It starts to rain. I take the thing that was draped over my arm and shake it out, draping it over my little shelter. This takes a few tries. It looks like an old poncho. It seems to do the trick, mostly. I reach into my pack and pull out a big apple. I also pull out a fish wrapped in paper. I offer it to you. You take it and get it cooking.

I eat my apple. Or, I eat three or four bites. They're small and take forever. After those bites, I offer the apple to you. You shake your head and give me a weird look, not moving- why would I offer a partially eaten apple to you?

I shrug, look down at the apple, then take another tiny bite before tossing it away towards the lake.

You look at me, shocked and annoyed beyond reason before heaving yourself up and going out and grabbing the apple off of the grass. You go back under your shelter, muttering to yourself. How could I be so wasteful?! Throwing out perfectly good food? Why don't I know how to do anything right? Why am I so slow? Why am I so lazy?? And who do I think I am, offering you things like you need my charity??

You don't know that I walk slower even though I carry a smaller bag because, not only is my bag heavier than it looks, but I messed up my back when I was little and one side is weaker than the other. I take frequent breaks because I was sick for a long time and have scarring on my lungs and my leg muscles are out of shape. My poncho is heavier than it looks and made of something I'm allergic to but it's all I've got to keep out the rain. I acquired the fish in exchange for one of three apples I was lucky enough to find, but I'm not great at making fire- or cooking meat- so after you gave me rope, I repaid you with the fish as a thank you.
And as for the apple, I couldn't eat much of it because it was too hard for my teeth. I offered it to you before I threw it away because apples are hard to come by, and it was a shame to let one go to waste. Also, I may have seen the way you looked at it when I first took it out.
Noone ever taught me how to make a shelter, and I'm fortunately not meeting the people I'm looking for for four more days somewhere that is only a few miles from where we are.

I don't know about your shoes, or that your pack is super heavy and you're dealing with it, but you dislocated your shoulder awhile back and it's still really uncomfortable to carry that weight. The dull pain soreness from the bad sprained ankle you got the same day you messed up your shoulder doesn't help matters. Still, you do it, because you have to, but by the time you set up camp you are hard pressed to move anything if you don't have to.
I don't know that you are normally a great hunter,  but since you messed up your shoulder and qnkle you've been struggling to find food, since you aren't great at gathering. I don't know how offensive it is to you to be perceived as weak.
You've been this route before, and you've got to meet someone in three days time so you're on a schedule.

The difference between us is that I'm aware that I don't know your story, or what motivates you deep down. I don't know anything about you other than what I've seen, and I know what I've seen isn't nearly enough for me to formulate any opinion about the type of person you are or judge you.

You, though, seem very, very sure that you know everything there is to know about who I am.

And the World Turns Over - A Step Forward and a Kick in the Pants

A New Year and a new start, and all that jazz. Have barely been able to get up and around for the past few weeks, thanks to new stomach and intestinal troubles (hooray).

This post is partially aimed at members of a community I've become somewhat active in. Since they may happen by, looking for an explanation I promised:

HI! Click here for the background story. Sorry it's long.

My living space continues to be a mess- the vicious cycle continues, and I continue to be effected by it- both mentally and physically.

Quite frankly, asking for help in situations like mine is embarrassing. It's humiliating to reach out and say:
"Look, because I've been having huge health issues, I've let my living space get so out of control that I can no longer handle cleaning it myself because the dust alone would be enough to cause an allergic reaction that would leave me down for the count."

But, I did it. I sucked it up and put up an ad, asking for someone to clean and sort things in a VERY messy room. I got answers, and one of them even sounded like a nice human being! Excited and nervous, I responded to her, and long story short, she's coming in 3 days!

Except...

Except that now, due to unforeseen expenses (which may or may not include a whopping $100 rent increase), I find myself in a bind. This is essential for so many reasons and NEEDS to be done, but I'm not sure how to come up with the fee without borrowing money from someone.

I really, REALLY don't want to borrow the money from someone.