Home At Last

A few hours home and already I begin to doubt everything.

I wake up in the dead of night and realize a trip to the restroom is in order- and that my body has let me sleep too long.
But I've got this, I've got it down to a science.
But... that was in the hospital. I desperately try to maneuver my wheelchair around the boxes stacked next to my bed. After a few false starts I make it, launching myself through the too-narrow-for-a-wheelchair doorway, and hopping, using the alarmingly wobbly new walker bought earlier today, towards my goal. I just barely make it.

Once I've wheeled my chair back to bed, I see the beds other occupant, Lucy, eyeing me, her tail starting to wag once I meet her gaze. She starts for me, and I hold her off until I've climbed in. I no sooner have pulled the covers up over me when she wiggles up and plops herself on top of me, lying fully on my body, her face less than a foot from mine.

I pet her, murmuring to her as my thumbs stroke along her soft cheeks and jowls to the downy underside of her ears, rubbing behind them. I talk all the while, telling her what a good girl is, and how much I missed her, but inside I can't stop thinking.

I was so anxious to leave that place- they helped you with just enough that you believed you didn't need help, and now, after just half a day home, I see how untrue that is. Already I've faced the harsh reality that I can't do anything for myself here. I can't get inside by myself, I need someone on the other end. I can't carry a beverage or plate or bowl of food. I can barely maneuver. I admit to myself how unsafe I feel, how absolutely out of control. I'm scared. At the rehab place, I knew that if I fell I had help- even if I caught crap for it, the fact is, I was safe. But that's not true anymore.

What happens if I'm on my own, as I usually am here, and one thing goes wrong and I fall?? What happens then? I remember too well how easy that is, and that was in a handicap friendly facility.

I am still petting Lucy, and her eyes drop shut as I hook my fingers under her harness to rub her there. She, for her part, doesn't seem to care for anything but the fact that I am home again.

I feel tears in my eyes and something like sadness tugs at my heart. I'm surprised when the thought comes- that I actually will miss the occupational and physical therapists. I will miss working with them every day. I wish that could continue. I think that as insufferable as some of the other people were, I'd put up with them again to be able to work with that team on my recovery.

Crying now, I want to turn to someone and grab them and tell them to take me back, please take me back, that I'm not ready to take these risks and fight this stupid uphill battle for the next six months on my own. I'm not ready to be afraid of what will happen when I try to do something, anything, alone. I'm not ready for the unkindness or limited patience of strangers in public or people around me in general as I struggle to do the smallest things. I'm not ready to have to ask for so much from my family and roommates and friends. I hate it. I hate being helpless and powerless.

As I lie here, on my comfortable bed in my own room, my lovely sweet dog now curled up between my feet, I think to myself that I am not ready to be home.

All That Glitters

I pressed my face into the pillow I was using to shield my view and held as still as possible, trying to remember not to hold my breath, as my nurse did her work.
"Okay, Miss, we're almost done with the first one," she said. There was a pause, then I felt the same thing I'd felt eight or nine times already in the vicinity of the right side of my leg, below my knee.
It was the strangest mix of sensations- the skin of my three incisions, still partially numb, seemed confused all by itself. I felt movement, not unlike when your stomach drops to your shoes or gets 'left behind' when you go down a hill really quickly. Then, a sharp pinch of pain, followed by the type of relief you can only get from scratching something that has itched for a really, really long time. This happened with each staple- a tiny metallic snap, the movement, a sharp pain, relief. The sensations varied- sometimes the pain was a tiny, barely there discomfort, sometimes it was sharp enough that I had to bite my lip to keep from making some sort of expletive-laden exclamation, instead choosing to grip the pillow tighter. Sometimes that feeling of movement was almost imperceptible, other times it seemed to slither over me, making my stomach churn for reasons I can't explain.
The one constant was that confusing moment of relief- sometimes so satisfying that I found myself sighing and going all but boneless, before the process began again.
As the nurse moved on, making steady progress, all the sensations started to mingle together each time- which was, needless to say, incredibly confusing. It was also more than a little disconcerting.

After she did the first two incisions, the nurse asked if I wanted to stop, and have the morning shift nurse do the final one. I shook my head- I didn't want to go through this crap again- and braced myself. A few more minutes and something like sixteen staples later, it was over. My leg ached and tingled as she applied what she told me were 'steristrips'- "They're to hold it closed while it finishes healing." - and wrapped it in a clean ace bandage.

"You can unwrap it any time- the doctor says it needs fresh air." she said as she gathered the trash and supplies.

I'll get right on that, I thought, shaking my head at myself. In the entire time since I'd been in the rehab center, even through daily bandage changes, I had yet to deliberately examine my leg. The few glimpses I'd gotten were completely accidental- the product of a slipping bandage or- in one fun moment- accidentally pressing the camera button on the cell phone I was using to distract myself and block my view while it was changed.

Thirty eight shiny metal staples have been in my leg for two weeks. I've been in the hospital for 17 days.

Finally, tomorrow, I'm packing up my 'easy dressing' clothes, planting my ass in my shiny new insurance-provided wheelchair, and going home.

I know I should be ecstatic- and a part of me is. I mean, I'd be crazy not to be- finally, home, with my own bathroom and my own shower and my own bed, and no hospital staff who hold way too much power to care as little as some of them do! No more isolation and no more hospital food!!!!

But this other part can't stop thinking about what needs to happen in order for me to be able to function there- and how many things aren't resolved yet. I have no safety handles or rails in my bathroom, no shower chair, no table to work at. I have no way to make my own bed, haven't even begun to think about cooking-and what about laundry? I can't carry one thing on the lap of my wheelchair and still operate it myself, forget about a big pile of dirty clothes!

Besides the tasks of everyday care, there's my recovery to think about. Here was easy- every day included at least one hour of occupational therapy (learning to function doing things like reaching for stuff, brushing my teeth, getting dressed, etc., along with lifting weights to up the strength in my arms) and physical therapy (building strength and endurance in my good leg and upper body in general, increasing the distance I can walk- er, hop using my walker- without taking a break, making sure the muscles in my hurt leg don't shrivel up and die, maintaining flexibility in the same leg). Not doing it wasn't really an option, and I thrived when I had a physical therapist directing me. Though home has a lot to be said for it, that is not one of its charms. I'll be on my own- I'll have to be my own task master.

To be perfectly honest, that is not something I've ever excelled at. I mean, I was always the girl who did the month-long project in a stress crammed 12 hour period before it was due. Time management is not a strength for me.

So, I'm nervous about a lot of things, going home. I'm nervous I won't have the help I'll need, and I'll have to ask someone I really don't want to ask. Worried I'll fall and die or break myself again. Worried, probably most of all, that I won't be able to be my own motivation, and that will cause my progress on the road to recovery to slow down drastically. It's not something I want, but old habits die hard.

I can't help but wonder how this is all going to work- and when I'll finally get it together enough to take a good look at what's under that bandage.

An Embarassing Little Hiccup....

If you say something kind and don't mean it, is it still kind? Or does that make you unkind, and sneaky or two-faced besides? Which is worse? We can't always be nice people- sometimes what you think about saying in a situation isn't nice. But is it better to say it, if it isn't a blatant insult, as long as it is honest? I've wondered about that lately- there are valid points to both arguments.

Yesterday was a pretty damn good day. I worked hard- rose to challenges, sweated, made progress physically.

((Names have been changed for privacy))

Lynn, a wonderful, straightforward woman, is one of the physical therapists here. During the few days I've been here, I've taken a quick liking to her. She has perfect personality to be a kick ass PT; a balance of no nonsense attitude and a compassionate nature which, I've found, is rare. She exudes this energy of confidence and straightforwardness. 'You can do this, and you're going to, and it's going to be hard and great.'. And you believe her. You want to do better, and you work harder- because it's a gentle inevitability. You aren't forced into anything- it's just what reality is, with Lynn.

I respect her a lot, and value her opinion- recognizing people's limits and assessing their progress is literally what she does, so when she told me yesterday that the big thing that was stopping her from recommending that I go home(!) was that I didn't have a ramp to get up the few stairs into my house- and then told me my project was to arrange to get one that afternoon- I was walking on air. I rolled back to my room with a huge smile on my face, knowing I was excelling, moving forward, pushing and driving towards a milestone, and I was making it!

I went to bed last night researching the things I would need to safely adapt to life back home- best options for safety equipment, price assessments for necessary supplies, possible solutions to problems I knew were likely to arise. I was energized for hours, even though my muscles ached and my arms felt like noodles, I couldn't stop planning. I finally fell asleep and got at least 3 solid hours - a little over 4 total. I was ready to face today. Man, I knew I was going to be sore, and tired, and my eczema even flared a bit last night- but suddenly these all seemed like things I could knock out, nothing was getting in my way!

I woke up around 8:00 a.m., my bladder gently sending the signals that it was time for a trip to the restroom. I sat up, stretched, and looked around for my walker, frowning when I noticed it had migrated out of my reach during the night.

I reached out and pushed the call button.
"GoodmorningmayIhelpyou???" the callbox squawked.
"Hi, good morning, I need some assistance to go to the restroom, please." I said, keeping my voice pleasant even as I still cringed a bit saying the words.
"AlrightI'llsendsomeone."
"Thank you!"
"Alrightthankyouhaveagoodday."

A moment later I heard the general comm call go out:
"Vikkitoroom16,please Vikkitoroom16."
I sat back and waited, scrolling through Facebook on my phone. I realized my need was growing a tad more urgent, and looked at the clock. Ten minutes had gone by.
I waited a few more, then reluctantly pushed the call button again, shifting in my seat.
A general comm sounded out a moment after I pressed the button.
"Vikkitoroom16."
Wait...what?
They hadn't even bothered to answer me? A twinge of annoyance passed through me, momentarily distracting me, but then my bladder spoke up again. I had to go.

It didn't matter that the rules said someone had to be in the room with me.
It didn't matter that I could only stand on one leg.
My bladder absolutely did not care that my walker had been moved away from me to sit (hahahaha) right in front of the bathroom.
My bladder did not care about anything. It was go time. Resistance was futile.
I stood up carefully, gaining my balance on my one foot, before re-positioning my arms to lean against the bed and the counter, moving towards the bathroom one hop and re-position at a time. It killed me to not rush- especially when, even as my hands wrapped around the handles of the walker, It became clear that I wasn't going to make it.
And I didn't.
After, I sat in the bathroom, staring down at my wet clothes through eyes misty with tears. It may seem like such a small, stupid thing- so easy to make fun of- pissing yourself, Who does that?
But it didn't seem small to me. It was- embarrassing, and disappointing and overwhelming and complicated and felt like such a big step backwards on the road to independence I was fighting for. I knew I'd gotten urine on the back of my bandaged leg; one of my two pairs of shorts was soaked, along with my underwear.

When you're a fully functional adult, and you don't make it to the restroom quite on time, what do you do to fix it? Cursing or laughing, you strip down out of whatever clothes need changing, clean yourself up- wet washcloth, baby wipes, maybe even a quick hop into the shower if you have the time or inclination. Inconvenient, but easy and quick to fix.

What I knew as soon as I knew I wasn't going to make it was what would happen after I didn't.

That I'd need to find a way to clean up while not being able to turn or bend very far and balance on one leg- after wrestling the wet things off over my bulky bandage, trying not to get said bandage wetter. I didn't have a shower scheduled for another 24-48 hours and that is a procession in and of itself; it literally takes 45 minutes. I'd have to call my nurse and ask for new underwear, and then I'd have a decision to make. I only had one more pair of clean shorts and one clean pair of pants. The other pair of pants wasn't as clean- I'd worn them during physical therapy and occupational therapy, and got sweaty. Did I want to get a clean pair dirty or would I be comfortable and better off in the dirty ones? When would I next get more clean pants? Could my parents come by today and pick them up and drop some off tomorrow? Were they busy? Was that fair to ask of them? They already were doing so much. And as for my bandage, how dirty had I gotten it? Would I need to call the doctor to replace it (since the nurses apparently aren't allowed)?

Exhausted, my leg throbbing from sitting down too fast, tears of frustration, embarrassment, and general distress in my eyes, I waited for the help to finally come. But noone did. I waited, at least another 3,4,5 minutes. I cleaned up using the scratchy paper towels from the dispenser, laboriously removed the shorts, every move of my right leg causing it to twinge, and dropped them in the corner. Still, I was alone.
I finally pulled the emergency assist cord, hanging my head and acknowledging that I probably shouldn't have. Was this an emergency? I didn't know anymore. Was I overreacting?

More time went by. I gave up. I hoisted myself up and, nude from the waist down, hopped back to my bed, and leaned on the damn call button.

Noone even bothered to answer me.

A knock sounded and a tech walked in, looking at me expectantly, her eyes sliding to the untouched breakfast tray that had woken me in the first place.

"You didn't eat your breakfast?" she said. I felt my teeth clench.
"Nope," I said, trying for a smile instead.
"I buzzed earlier because I needed help to get to the restroom and my walker was out of reach," I said "but no one ended up coming, so I chanced it and tried to get to the restroom but didn't make it in time so I wet myself and got my bandage wet. Then I was stuck in there, so I pushed the emerency help button. So I haven't had time yet to eat breakfast."

She stared at me, her face blank, silent for a beat before responding

"This is something you need to address with your nurse." she said,

"Okay, I understand that," I answered "I'm just saying-"

"Because I saw the alert light outside so I came in to check."

"And I appreciate that, thank you," I started, but she plowed on

"Because we can't come immediately. Your nurse is busy, okay? She's giving out medication. She will come when she is done."

Anger rose in my chest. I couldn't believe it- how was I the inconsiderate one?! I sat there, fuming, unable to even look at her as she started moving around the room, trying to figure out why the alert light was on, proving that she hadn't heard a word I'd said to her. I didn't speak up, letting her puzzle over the call box, reset it, then go outside and come back in when the light was still on.

My nurse came shortly after, toting the medicine cart. Again, I tried to explain, and again, I was cut off, belittled and met with defensiveness, before ultimately having everything that had happened disregarded as if it didn't matter. My nurse huffily went to find replacement ace wraps for my bandage, stripping off the bare minimum of the ones on my leg that she could, and replacing them. At one point, as she fumbled to pull the ace wrap underneath my calf she said "Would you mind helping to lift your leg?"
"I'm doing the best I can," I answered, struggling to accommodate her "I'm sorry."
She leaned back over her task
"God help me," she muttered, rudely. I froze and stared at her before I had to look away, blood rushing to my cheeks.


Later on I told Lynn what had happened. It was the only time that I'd get to tell one of the staff the whole story and have them listen to me. She immediately called the charge nurse, who heard about one third of what happened before thanking me for informing her and leaving.

Later on, my nurse came in, all false smiles and 'sweeties'- until her gaze dropped to a dose of supplement she had given me at breakfast which I'd told her I wouldn't be taking. She raised her eyebrows at me.
"You didn't take it." she said flatly, gesturing at the little clear cup.
"Nope." I confirmed
"Why."
"Because as I said before, half the time I take it, I throw it back up immediately", I said, looking away from her and back at- anything else in my room "And I'm not interested in throwing up."
She stepped closer and I cringed inwardly.
"Well I want to know what you plan to do about this if you won't take a treatment for it?" she demanded
"I don't know," I said carefully "I am trying to figure that out, but this one won't work for me."
"Well, what are you going to do?" she asked again
"What is your plan?"
"I don't have a plan!" I responded, squeezing my eyes shut, focusing on my tone.
"If you do not take your medication I will get in trouble for this if something happens to you."

Ah-ha. a little voice in my head chimed in. That explains so very many things.

"I wasn't aware that you got in trouble if I took responsibility for not wanting a medicine." I said, simply.

She turned her heel and walked out, leaving me behind.

The whole time I'd been interacting with these two women, and with the charge nurse, I'd been seething, screaming in my head, cursing them, shaking my fists, pounding on tabletops, swearing into their faces in my head. That's honestly where I was. I'd been stripped to a level of emotional vulnerability and then- it felt- put out for ridicule by the very people who were supposed to help me. I was livid at the way they treated me, the way they blamed me- and their job was supposed to be to help!

But I didn't say any of that. I didn't yell. I didn't lose my mind. I maintained as much calm and respect as I could towards these people. I treated them with the biggest dose of kindness I had....And I hadn't meant one damn bit of it.

Does that make me a bad person? Two faced? Dishonest? Slimy?
Because honestly, I think that refraining from losing my mind at two women who were that incredibly rude, mean and unprofessional was a damn good thing to do.
Especially since that was one hell of a pit to crawl out of to try to salvage what was left of today.

It may only be 8:00 p.m., but I find myself starting to doze off in my wheelchair. I hope tomorrow will be better.

I can only do the best I can with what I've got.

A Look Further Behind the Curtain

It's not all tedium, lately- my life isn't all sitting around and being bored- but sometimes it seems more safe to stick to the facts. Today, I ate my breakfast late because the person doing my orientation has no objection to cold scrambled eggs, so long as she is not the one eating them.

That's much easier than saying that this past week has been very tough emotionally- and it's safer to tell strangers about eggs than it is to say that an hour or two ago, a well meaning older woman who works at this facility came up to me, and, patting me on the arm, assured me that everything happens for a reason.
And at that moment, some little rubber band in the recesses of my brain snapped and, in my head, I quietly started to yell. I didn't yell at the woman- instead, my words poured out over a very supportive internet friend of mine who I will keep anonymous.

one of the nurses came in and told me everything happens for a reason

and i'm like '....? okay i'm waiting'

out with it, you know?

what's the reason for me now being physically UNABLE to go out now that i had started to overcome that pesky mental block

what's the reason i now can't get my permit for another six months

or- get a job

or become more independent in, you know, any way?

or meet a guy, for f*ck's sake, a guy who actually seemed to like me

who's now, understandably, probably a little put off, but a six month waiting period before you've even met once can kind of do that to a person

or jump at that second chance to do something i really loved before my health got in the way the first damn time and i had to drop it

the chance that literally just made itself known

what's the reason, ma''am?

was i not at the doctor enough? was i not a loser enough? could i possibly have stepped up my game? did i slack off?

what's the f*cking reason i'm almost twenty seven years old and my goal this week is to learn how to f*cking get underwear on again?!

My friend stayed completely still and quiet until my tirade had ceased, and then gave me their usual steadfast support.

Around the same time, I'd posted a 'jokey' kind of lame 'someone come hang out with me' status update on the failbooks, and had a well meaning friend tell me that they were there for me, but that 'buzz kill' posts like that didn't make anyone laugh.

I immediately deleted the status- I was mortified at being misunderstood, apologizing to this person for being a buzz kill- and then I realized what I was doing.

In a moment this evening, while I sat here bored and unable to move, enjoying the brief partial respite the latest dose of painkiller gave me from the near constant 7 out of 10 on the scale pain, I'd posted that if anyone wanted to wind down after their fun Halloween plans, they should come and visit me. I'd then made some jokey comment about how I was kidding- it was late anyway and it's not like I had anything to give them. And finished with a 'So come and bring stuff!' It hadn't been a noone pays attention to me post- it had been me going 'Boo, I have no fun stuff to do tonight, and I'd love some company but understand it's way too late to ask, sadness but it's okay!' in crappy joke form.

It may not have been funny or clever, but damnit, there wasn't anything horribly wrong with it. It wasn't emotional blackmail. It wasn't 'vaguebooking', it wasn't me screaming into a camera with eyeliner smearing down my sobbing face.
It was a baseline of expressiveness.
......And I was embarrassed about that. Because one person said it was a buzz kill.

I almost didn't share this at all. Because it's a mess- it hasn't been edited, and it's even less eloquent than I usually am- which is really saying something.
But then I remembered that this blog is supposed to be about a health struggle. One of the many things it's not is pretty- but emotional struggle so very rarely is.

This experience that I'm personally writing to you about, whoever you happen to be, where I tell you about my life with chronic illnesses and this brand new kick in the teeth- well, emotional crap is a big part of what makes the whole thing suck.

I'm not going to pretend it doesn't exist. And sometimes, like today, I'm even going to air it out.

Buzz kills be damned.

Happy Halloween, reader.

"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.