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.