At this point, I've transitioned to doing hospice pretty much full-time. I still do relief work maybe one day a week, but I may be dropping that after this summer - I'm keeping busy enough that it's possible that relief time is cutting into my time to care for hospice patients, rather than giving me something to do when I don't have any hospice work.

Anyway, I realized that I haven't ever taken the time to write down what a regular hospice day looks like for me. So, just for the sake of anyone curious, and for my own posterity.....

( Hidden, likely to get long....Collapse )

I know the world is full of badness right now, and I know that it's bleak and horrifying, and I've been doing what I can to be both a candle in the darkness and a squeaky wheel. And I feel guilty talking about almost anything else. But at the same time... I want to chronicle some of the goodness in my life, too.

[Unknown LJ tag] and I just came back from a week in New Orleans, and while it wasn't quite our usual winter Week Somewhere Warm and while I'm not quite sure NoLa is quite my city, it was ultimately a lot of fun (thanks in large part to evcelt's recommendations; thank you!). But our last night there was, far and away, the best part of the trip.

We had booked an evening Haunted City tour with a company that promised a "more immersive" experience - hands-on ghost hunting, access to haunted locations, and a full recreation of a Victorian seance. I figured that, whether the ultimate experience was awfully good or just awful, it would at least be entertaining.

When our guide handed umbran, our resident skeptic, an EMF reader, I couldn't help but make a Supernatural joke. At which point the guide paused just enough to show me his Devil Trap tattoo. Within 20 minutes we were having to make a conscious effort to slow down, stay on topic, and not leave the rest of the group behind as we babbled at each other about everything from American Horror Story to the Fox sisters and their role in the Victorian spiritualism trend to the Salem witch trials and our own personal theories behind them.

The tour and the seance were both hugely fun, and as things were wrapping up I made a reference to my work in hospice and end-of-life care, and half-joked about being a psychopomp. And he paused, and told me to stick around for a few minutes after the official end of the tour.

Which is how my husband and I wound up at the invitation-only vampire and magic-users speakeasy hidden behind one of the jazz clubs on Bourbon Street, nursing something red and sugary, learning card tricks and divination, and playing 'what White Wolf setting was your favorite?'until sometime after last call.

I know that I lead a charmed life; sometimes it's just more obvious than others.....

This was the year that I finally had to invoke legal action to stop my father from contacting me. It was the year I cut off all contact with that half of my family.

This was the year that three of my friends died in one week.

This was the year that I spent four months throwing up everything I ate, and being told by doctors that it was all in my head.

This was the year that I watched in horror and disbelief as my country crashed and burned.

This was the year that I learned just how extensive and disgusting the abuse I was subjected to as a child was.

---------------------------------------------------
This was the year that my business took off and became not just self-supporting but me-supporting. By next year, if I wanted to, I could quit relief work completely.

This was the year that I was accepted into a program that will culminate in me becoming one of the world's first certified professionals in my field.

This was the year that I learned how to put my own well-being ahead of that of my abuser.

This was the year that I stopped being afraid of cameras.

This was the year that I let myself be open to friendships, and found so many amazing people because of it.

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I have no words for how mixed my feelings are about 2016. I have no idea of what 2017 will bring. I am a sea of confusion and emotions right now....

So I've been going through some rough stuff lately, and it's been taking a while to get better. Which is a nice way of saying.... it really hasn't been getting better. And so I woke up today pretty much the same way I have for the past almost-month - nauseated, nightmare-shaken, and sincerely wishing I could just cease existing instead of facing the day. But I had a house call to get to, so up and out with me.

And then I got to the house - this was a follow-up on one of my chronic cases. And the kid who opened the door greeted me with a huge smile and 'HI DOCTOR BECKY!' (said kid wants to be a vet, and gets very excited when I let them try on my stethoscope and help with exams). And the dog trotted up to me wagging its tail. And the other kid insisted on showing me his new Star Wars bag that looks JUST LIKE my doctor bag, and the family insisted on sending me home with a handful of homemade chocolate chip cookies that they were prepping for the brunch they were hosting in a few hours, and I remembered for a little while why I do this thing that I do.

Whatever else good or bad I can say about my life, or the world... I am unbearably, unbelievably lucky in the work I have fallen into.

Work, holidays, work, circus, work, sick, work, and the world. I know I don't post here a lot; it's a hard habit to keep when I'm also juggling a work blog and a new business and a life.

But! I have things to say now! In particular, I need to talk about the Arisia charity raffle.

Arisia is coming up pretty soon now; we're only a little more than a month out. And the convention is graciously allowing me to run a charity raffle this year, to raise money for the Alzheimer's Association in honor and memory of Sir Terry Pratchett.

So far, I've managed to put together a pretty impressive handful of prizes, but there's always space for more. Our last raffle raised about $4000; I'm really hoping to beat that number this year.

I know that the world is scary and harsh right now, and I know everyone has a lot on their plate. But please - if you're a crafter, or an artist, or a writer, or a maker of things, or a worker in any sort of interesting field - if you can find the time and energy to donate, we need prizes.

Let me know, and I can tell you where to send your donations (or pick them up from you if you're local). And if you have any questions I can do my best to answer them. Help me fight the dark and remember that people have the power for great goodness, no matter what else is going on in the world....

I feel like everything in my life is in a state of 'getting ready' right now.

I'm trying to prep for the first session of a LARP that'll be running in a couple of weeks.
I'm working on choreography and planning for a silks routine that, if I'm lucky, will be ready for stage-time in a few months.
I'm trying to put together plans for Thanksgiving dinner, between menu and hosting and figuring out who'll be there.
I'm gearing up for Module 3 of my Hospice Certification Program, and trying to ready myself for whatever that entails.
I'm trying to organize our winter trip (to New Orleans this year), and figure out timing and housing and travel and what to do while we're there.
I'm pulling things together for the Arisia charity raffle, and trying to ramp up outreach for prize donations.

And all of this amounts to a lot of work, worry, and anticipation without a lot of concrete accomplishment. I'm generally pretty good with delayed gratification, and I like keeping busy... but I also need to keep this in mind when I start asking myself why I feel so frazzled and unproductive at times.

Today is the first day in over a month that I've gone in to work at a clinic, come home, and been done.

Not 'come home, change bags, and go out on a hospice call.'
Not 'come home, change clothes, and go out to circus class.'
Not 'come home, open my work laptop, and spend an hour and a half doing hospice paperwork.'
Not 'come home, make dinner for six, and play hostess.'
Not 'come home, turn around, and go out to a meeting.'

Just... come home. That's it. No more work, no more errands, nowhere else to go.

I made dinner (frittata with chorizo and potatoes), and I have a pan of maple apple bars in the oven. I worked out. I actually had a chance to look over the list of games for Intercon, and sign up on my own instead of handing my password over to my taller half and asking him to pick something for me.

And now.... what do I do? It's pushing 9pm. I'm tired, but not ready to sleep. It's still early. I've done all the things. I've answered all the email I can muster the energy to answer. I suppose I ought to wash dishes or finish unpacking from last week's conference or something like that, but I'm out of energy. And at the same time, sitting still when I'm not so exhausted I'm at the point of collapse feels foreign and awkward.

I have time to read. Or watch Channel Zero and get some work done on my latest crochet project while I'm still awake enough to follow the plot and my grip isn't too fried to hold the hook. Hell, I might even get more than six hours of sleep tonight.

Luxury....

Last night should have been amazing. I had dinner with a handful of friends whom I don't get to see near often enough, and we laughed and joked and talked about games and horror movies and the show we were going to see. And then there was a Postmodern Jukebox concert, and it should have been awesome.

Except.... it was good, but not enough to erase the deaths that have been slamming my community for the past week. And in retrospect maybe loud and crowded isn't what I needed. And why was the guy next to me on his phone for the whole thing, while the person in front of me kept getting up to walk in and out of the concert hall?

And afterwards, it felt like everyone in the hall was there to be actively mean to me. Looking at the merchandise table, someone felt the need to push me and tell me that they were in line and I was trying to cheat my way in front of her. I left, so she could buy her damn t-shirt without my heinously offensive presence, and paused on the sidewalk outside the line of traffic to try to collect my cope.... and someone else walked out, went out of their way to shove past me, and made snarky comments about the apparently heinous crime of standing on the sidewalk. And I just fell apart.

I'm not surprised; between still recuperating from sickness, multiple deaths, exhaustion, sleep deprivation, and multiple triggers, I was overdue for a PTSD breakdown. And umbran was there to help me through the worst of it. He wrapped me up and coaxed me into moving and shielded me from the people and kept me upright and talked to me as we headed back towards the T station.

And when we were almost there, cutting through the edge of the Commons, we found the labyrinth.

Someone had chalked a labyrinth onto the walking path. Huge and complex and intricate and waiting. And I started walking it. And a few turns in I felt my shoulders relax and a few turns later I could feel myself focus again, and by the time I reached the center I could see the world clearly again, instead of through the lens that told me everyone was attacking me. It wasn't a perfect and instant cure, but it helped more than I thought anything could.

Arnis says we can move the cars and draw a labyrinth on our driveway, in case it helps in the future - and that, if it does, we can paint it there more permanently. I don't know if it'll help in the long run or if this was just a fluke, but I'll try anything....

So as I may have mentioned once or twice here, I'm currently taking part in a Hospice Certification Program. Year and a half, couple hundred hours, gets me a handful of extra letters after my name and teaches me a ton of cool stuff.

I'm nearing the end of the first of four units, and so far it's been almost completely amazing. This part is a series of online lectures, with quizzes after each section and mandatory group forum chats and essays and homework, on the basics and fundamentals of hospice care.

It's been incredibly useful, both in reassuring me that so far I'm practicing with good standards of care and in giving me tools I can use to make my practice even better. The lectures are usually anywhere from half an hour to an hour long, and they've covered everything from definitions of hospice to laws and practices regarding body care to explaining to clients the concept of patient-directed care, and I swear there's been at least one thing in each and every session that's been directly applicable to my day-to-day work.

And now I'm on the lecture about Compassion Fatigue in Caregivers. Which sounds incredibly useful and relevant and helpful and important, right?

You'd think.

Except it's almost four hours long. And it is almost entirely comprised of the lecturer alternating between rambling about herself and humble-bragging about how of course, while we're supposed to take care of ourselves and not overwork, we all know how hard it is, and she *totally* doesn't practice what she preaches and just works so hard.

Out of curiosity and boredom, I actually watched the timer in the last section of the lecture to see how much time she spent talking about the subject matter versus talking about herself. In an 18 minute lecture, precisely 4 minutes and 32 seconds were spent *not* talking about her life.

I have learned absolutely nothing about compassion fatigue. I have, however, learned about her hobbies (quilting and bicycling - but not long distance, only maybe 30-40 miles at a time; her husband prefers 50 mile trips), her food preferences (she hates cooking, but will eat peanut butter out of the jar with a spoon), the angst she felt moving away from home to go to college and how frequently she called her parents her freshman year, her divorce, how much credit card debt she accumulated in her first five years in practice, her decision to go to her first swing dance class (a desire to challenge herself, because she has a fear of trying new things), her initial hatred of sewing and how she parlayed that into said quilting hobby......

I still have an hour plus of this lecture to go. If I didn't have the prospect of a quiz and forum conversation at the end, I'd be so tempted to just hit 'play' and let my cats watch it instead of me.

At least I know I'll get the question about her preferred sandwich spread right.

My doctor asked me to call him with an update today, to let him know how I'm doing. So I called him, around 1:30pm, and left a message with his answering service (the only way you can communicate at all) telling him that I'm maaaaaybe 20-25% better, that my pain is still very positional, and that I'm still getting dizzy and falling down with any effort or exertion.

At 6pm he finally called me back; he's worried about my lack of improvement. In particular, he's worried about my heart. Enough that he felt that I need a cardiac ultrasound. Immediately. He ordered me to go to the ER tonight, and told me that he'd call ahead to let them know to expect me.

I had to run home (I was on my way back from a euthanasia, so I had to handle the aftercare), but I was at the ER by 7pm. Where I got hung up at intake because they had no record of my impending arrival.

After half an hour of hunting, paging doctors and offices, checking multiple departments and hospitals, digging through stacks of faxes, and generally failing, a note was finally found that my doctor had called, but that the day shift person had failed to write it down anywhere, and hadn't told anyone on the night shift about the call. No worries, though; I was promised that I could be admitted through the ER and get the ultrasound tonight.

So I was admitted to the ER. Where they.... started the entire triage from last week again. Wouldn't listen to a word I said. After half an hour, when I was informed that I would be getting bloodwork and chest x-rays and an EKG, and told them that I had had all of that done RIGHT THERE ONE WEEK AGO and all I needed was an ultrasound, I was told that they don't do that there.

Not at all. No after-hours ultrasound service at all, no urgent ultrasound service at all. All imaging must be scheduled, at least one week in advance.

It would have been super helpful if they had told my doctor this when he called. Or me, when I came in. As it was, I'm at risk now of being rejected for future procedures because the end result was that I now have a record of showing up with chest pain and then departing without being seen (because I see no reason in repeating the same tests that were non-diagnostic last time). And I still don't have the test I need.

The only option they gave me was to be admitted overnight in the hopes of a slot opening in the morning, if the ICU docs felt it was crucial. At which point I decided to just come home, because I can be here and be slightly less miserable. I've left a message with my doctor's answering service, letting them know that I wasn't able to get the test they requested; hopefully they'll be able to find someplace that can do it sometime over the next couple of days.

But.... big fail, Lawrence Memorial Hospital. And I'm tired of being broken.