Category: symptoms

First Time For Everything: Dropping

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Also this weekend! And something I wanted to mark down, and something I should be keeping track of, and so you get this little nubbin post.

Saturday was the first time I dropped something. I was washing a plate in the sink, and I dropped it, and it chipped against a stoneware bowl. I remarkably did NOT lose my shit! Just, “well fuck, I can’t replace this plate, they don’t make them anymore. I guess this goes with the chipped bowl from the same set, now.” Disappointed. Upset. But shit held together.

It’s not the last thing I will drop. It won’t be the last thing I break when my hands prove unable to handle the weight. Maybe if something shatters spectacularly, something I love, that will be the time I lose it. Instead, I turned the plate over, found the chip of crockery in the sink, and sighed. Time to get lighter plates.

Further conversations with my stupid body, 3AM edition

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A combination of Fall weather finally arriving and making things colder, depression, lethargy, vacation recovery, and a grab bag of other things have seen to it that I’ve been sleeping a lot lately. Saturday was for sleeping. I was in bed Friday at 6PM, screwing around on my laptop and doing my nails, asleep probably around 10, awake and panicky at midnight, medicated and back to sleep until around 11AM. I stayed in bed and played with my phone until about 1:30, took a nap until 6. I wore myself out cleaning the cat box area (THE LITTER ROBOT IS STILL SERIOUSLY THE MOST AMAZING THING YOU GUYS) and vacuuming; emptying the litter tray and refreshing the puppy pads, then running the vacuum cleaner in a couple of spaces was the most energy I was able to put forth, and even that had me dripping in sweat and tired, I’ve been feeling very…fally? lately. Like, any minute I’m going to crash to the ground, because I’m tired and my legs aren’t holding up and my knees keep buckling and there have been a few close calls, so I’ve been very cautious and conserving my energy as much as I can. There were a few times when running the vacuum that I was leaning on the machine for support and nearly dropped a couple of times.

Yesterday though, yesterday was a normal day for the first time in foreeeever. I woke up at 10, and was actually rested. This has not happened in recent memory. I still took a nap from like 2 – 5, but it was a leisure thing and not a necessity and Sunday was otherwise a really normal energy level, productive day. It felt AMAZING. Did loads of laundry, put said laundry away, organized some stuff, put things away, was treated to a short visit by dear friends with a Hello Kitty Cafe delivery (HELLO KITTY MACARONS!), more Skyrim, showered, played with my phone some more and chatted online with friends, and was trying to sleep by 10PM.

Which is when my brain and body decided hey, fuck you. Which was exacerbated by my cat Parmesan, who is old and skinny and the room was cold, and so he insists on sleeping on my face because that’s where the warm air comes out. Which is not conducive to breathing. AT ALL. I have a fuzzy blanket that I usually wrap over him, but it had just come out of the dryer and was still a little damp, turns out, so I shoved it aside and tried to just sleep with this cat on my face and my other cat Ianto trying to nuzzle me too and scratching at the covers to come under but he doesn’t really want to come under the blankets, he wants to stand there half covered while I skritch his head and the moment I stop he will go away. So while I have one cat pawing at me, another dancing on my face with his icy little paws, one blanket short in a cold room, the noise of my upstairs neighbors doing laundry, I somehow managed to fall asleep around 11.

At midnight, I woke suddenly out of a dead sleep. Which is a thing I’ve been doing lately, and it sucks a lot. Like, solid peaceful sleep and then an hour later OH HEY YOU ARE SUDDENLY AWAKE AND YOUR HEART RATE IS OUT OF CONTROL AND YOU DON’T KNOW WHY! WHEEEEE! WAS IT A DREAM? WAS THERE A NOISE? WE WILL NEVER KNOW! HAVE FUN CALMING DOWN AND GETTING BACK TO SLEEP!

My heart is pounding and I’m cold. I want another blanket.

good luck getting up loser

Getting out of bed is becoming a Herculean task, and not because I just don’t wanna. Physically pulling myself out of bed is an effort, which is made worse because I sleep with body pillows and cats. I mean, really, my bed is ridiculous. And comfortable as hell. There’s half of it covered with a ginormous stuffed squid and a cat bed with a heating pad under it, and then a body pillow dividing my side from the squid side, and then a reverse moat of pillows shoring up the other side, so I’m in a sort of delightful pillowy trench when I sleep, with a weighted blanket over my legs. So if I want to get up, not only do I have to dislodge a cat who WILL NOT GET OFF OF ME, I have to wiggle away from the weighted blanket, toss the covers off of me while Parmesan keeps trying to get back on me, and remove the barrier pillow like some velvet rope allowing me exclusive access to Out Of Bed, swinging my legs over the side and lifting my body up by gripping the side of the mattress and pulling. It’s ridiculous, and I’m getting a new bed in January that is awesome and adjustable. But yeah, it’s a Whole Thing, getting out of bed.

don’t fall down LOL

Well that’s kind of up to Body, now. It’s been a jerk lately what with the knee buckling and not being able to vacuum one stupid room without leaning on walls. OK. Mission accomplished, blanket retrieved (mmmm fuzzy) and OK GOD PARM GIVE ME A MINUTE TO SETTLE IN. Ok. Sleeps now.

1AM: twitch! twitch! your arm is twitchy! ha ha ha! and your hand! twitch! Twitch! Isn’t this fun! It’s like being poked with a stick from the inside!

2AM: hey. hey. hey.

What?

Your foot itches. Like, REALLY BAD.

Goddammit. Who cares. Sleep.

Itchy! We’re SUPER ITCHY! itchy itchy itchy itchy itchy!

OH MY GOD. FINE. *scratch*

Itchy! itchy itchy itchy itchy itchy!

*scratches forever*

OW OW OW OW OW YOU ARE BLEEDING WHAT THE HELL!! STOP! WHAT IS WRONG WITH YOU.

Oh my god, body, shut up. Stop itching. Sleep!

maybe you should get that checked out by a doctor cause your foot’s been itchy a lot

It is WINTER. My skin is DRY. WHATEVER. SHUT UP. SLEEP.

2:45: dry skin doesn’t come with little bitty blisters, just sayin’

I do not want a doctor visit. I have had enough of the doctor visits for all time. Shut up.

itchy itchy

3:30AM: cramps! crampy crampy cramps! All down your arm! NO DON’T STRETCH YOUR HAND BACK LIKE THAT the OT said you’ll get claw hands if you overextend your hands like that, make a fist!

But that doesn’t stop the cramping at all and it just hurts more!

oh my god we’re going to have claw hands forever in no time you can’t even open a packet of chips anymore, you have to make a claw hand and tear it with your knuckles i wonder how long we have left of opening cat food cans our cats are gonna starve oh no

Fuck off, brain, it’s fine, they make automatic can openers you know. OK. Hands stopped cramping. *yaaaaawwwn*OWQOWOWOWOWOW WHAT THE ACTUAL FUCK WHY DO I GET CRAMPS IN MY SHOULDERS WHEN I YAWN WITH MY HEAD TURNED. WHAT THE FUCK IS UP WITH THAT. OW OW OW OW WHY IS THIS HAPPENING.

I dunno. Fucking ALS, man.

your muscles are dying and it hurts because you’re dying

SLEEP. OH MY GOD.

4AM: hey remember when we didn’t have to lean our head against the bathroom stall to pull our pants up that was pretty weird huh how you could just stand up without even thinking about it

Go to sleep, brain.

no but seriously we can’t even stand up in the braces anymore we have to balance on something that is some fucked up shit i wonder when the chair will happen

4:15AM: we are going to have to get some help cleaning the apartment because that is ridiculous and out of control i mean do we even need to live in a space bigger than this because we can’t even manage this space as it is

FUCKING SLEEP. JUST LET ME SLEEP.

Let’s take some Ambien!

One, that’s a stupid idea because it’s way too late. Two, we don’t have any more.

shit. ok. Well we can fall asleep without it. This bed is comfy, and Parm has stopped dancing around.

I can’t wait for the new bed.

we don’t need a king sized new bed because no one is going to sleep with us ever again

MOTHERFUCKER.

haha you should post about all of that and call it tmi train to traumatown or something

My love life or lack thereof is not something I want to talk about on the blog.

why not people want to know what kind of sex lives dying people have i’m sure

THERE IS NOTHING TO TALK ABOUT.

and that’s the title right there

4:45AM: hey the inside of your leg itches now. scratch it. A lot. HEY OW THAT IS TOO MUCH.

5AM: *Molly decides it’s Time For Love. She does this thing where she reaches out and just puts her paw on my mouth. And then ducks out of the way when I try to pet her. It’s cute as hell but I hate this game*

5:30AM: Hey guys would now be a bad time to have a really nasty headache?

YES.

yes

TOO BAD BECAUSE HERE WE GO!

we’ve been having a lot of these i wonder if it’s a tumor

NO IT IS JUST BECAUSE YOU WON’T SHUT THE FUCK UP AND LET ME SLEEP. SLEEP IS A THING WE SHOULD BE DOING.

6AM: *Parmesan decides to tell me he’s hungry, leaves to potty, and then comes back with more Dance of the Icy Toes on Your Face*

6:45: Well I am awake. And I do not want to be. I wonder if my alarm is going to go off soon. Let’s see…Yep. 5 minutes. FUCK.

*Ianto finds a plastic bag and starts playing with it*

I HATE EVERYTHING.

Sometimes silence seems safer.

tragerstreit3 Comments

Hey guys.

I’m doing that thing I do, which is to just not say anything if I’m having a bad time, but the point of this space is to document all of it. All of the awesome, all of the real life boring stuff, all of the hard parts, all of the ugly bits. And while I hate burdening people with my woes, it feels disingenuous to not talk about them. Here, of all places. Where I’ve purposely carved a space.

So here goes.

I had a bad weekend. It kicked off Friday, when about an hour before I was supposed to leave, I was asked to provide information in the aid of making people unhappy, basically a sort of “we have to take some toys away from our kids, which ones?” and I know that it’s just going to make things harder and everyone’s already stressed out. There is literally nothing I can do about this, and while realistically I know it’s not up to me to be the Morale Champ of our group, most of the time I feel like it is. So when things are stressful and I can’t fix it, I get unhappy. I have a very limited power, and I use that power beyond what I probably should to keep things together, but it’s worth it to me if I can help my coworkers feel less shitty about their jobs, because I like them.

I’ve been watching my job take things away and make things worse, and it’s the nature of business, I totally get that, but it is supremely frustrating to see things happen and know that it didn’t used to be like this. And so I fell in to a sort of employment despair, because I can’t see things getting any better at all. And in that dark space, I reverted back to the thought that I STILL don’t know the origin of, “one more year. You just have to put up with this for one more year.” And my brain seized on that and began planning my exit and I completely freaked out, both because massive life change and holy shit could I afford this, but also a sort of egotistical WHAT THE FUCK ARE THESE GUYS GOING TO DO WITHOUT ME. If I leave, the smallest, stupidest things will cease to be, things that don’t mean much but make their lives easier. Like a goddamned supply cabinet. We’re supposed to fill out a form on a web tool when we need office supplies, but I deemed that Way Too Fucking Stupid and spent a couple hundred bucks outfitting us with a goddamned supply cabinet so that you can get a fucking PEN when you need one instead of filling out a form and waiting for an intern to bring you one. If I leave, no one is going to maintain that cabinet.

It’s all stupid shit, but it was my first moment of “holy shit my absence is going to cause problems for someone when this disease takes over”. There’s an intellectual exercise in “what would happen if I leave” that I think everyone indulges in, and to a revengey sort of degree when it’s to do with stressful relationships or jobs and we imagine how screwed they’d be if we just walked out; but this was a for-real, scary, “I am going to be gone and my void is going to cause someone genuine discomfort.” And it hit me kind of hard. And my brain, of course, spun in to the nightmare world of trying to plan financial escapes and mentally going over all of the homework I still have to do and…..

My brain still in this space, I went to game night with some coworkers, and that was awesome! Except when filling out a character sheet, and my hands just..wouldn’t work. I have very good penmanship when I take the care to do so. I have been complimented on my ability to write legibly on white boards. I’ve noticed some decline there, but that night I could barely read my own writing. And it sat in my gut and festered, and when I got home that night, I probably should have allowed myself to cry it out, but I tried to medicate it away instead. And that led to a whole weekend of moping and sadness instead of one night of crying jag catharsis.

I laid in bed and my cats sat on me and it was hard to move them off of me, and that made me sad.

I thought about the special pen and ink I got in New Orleans to write my goodbye letters and now I’ve waited too long to do that, and that made me sad.

I looked around my kitchen and the drawers of baking things and knew I’d never bake to the level of professionalism I wanted, and that made me sad.

I read Facebook and found out that my friend with cancer is taking a downturn, and I was sad.

I watched a new series that people were excited about and I just couldn’t get into it, and that made me sad.

Fun plans were canceled for Sunday morning and I just didn’t have the energy to do something else instead, and that made me sad.

A friend with MS reached out to be in a bad space, and I provided what comfort I could, and her pain and anger made me sad.

My cat barfed in the hallway, and I just…couldn’t get up to deal with it that moment, and that inertia made me sad.

It’s lifting now, it’s still there around the edges, but it will fade, it always does. But I need to be honest with myself when I get sad, and I need to give myself permission to mourn, and I should probably find a space to talk about this with someone who gets it but isn’t my therapist, but all of the ALS forums are just so AWFUL, one part “MY LIFE IS THE TERRIBLEST AND YOU DON’T UNDERSTAND AND HERE IS MY LITANY OF WOES” competition and one part “We sadly announce that our member Whassisface died this morning.” Neither is helpful. Cause sometimes it ISN’T terriblest, and I’m going to die, but not today. And sometimes you just need to say “This sucks” and have someone say, “Yeah I know” who really DOES. And then lie and say it’s going to be okay, even though it isn’t.

I’m learning a lot of things. I’m learning to let myself be helped. I am training myself out of assuming that when I accept that help, it is a burden to someone else. I’m learning to let myself be weak. I’m learning to give myself permission to breathe in the in-between times without becoming a lazy depressed lump. And I’m learning to let myself grieve for myself. They’re all hard lessons, things I’ve trained myself out of over a lifetime of only ever being able to count on myself. It’s hard to be vulnerable. And it’s hard to put these things here, it’s so much easier when it’s energetic anger or joy.

But for now, I’m a bit depressed. It’s okay. It’s understandable. And allowed. But it’s hard to be. I want to be my usual bouncy optimistic self, and she’s still around here somewhere, but she’s taking her sweet time coming back around.

So, sorry it’s been so long. I’ve been quiet and I shouldn’t be.

I think of you a lot, though. And I miss you.

Clinic Day

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Sorry it’s been a bit of time; life has been…interesting. Last Monday I had a Clinic Day. My brother Gecko kept me company. It went like this!

Appointment 1 : Respiratory Therapy

I’m grateful that this was the first one. This one sucks the most. It involves inhaling as much as I can, and then blow out hard and fast into a plastic instrument, and then…keep exhaling. It’s like… I don’t even know what it’s like. It sucks. Try it. Inhale as much as you possibly can, plug your nose, and then blow out hard and fast and keep exhaling for like, a count to five. Feel light headed, don’t you? Now do that two more times. While someone is yelling at you to keep going. She gave me a little plastic clamp to go over my nose while I exhaled to make sure that no air escaped that way. “You are Master of the Nose Clip,” she pronounced. I’ll try very hard to live up to the title and not abuse my newly granted power. In the end, she pronounced my breathing was healthy and normal (yay!) and gently admonished me for not doing the breath-stacking every single night. She didn’t seem to care that I wasn’t using the CPAP after I’d moved, but I ought to.

My brother has video of me doing the breathing exercise. I have to be nice to him from now on or he’ll publish it.

Appointment 2 : Speech Therapy

This appointment was to make sure my swallowing and speech was still as normal as I felt it was. She watched me eat a shortbread cookie, and drink a swallow of soda. It’s weird to have someone watch you intently while you eat, and weirder to have them put their hand on your throat to feel you swallow. It’s like..you start to wonder how you normally do it. But I passed her tests and was pronounced normal. Hooray for me.

So the two things that will kill me have not started to happen yet. This is good.

Appointment 3 : Neurology

Dr. Goslin was out, so I saw her colleague instead. She was very nice and knowledgeable. We ran through the normal strength tests, which she pronounced good, but yes, there is weakness in my hands, but the PT person would know better about that. I’d started a conversation with Dr. Goslin to maybe FINALLY work out what’s been causing my daily headaches for the last oh, 25, 30 years and part of my time with Dr. Sax was spent continuing that talk. Dr. Goslin and I had concluded the next step was going to be to try amitryptaline, which is not only can prevent migraines (yay!), but might help with the daily headaches, and also was a mild antidepressant, and ALSO might help me sleep. (sidenote: holy crap has it ever, but that’s another post) We were taking me off of Wellbutrin last time, and we didn’t want to start a new one until I was off of that. So we put that scrip in. I was disappointed I didn’t get to see Dr. Goslin, but she’d been on call all weekend and I totally get the need for a freakin’ day off. She’s got a lot going on. I was also directed to get another blood check to make sure Rilutek isn’t eating my liver (it isn’t).

Appointment 4 : Social Work

Rachelle the Magnificent was my social worker for this appointment, and she had in tow the new director of Assistive Technologies. We had a talk about caretakers and resources, and a lot of other things that gave me much to think about. I fortunately have a lot of time for things, and can coordinate a lot of it myself, but I really do need to have things officially in place sooner than later. We talked about a follow up appointment so she can see my new apartment and see its accessibility. Gecko had some questions of his own answered. Yay!

Appointment 5 : Physical and Occupational Therapy

The two women I worked with in this session were familiar faces, one of them being the PT I was seeing while we were trying to figure out what Godzilla Disease really was. We measured my strength some more, which was predictable results: feet are nearly useless (I can only juuuuuuuuust wiggle my big toe now) and they tend to turn in at the ankles because my tendons are tightening up due to lack of stretching. There’s no muscle there to pull them to stretch. I have a manual stretching exercise that is supposed to help somewhat. Calf strength is going, thighs are still strong. 5s all around on the upper torso, except my left hand. She had me stretch my fingers out and resist while she tried to pinch them together, and they weren’t able to resist much. I still have full range of motion, but there is a measurable loss of strength there – 4 of 5. I am in an every day fight to not let this freak me out. She watched me walk down the hall with my braces on, and with the walker I was borrowing from the ALS loan closet. She agreed I am MUCH more stable with the walker which, on the one hand? No duh. But on the other hand, it’s nice to have it confirmed that I not only FEEL more stable, I AM more stable and less likely to fall.

The occupational therapist measured my grip strength (again, doing something hard while a woman yells at you HARDER! MORE! HARDER! is a surreal experience). She asked about my struggles with daily tasks I’d noticed popping up, and I was making a considered effort to be open and honest and accepting the help she offered. I admitted the toilet in my apartment is CRAZY low (seriously other people have told me so, too) so she offered a toilet frame with bars I can use to haul myself up. I said okay. She offered a shower chair. I said okay. The Zombie Tramp house had a seated shower, so I hadn’t needed such a thing before, but I accepted this for my new place. I don’t need it yet, I can still shower standing, but I lean against the wall when I do. A chair might be easier. She also gave me a couple of pieces of something called Dycem (registered trademark) which is a flexible grippy plastic sheeting that I can cut up and put where ever I need extra grip, like a piece across the back of my phone so I can hold it easier, use a piece to grip jars to twist them open, wrap a glass in it so I don’t drop it, etc. She said once I start using it, I’ll find a million uses for it. She’s probably right.

Appointment 6 : Nurse

The nurse on staff is a lovely woman, I like her a lot. She was basically just there to tell me that if I needed them, they were always around. She gave me the wrap-up paperwork, and said that after the next and last appointment, I was free to go.

Appointment 7 : Registered Dietician

You know how when the dentist asks how often you floss, and you lie, and you both know you’re lying? Yeah I was avoiding that with the dietician, so when she asked how much water I drink a day, I admitted that no, I don’t drink water. At all. I hate the way it tastes (water does TOO have a flavor). I also admitted that I eat like crap and don’t eat breakfast usually, unless you count an energy drink as breakfast, heh heh.

She does not.

There’s not a lot of dietary advice that comes with ALS, because you’re pretty much encouraged to eat whatever you feel like and don’t try to lose weight. She made me promise to swap out ONE soda a day with a glass of water instead. And for heavens’ sake, EAT SOMETHING FOR BREAKFAST. She gave me a cookbook of easy to chew, easy to swallow foods, which she said I do not need to take now, but it has really interesting information about what physically goes on when you swallow, and some other tips in general. So I went ahead and accepted it now, even though I absolutely do not need it yet because my swallowing is fine. It has a recipe for stroganoff in it though, and it made me really want a good beef stroganoff. mmmmm.

And then, after stopping in the lab for the blood test, I was free to go!

Wrap up

No surprises. I’m happy to have it medically documented that my breathing and swallowing are still fine. I’m discouraged about the hand strength loss of course. By ‘discouraged’ I mean ‘freaking out’ but I’m learning to cope. I have a lot of people around to help me out and so far my typing is still awesome. So as long as I can game, we’re good. I’ve since started the amitryptaline, and it is KICKING MY ASS. I have been sleeping SO HARD the last two days, and it’s near impossible to wake up. I hope that evens out. We’ll see. My blood test came back fine, my liver is not imploding. Yay. I have a followup with Dr. Goslin in August, and my next Clinic Day is in November.

So that’s the update!

Betrayal

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I’m not sure it’s possible to put into words how it feels when your own body betrays you. It’s like Lemony Snicket said about the loss of a loved one: “‘If you have ever lost a loved one, then you know exactly how it feels. And if you have not, then you cannot possibly imagine it.” If you’ve had your body just stop working the way it ought, you know how it feels. And if you haven’t? You can’t possibly imagine it. I can’t properly convey the complicated feelings it invokes. But it’s not gonna stop me from trying.

So.

Falling down.

I’m becoming good at it. By which I mean, I haven’t broken anything yet!

They come with no warning. There’s no preparing, there’s no prevention except possibly living in a bubble and/or strapping in to a wheelchair already/never doing anything ever. One leg or another just suddenly says NOPE and then I’m on the ground. It happened today while I was walking to the title office to sign over my house. I was walking slowly, I had my cane, I was watching for uneven sidewalks, but I was just …on the ground suddenly. There is a split second of OH SHIT I AM ABOUT TO FALL and then gravity. There’s nothing you can do about it. I scraped my knee a bit, wrenched my ankle a little because it’s a whiny bitch that can’t do its job right, and roughed up my palm, but it didn’t really hurt. I managed, in my wobbly goose ascent, to mostly land on my butt. There were no witnesses.

The WORST part was trying to get the hell back up. The cane was mostly useless, I need two hands to haul myself up anymore. I gave it a couple tries, like a newborn deer trying its legs out for the first time, but SCREW those little baby deer, man, they got FOUR legs and I only got two that don’t work. I sat/knelt on the sidewalk for a minute, surveying my surroundings, trying to figure out how I was gonna do this. To my left, shrubbery and then a little steel fence. The fence is perfect, but the shrubbery is an obstacle. To my right, freshly watered grass and a tree. I sacrificed my clean pants and opted for the slightly muddy track to the tree. Kneeling in the dirt, I planted my heels against the sidewalk and kinda pushed myself up against the tree. Once I got back to my feet, I was fine.

There wasn’t a lot of angst involved in the process. Just quick thinking and scheming and logistics. The thinking/feeling comes AFTER I’ve solved the immediate problem. And my thought process was almost entirely:

WHAT THE SHITTING FUCK, BODY?! I THOUGHT WE WERE A GODDAMNED TEAM. WHAT IS THIS RANDOMLY DROPPING MY ASS ON TO THE SIDEWALK BULLSHIT?! DO YOU WANT ICE CREAM? ARE YOU BLACKMAILING ME FOR ICE CREAM? WELL GUESS WHAT, SHITHEAD, WE GOTTA WALK TO THE STORE FOR THAT. AND THAT MEANS NOT DROPPING US ON THE SIDEWALK FOR NO FUCKING REASON.

I’m trying, I really am, my body says back. It’s just hard. Everything is so much harder than it used to be.

YEAH OKAY I GIVE YOU THAT I MEAN FUCK WE ARE SWEATING BUCKETS HERE FROM JUST WALKING TWO BLOCKS EVEN IF IT WASN’T ASININELY HOT OUT ALREADY. BUT FUCK, MAN, COULDN’T YOU HAVE DROPPED US SOMEWHERE I COULD GET UP WITHOUT GETTING OUR PANTS MUDDY?

You have as much warning as I do. I’m sorry. The last few weeks have been rough, maybe we could take it easier for a little bit?

WELL SURE I WOULD REALLY LIKE THAT, BUT WE HAVE TO DO THIS ONE THING TODAY. WE HAVE TO DO THIS AND THEN WE WILL BE DONE WITH THE HOUSE WITH THE STAIRS FOREVER.

…Ugh. Stairs. I’m so glad we’re done with those.

WORD. AND ANYWAY DIDN’T WE GET LIKE, ALLLLLL THE SLEEP ON MONDAY?

We did? But I don’t feel rested at all. You’ll have to take that up with Brain.

hey look dudes it’s been a rough coupla weeks a’ight i’m having a hard time dealing with all this at once so maybe just back off okay

WELL NO SHIT IT’S BEEN ROUGH, YOU WON’T SHUT UP. IF YOU’D JUST LET US GET THROUGH THIS STUFF MAYBE WE COULD NOT SUCK SO BAD AT LIFE AND FALL AND SHIT.

Yeah!

hey fuck you body you’re the problem in the first place you know if you weren’t killing us all by deciding to shut down then there would be no stress over house sales and we would not have fallen probably i’m just saying and we could stay in the zombie tramp house cause we like that place but no you can’t even get up the stairs without sweating like a little bitch

SHE HAS A POINT.

Fuck you both, alright? Can we just get to the signing so we can get on with the day?

WELL I DON’T KNOW, BODY. THAT IS KIND OF UP TO YOU.

Oh. Right.

hahah fuck you loser

OKAY LET’S DO THIS, OKAY. AND BODY, MAYBE YOU CAN STOP DUMPING US ON THE SIDEWALKS SO MUCH.

not to be a dick or anything but maybe we should get an actual walker so if this happens again we can get up off the ground easier and maybe it won’t happen so much cause we’ll be more stable and stuff

…YEAH. YOU’RE PROBABLY RIGHT. FUCK. WELL LET’S JUST GET THROUGH THIS SIGNING OKAY AND THEN WE CAN DEAL WITH THAT.

ok man whatever hey body you ready to do this shit

Yeah. Hey, sorry. I mean…I really am trying. But everything’s so much harder, you know? I’m sorry this sucks so bad. I’m trying.

YEAH. I KNOW. I’M SORRY FOR YELLING..I MEAN, I’m sorry for yelling. We’ve been dealt a shit hand and I need to be nicer to you. I’m sorry. We’ll get through this. I know you don’t mean to be unreliable. I mean, you’re what gets bruised and scraped up after all. I just get embarrassed.

and you know uh also reminded that we’re gonna die sooner than later in a pretty shitty way but maybe that’s just me cause i mean a fall is a pretty clear indicator of decline and stuff but hey

Okay yeah, that too, but that comes later. Usually. But of course now that you’ve brought it up. Fuck. Yeah. I guess I am falling more, lately. They’ve already asked if I want a chair but I ..I just don’t think I’m ready for it, I mean I thought I was getting around okay and so far nothing really bad has happened when we fell, besides freaking out bystanders.

…dick move, brain.

just saying

We hate that phrase, brain, and you know it. It makes us sound like a complete tool. You could replace ‘just saying’ with ‘I’m an asshole’ and still convey the exact same message.

Okay, you two. Fuck it. Let’s go sign away our dream house.

Ok. I’ll get us there. Just go slow.

hey though seriously you know we’re gonna be a’ight though, right cause i mean we’re doing good all things considered and we have peeps at our back and it’s gonna be okay

Yeah. I know. This sale happened quickly, for much more than we thought we’d get, we had so so many friends show up to help, and Justin did all the post work so we didn’t have to. Seriously we’re pretty goddamned lucky, all things considered. Let’s go sign some paperwork.

Can we get ice cream afterwards?

fuck yeah ice cream

Hell yes we can. Let’s do this shit.

Complicated

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“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” -Terry Pratchett

“Complicated.”

It’s become my go-to phrase when people ask how I’m doing. “Life is complicated.” Check off that box on Facebook, I am officially in a relationship with ALS and It’s Complicated.

Nothing is simple. Everything is terrible, and everything is wonderful. I am cursed and blessed. And everything is complicated. I have, as the late and very great Sir Terry Pratchett said, two diseases. Two minds. The ALS mind and the Knowing I Have ALS Mind. I call them Future and Fatality. They argue constantly over everything I do, every plan I make is scrutinized by both sides, every human interaction is watched with both minds. Future is all about the practicality of the day to day, maintaining a sense of normal through all of this chaos. Fatality is about the hard reality that my time is very much abbreviated and some allowances must be made. Future is the one saying I have to work until I can’t, so as to prolong the quality of my life and finances for as long as possible. Fatality is the one saying FUCK THIS, we are DYING, who the fuck wants to work until all quality of life is gone?! Let’s spend our money making the last days AWESOME. Future says, yeah, but we still have to go to fucking work tomorrow, you moron. Disney World souvenirs don’t buy themselves.

They’re both right.

…It’s complicated.

There is definitely some sense of maintenance of the status quo that’s necessary. Continuing to work not only provides a stronger income than I’ll get on disability, but it’s feeding me a sense of normality, and there’s a great comfort in the routine. I can handle this. Yes. I’m dying. But there’s still work to be done. The floors still need swept, the cats need feeding, and while I’d like to do nothing but sleep, that’s not going to help anything. I can continue because I must, life is moving and so I, too, have to continue to move. Acknowledge that I am not dead yet.

There are definitely concessions that need to be made. Considerations to signing a 30 year mortgage that I know goddamned well I’m not going to see the end of. Allowances to make life fun while I still have the ability to participate. Plans to make so that memories are made and things don’t get left undone. Write your fucking will. Go ahead and spend some money on stupid things because I know in my heart that it doesn’t even matter. Make myself as happy as I can, while I can. Acknowledge that I am not dead yet, but WILL be.

Their key arguing lately has been about living situations. It’s amazing what will trigger me and what won’t, and unfortunately I never know until it happens. I can brace myself for things I think will be problematic, but sometimes they aren’t. Sometimes it’s the stupidest shit that trips me up. And it changes from day to day. Some days I think living with Danielle will be just fine, and some days I think I will do anything within my power to live alone until I absolutely can’t. It’s not about living with her, it’s about living with ANYONE. Some days I accept financial advice with grace, and some days it’s FUCK YOU I KNOW HOW TO SPEND MY FUCKING MONEY LIKE A MOTHERFUCKING ADULT. I HAVE GOTTEN THIS FAR, YOU KNOW. I AM NOT STUPID. Anger comes up unexpectedly, avoidance gets triggered, there are hurt feelings and tears and anger and misunderstandings, and later you sort through it all and you don’t know what happened, even after.

My main babe and I had a huge thing last week. I wouldn’t call it a fight. It was a..surprise boundary test that went very poorly. Plans kind of got put on hold, and I wound up making a rash concession that I had to withdraw and I feel fucking awful about it. Lines were drawn. Many many tears were shed and for a few days there, ativan was popped like candy to try to stave off the panic attacks that just kept coming. It cemented our need for couples counseling. It brought up a lot of good questions. It hurt a lot of feelings. I really, really can’t accept help gracefully and need to work on that. I need to draw lines and feel comfortable, as the center circle, maintaining them. Even if I’m wrong, I’m in charge of my own care. And even if I’m right, other peoples’ opinions are valid. Even if I choose to ignore them in favor of what I want. And a lot of times, I don’t know what the fuck I want.

It was complicated.

We’re still okay, of course, we love each other to pieces and that’s never going to change. It was a surprisingly brutal and hurtful exploration of caregiver/cared-for relationships and I did not like it one bit. And it’s going to continue to happen, and we’re both going to get stronger for it, and it’s going to fucking SUCK while it happens. I hate making her life hard. But I can’t help but do so. Fucking ALS.

I wound up looking for, and finding, an apartment of my own in the interim. My house closes on the 6th of July, but the housing market is extraordinarily chaotic right now, so finding another place to buy is impossible. Especially when I don’t even know what the fuck I’m LOOKING for, and things I am okay with on paper suddenly turn in to panic-inducing dealbreakers. So I am going to live in an apartment, and continue to be alone while I can, and get through life with my best babe and my awesome planets in orbit as best as we can manage. Looking for an apartment is always shitty, and right now rents are INSANE – I wound up accepting an apartment that is 2 bedroom and less than half the size of my house with 6 square feet of patio and a tiny kitchen for $50 less than my goddamned mortgage. And I’m having a really hard time with it. I sit here, typing this, looking out at my amazing back yard that will be someone else’s in a month’s time. I walk the floors I installed myself, I sleep in the room I had not even finished carving out for myself, I sign a lease with all of these rules and regulations that being a homeowner just didn’t have. And it’s hard. I’m glad I found a place and have a place to land, but losing this dream of mine is hard. I’m grateful the work is lessened, happy to have less space to maintain in my lesser state, but goddammit this was MY HOUSE. Future is happy that I’m being so practical about it and is planning the move, and Fatality is punching holes in things when she’s not crying her eyes out.

It’s complicated.

Yesterday we moved all of the extraneous stuff that had been taken down for staging, all of my books and DVDs and winter clothes and decorations and baking gear. We put it in storage. It was a really hot day and we all sweated a lot. The heat kept my mind from wondering if I’ll ever unpack some of these boxes. My ability is waning every day, and the longer I wait to find my proper space, the less power I will have to make it my own. I sacrifice my future nesting to further my independence today. And the weekend was a constant reminder of my lessening ability. My handwriting, as I filled out the lease paperwork, was atrocious. My hands are suffering and I am trying desperately not to just freak the fuck out all day, every day. My stupid feet grew wrong and I’ve got nasty bunions on both my feet, and because of the muscle loss, the bone is barely covered with a little bit of skin and it rubs and pinches and is excruciating no matter what shoes I wear – but the only real fix is surgery, and do I seriously want to give up even MORE mobility to get it corrected? Every movement costs more energy than ever before, and even though I wasn’t allowed to move boxes, I am physically DONE from this weekend. DONE DONE DONE. I am tired and sad and grateful – so fucking grateful – to my friends and brother for coming to my rescue on a miserable day. I put them all through a rough day, and they loved me enough to stay. And though I was grieving, I was grateful.

Future is kind of pissed off that I spent so much money for the lease and renting storage space, because that’s money we could be putting away, and it’s really impractical when I know I’m just going to have to give in eventually anyway. Fatality is flipping her the bird and patting my head and telling me it’s going to be alright even though we both know she’s lying. Usually I side with Future, but right now she can fuck off. I have to leave this house that I love, and it’s cruel that it’s so much work to make that happen. Fatality knows we have people who will help and just chill the fuck out and maybe play some video games tonight instead of worrying about it.

I guess this post kind of wandered all over the place. Sorry. My brain is full, I am mourning my loss of independence even as I struggle stupidly to hang on to a shred of it at great expense, I am obsessing over every detail even as I am actively avoiding thinking about any of it. And hopefully figure out the fine line between standing up for what I want and deciding my own fate, and being a goddamned idiot who needs to admit that she’s not as strong as she wants to be. To learn to accept help gratefully while still asserting control over what help I accept. Stubbornness versus weakness, and strength perceived as stubbornness versus self delusion perceived as assertion. And I usually can’t even tell which is which.

All my life, and now so more than ever, I am very, very complicated.

Noise

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When I was younger and cooler and far more existentially miserable, I wore soft leather boots and flowing skirts and metal belts with chains and coins and bells that made a lot of noise. Not so many as my friend Bascha – you could hear her coming a mile away. But the chains around my waist and the handcuffs through the epaulets on my jacket and the many metal bracelets around my wrists and the key earring clanging against the rest of the rings told you I was around. I loved the weight around my hips like a hug, the bright glint of the lights catching everywhere. And when I danced, I’m sure they all made a wonderful clatter. I delighted in jogging down the stairs, listening to the pinging and the rattling sounds that I made.

Hi, I’m Strange, listen to my wonderful assortment of spanglery. I don’t actually want to be noticed, so much, I don’t want to have to interact with you, but I want you to be aware that I’m here, with my jangling cacophony of industrial noise. I had my own joyous soundtrack of chains and bits and keys and bells, shaking rhythmically to my own walk. I don’t march to a different beat, I am the drummer*.

I have a new soundtrack now, a more subtle one. I have new shoes and they make a lot of noise, because they’re not broken in yet. Creak-creak-creak of the fake leather. It goes with the skrtch skrtch scrtch of the Velcro on my braces. And the soft click, click, click of the cane. And the near constant ‘ahrm’ clearing of my throat due to whatever medication is causing that. It’s not such a joyful soundtrack, but it is my noise nonetheless. A song of medicine instead of industry.

Necessity drives this noise instead of a penchant for collecting shining metal bits, and the undertone is the same. I don’t want to be gawked at but I want you to be aware that I’m here, please don’t back in to me. This isn’t music I chose, but it’s not a bad one. I’m glad it’s not accentuated by the rustling of adult diapers or the scree scree scree of dragging an IV stand around. And not the vshhh vshhh vshh of assisted breathing. Not yet.

I am not so young. Not so cool. Not nearly so miserable, despite it all, and I wonder what my younger, noisier self would have thought about that. She’d be crushed we can’t dance anymore. She’d be confused why I’m so much more content than she is, all things considered. And I’d show her the support these medical noises bring, and the emotional support the medical need has brought, and I think she’d agree I have it better of the two of us.

It isn’t stopping me from thinking about buying a chain belt, though.

*All credit for that line goes to my dear friend Linnea, who uttered that bit of brilliance as we sat in my room as malcontented freaklet teens. I don’t think she ever knew how much that phrase inspired me and cemented my complete adoration of her.

He, She, Me.

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He:

A few weeks ago, a few very short weeks, a friend posted something in her facebook along the lines of “our routine doctor appointment turned into a little bit more. He’s being admitted right now, but please don’t worry!”

…and I worried.

She’s like me. Bubbly, happy, all about best possible outcomes, optimism, and smiles. She’s a joy to be around. He’s a sardonic, sarcastic, clever man who used to be my boss. You know he’s awesome if he used to be the boss of me and we STILL talk. He’s snarky and hilarious. They’re both a pair of my favorite people. Still can’t believe they hooked up, much less got married, but they’re fucking perfect for each other and I’m really glad they did. I love them to pieces.

So when she, bubbly, optimistic She, didn’t SAY what had gone awry, I knew it wasn’t good. And then I was invited to a support/information group created in facebook, to keep in touch with what was happening and how we could all help. And then, scary words eventually saw the light of day. Cancer. Stage 4. Scant months to live. Maybe more if chemo works.

And just like that, their lives were over as they knew it. And just like that, the floor dropped away from all of us who knew and loved them.

I can’t even pretend to say I know what it’s like to be told you have a short and definite lifespan. I know how it was for me, how it continues to be, but I can’t even fathom what he’s going through. His time is so much shorter than mine, his notice so much more sudden. He has a wife. And while they’re publicly taking it with grace, no one knows what’s going on inside. Some aspects I can guess at; the panic of Time suddenly a companion, yelling at you about all the things you have to do before you go. The complete bafflement of, how did this happen. Is there something I could have done? But then there’s also the chemo – unlike my timeline, there’s a chance for an extended cut, but only if you can withstand it. And now they have to decide quality of life vs. quantity. And I know that mental argument very well.

There’s absolutely nothing I can do but stand by and love them, and listen, and hold space. And when they make decisions, honor them. Be there as much as they will allow me to be. And then let him go.

It’s the only thing within my power.

She

I wrote about her awhile ago. She was suffering from bulbar onset ALS, and she gave me the chance to figure out and to talk about how I feel about assisted suicide. And she gave me the courage to tell all of you, and start that difficult conversation. It’s a really hard thing, to tell everyone that you are probably going to take your own life and they’re going to have to forgive and be okay with it. She did it with perfect grace.

She had been fighting the Boss Fight of ALS for awhile. Her decline was fast. I only knew her through facebook posts, and it seemed like daily there was another struggle, another development. But she faced it with so much fucking GRACE, and smiles, and gratitude. Her posts weren’t about how she’d never live to see her son grow up, they were about the daily joy she found in his company and the treasure trove of memories she was building for him. Her posts weren’t about her medical suffering, they were about the gratitude for the people who helped her through it all. Look for the rainbows, she says constantly.

April 4th, she had fought enough. She left a goodbye, and a video for her son, and the last words, “Enjoy. I have.”

And then she let go. And so I, too, let her go.

Me:

I’m losing strength in my hands.

I’ve been noticing maybe a month or two now, but I’ve been in complete and total denial. The mailbox lock has ALWAYS been hard, it’s just a bit more difficult to turn the key; must have frozen or something. The lid to the cup is way more difficult to pry off because it’s new. Cutting a piece of steak cramps up my hands, but hey, it’s just cramps. I had AGES before my foot strength was lost after the cramps started, right? My hands are shaking while holding my laptop because I’m just tired. The word of the day and things that I write up on my whiteboard every day just SEEM a little shakier. But I’m sure it’s nothing. Right?

Friday, April 4th, I fell. For no reason. It was the first time that happened; I wasn’t tripping on anything or trying to maneuver, I just…fell. And wrenched my ankle. And felt very sorry for myself and frustrated. And so I told Dr. Goslin this, on Thursday during my appointment. And she confirmed I’m losing strength in my hips.

…And I said I think I might be losing strength in my hands. She did the usual tests. And proved that I am.

I was absolutely right in that this? This is a trigger. This is panic and terror and the beginning of the end. And this makes everything so much worse. My timelines have shifted, and things I thought I had some time to do, I suddenly don’t. I have to write the letters while my handwriting is still stable. I have to do all the things I can’t, soon. And I’m freaking the fuck out. Because I don’t know what else to do but scream.

She asked if I’d like to borrow a motorized wheelchair to see how it works out. And internally I flipped the fuck out because I am NOT ready for that. No way no how. But outwardly I politely declined and said I’d like to wait awhile before going down that road. She agreed that I have a lot more time of mobility left, so there’s no rush. But it’s coming. Danielle suggested one of those old-people jar opening assist things. And I panicked a little but kept it in. I said maybe a walker, but not a wheelchair. Not yet. But my hands are going to have to be accommodated for.

After the appointment we went to the store to get some meds and some air fresheners for the empty rooms in my house that I’m clearing out for sale. And I couldn’t get the fucking tops of them off. I had to use my teeth. I still have dexterity, but my strength is going. And so, too, are all of the things I thought I could do to keep the loss of mobility tolerable. For now I can still type. I can still play video games. But I thought I had so much more time before I had to think about the end of those things. To a time when I can’t use chopsticks, to when I can’t pull myself out of bed, to when I can’t dress myself.

And it scares the motherfucking SHIT out of me.

I’ll get accustomed to the changes as they come. I’ll persevere. But I feel like this is kind of when I really start to die. No mobility? Whatever, that’s okay. Seriously. It sucks, but a wheelchair isn’t that bad. This is a hardship, but not the end. When I am no longer able to draw stupid pictures, no longer able to frost a cupcake, no longer able to chat, no longer able to launch Skyrim…that is the death of me. When I am no longer able to even fucking pet my cats. That begins the days of the useless shell that I become. I wonder if I’ll want to go get the prescription the day I drop something for no reason. I won’t use it yet, but I wonder if that’s going to be the preflight check. When I will start thinking seriously about the endgame.

And I don’t know if I’ll have the strength to let go, when all I feel like doing is trying to hold on.

And I’m really, really scared.

Awww yeah, she’s a Sleep Machine!

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So I got the CPAP machine yesterday! It’s pretty. It’s The AirSense 10 Autoset by ResMed. Or maybe the Elite. I don’t remember. It’s a lot smaller than I expected it to be. The sleep study put this expectation in my brain that it was going to be this massive machine next to my head, when it turned out to be the size of an alarm clock. With a hose.

That heats up!

My respiratory therapist (I have a respiratory therapist! I forget how many that makes in my Medical Posse) showed me how everything works, how to run the morning report, how to clean everything, how often to clean it, when to reorder supplies. And then I signed a contract that said yes I promise I will use this at least 21 days over the next 30 to show I’m SRS BZNS about CPAPpage. No, really, I had to do that. Or pay for the whole thing out of pocket ($1900!) after 30 days or return it to Providence. Weird. And then we fitted me for a mask, and I got one called “Wisp” because it was less strappy-constraint around my noggin. I’m at a relatively low pressure setting, I guess, which is good for beginners. Yay for me. The whole thing fits into a small case, like, I had school binders bigger than this thing, probably. I could put a vandalized Pee-Chee in here and feel nostalgic. But for now it’s just a softcover case, totally would fit in my backpack like it ain’t no thang when I travel.

The first night was challenging as I expected. I took an ambien to make sure I was able to sleep at all. It took a long time to stop feeling like I was suffocating and forcing myself to breathe out. The cats flipped out. I knew they would. When I laid down to sleep, Molly crawled up my torso like she was stalking a beast, pupils wide as saucers, jumping away when I touched her. Ianto was having NONE of that thank you very much, and slept in the hallway, and Parmesan, well. He’s 22 years old. He settled in next to my face as usual. And the awesome thing about the CPAP is that he was flopped over on my face and I could still breathe for a change! It was like…kitty scuba diving. With the only fishes being the ones on his breath. That I couldn’t smell. Because CPAP! It’s MAGIC!

I slept pretty hard, but I don’t know if that was CPAPpage or Ambien-ce. I took the mask off at like, 5:30, I think. I don’t remember. I remember being glad it has auto shutoff. My morning report said I used it for 7 hours and had an average of .4 ‘incidents’ an hour. Which I guess meant I stopped breathing? All of this will be sent to my doctor. By the built-in cell modem. Which I will be honest? Freaks me out a little. It’s like, Big Brother is Watching You Sleep. Fantastic if it helps, but it still feels like I’ve got a little snitch on my bedside. With a heated coil tube and a humidifier. Snitches…have switches?

I don’t even know where I was going with that.

ANYWAY. So I have this thing now, and it’s probably going to be part of my life from here out. Until it’s swapped out with a different breathing machine, I expect. It will eventually become routine to me. I can teach myself to get used to this.

Not sure about the cats, though.

Honk-shuuuuuuus

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Here’s something I CAN post about! The sleep study!

It went…yeah wow. OK. So in the morning, the nurse came in at 6:30, I was already sitting up and waiting for her to come in and turn on the lights. “Good morning!” I said.

She looked at me like I was a little crazy. “I dunno….is it? You had kiiiiiind of a rough night there.”

By which she meant I did not sleep at all.

I got there at 7 like I was told, and waited for the nurse to get herself settled and everything checked in, just chilled and read my book. She came in and hooked me up, and I noticed she did it differently than the previous time – there was no drawing all over my head with a blue wax crayon this time. We fitted me with a CPAP machine, and I was given time alone to adjust to breathing through two different kinds of masks to see which one was easier. I was pretty dang tired so we called it around 10, and I crawled into bed. We did the same equipment checks that made me feel just as ridiculous as before. You are lying there in the dark and you’re told to look up and down ten times. Now left to right. Now blink fast ten times. Now close your eyes, three deeeeeep breaths. Wiggle your left foot. Wiggle your right. (I sucked at those). Etc.

And then she bade me goodnight.

And then sleep completely failed to happen. The mask was not uncomfortable or anything, I just could not get to sleep and stay there. I woke up at one point with flutters – something I’ve had happen for years and years, it feels like a low current of electricity just under my skin next to my left shoulder blade. It’s not painful at all, just uncomfortable and they get worse the more I get frustrated because I can’t sleep. Usually I get up and take kava kava or something, but I didn’t have that option during the sleep study. I recognize them now as a weird sort of panic attack, but there was nothing I could do but just lay there, frustrated, not sleeping, until they went away. Which was….awhile. And then I woke up again later, just…awake. No reason. I think I slept like an hour and a half at a time. Twice.

She said to not get discouraged, people often have a rough time their first try, and it will be easier once I get it home. She tried turning up the machine, which made things worse, she said, and she has lots of notes for my doctor.

I’ll see the pulmonologist on the 23rd.

As always, I’ll keep you posted.

Beautiful Kitten Fish, Sleep Baby Sleep

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I have a very romantic weekend planned. While everyone is eating expensive dinners and watching 50 Shades of Sexual Assault this Valentine’s Day, I will be having my second sleep study. We’re going to try me on CPAP as I’ve said before, and it’s likely I’ll get one of my very own. It’s better than chocolates and roses any day!

…I should note that Valentine’s Day means nothing to me at all. Lest you think I’m actually bitter.

I will call the pulmonologist and make an appointment today, they’ll want to know the results of the study before we get started with equipment and everything. I’m hoping it all helps with the exhaustion and whatnot, I’ve been having a REALLY hard time waking up this last week or so. It might be the med change; we’ve upped the dose of Adderall from 10mg to 20. I don’t know that it’s doing a better job than the Nuvigil did, honestly. But we’ll see.

Sleep’s been kind of elusive these days, but that can be written ENTIRELY off to stress. I’m packing for real, now, and going through things to give up for the garage sale. It’s three times as difficult as it should be – I have to fight my inherent laziness, the high cost of physical exertion that ALS brings, and it’s just..SAD. It’s depressing as hell to go through my things with this air of finality. It’s moreso than the usual “Meh, I don’t need this” when you move, it’s “I will probably never have another use for this at ALL and I don’t want someone else to have to deal with it when I’m dead.” So it makes me tired and maudlin and my brain won’t stop even if I’m physically tired. I have a ton of people on standby who will help me pack if I ask, but they can’t go through my things for me. That’s my sad and lonely duty.

Also, I’ll be honest, the thing with the news article about my work and ALS has stressed me right the fuck out. And that conversation continues on my work’s internal news site.

Work stress, too, was about ALS recently.

Life seems entirely about the stupid disease lately, and it’s all stressful, and it’s really hard sometimes to not just curl up and sleep and avoid it all for awhile. I just don’t have the time to indulge in that. It hasn’t beaten me, not by a long shot, I still know everything’s going to be just FINE, goddammit, but it’s harder right now. It’ll calm down and be okay in a bit, but all I see for awhile is deadlines and packing and expenses and pressure. And while I’d like to just sidestep all that, and play Skyrim instead, I know I can’t, and it will be so much worse for me if I even try.

And so I will continue to work, and pack, and sort, and not sleep very well, and spend too long in the mornings lying in bed and snuzzling my cats instead of getting up and getting dressed for work. For now. For awhile. Not forever. There will eventually be an end to the work, and most of this stress, and I’ll be allowed to properly sleep.

Bloop bloop bloop bleep bleep.

Learning New Can’ts.

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Every day is a voyage of discovery.

I have recently discovered that I can no longer stand up from a seated position without either swinging my arms wildly in front of me for counterbalance, or using my hands to lift my butt off the seat and pitch forward. I have also discovered that I can’t go in to my backyard when it’s muddy anymore, not even to close the shed door because it’s raining hard and the floor inside is getting soaked, because I WILL fall in the mud and bend my umbrella and muddy the hell out of my hands and knees AND lose the freaking key for the shed lock somewhere in the grass. I have also discovered that I can’t step over the threshold of my house without pulling myself up on the door frame or something. Stairs are becoming akin to mountain climbing.

I’ve had two proper falls since the last Amtrak one. I fell on a wet inclined driveway with mulch while getting out of a car. That didn’t hurt too badly except for very nearly ripping my middle fingernail off. That really sucked. And then I had a fall in my driveway while carrying things inside the house. It was my own fault, I was carrying things with both hands and I have recently discovered that well, I should not be doing that. The fall wasn’t horrible, I didn’t break anything, just skinned the hell out of my elbow and landed on my foot wrong enough that my big toe was a solid bruise for a few days.

Lessons learned.

On the plus side? My arms are fucking BUFF now.

I had my follow up appointment with Doctor Goslin last Wednesday. We mostly talked about meds, new insurance, and stupid administrative crap. She checked my strength in my thighs and hands and arms and was satisfied with the rate of decline – there wasn’t any. My calves, though, are basically devoid of useful muscle now and my feet are done. When I don’t wear shoes in the house, my feet just drop on the floor with each step – I call it froggy feet. I don’t walk down the stairs so much as clomp.

The last time I saw her, she recommended a sleep study to see if maybe my exhaustion was in part because I don’t sleep well. The sleep study found mild sleep apnea – no surprise, it runs heavily in my family – but nothing to explain the lack of energy. I’ve got a follow up study on Valentines Day, how romantic! And I’ve been referred to a pulmonologist to see if they have any recommendations about that, but I’ll probably be getting a CPAP machine. It will help with keeping my lungs strong, if nothing else, she said. I can see that. I have no idea how the cats are going to handle it. It doesn’t make so much noise once it’s on your face, but still.

Today, we start the voyage of discovery that is med changes. I was out of Nuvigil about a week before I had my appointment with her, and OH MY GOD the difference. I went straight back to sleeping 18 hours on the weekends and nearly falling asleep at my desk all the time. I went home from work and crawled in to bed with my laptop and passed out at like 9, those nights. Because this is a new year, new insurance, she tried to prescribe me adderall again, and gave me samples of Nuvigil just in case.

Insurance denied the adderall. But not a blanket denial! Just..she had prescribed one to two a day, and they only covered one. It’s the second to lowest dose of it, and I was only ever going to take one anyway, but it took a couple of days to sort it out. And by couple of days, I mean I just got it yesterday. Today’s the first day, we’ll see what happens.

It’s a world of flux and change, even if I have the answers. I know I’m going to lose my ability to walk, but it’s a question of when, and discovering daily the new can’ts. I discovered that I can’t function without some sort of energy med. I don’t have an answer why not, yet, but it’s a new can’t.

But sometimes can’ts are not a bad thing. I can’t do this on my own, because I have people who love me and won’t LET me. I can’t stop moving forward, even through all of the can’ts, because I have so many people carrying me.

I can’t stop believing things are okay, because I know they will be. They’re gonna SUCK and be full of more can’ts than I could ever imagine, but somehow, it’ll be alright. Things will work out.

It can’t happen any other way.

Bathroom Bitching

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I promise this isn’t really TMI, but I’m gonna talk about the politics of bathroom stalls. And a personality defect of mine, it turns out.

I’m getting weaker; even if DocGos says she doesn’t notice any difference. When we first met, I used to be able to walk up the stairs with two hands full. Now I can’t; I have to have one hand free for the rail, and on no-spoon days I need both. When we first met, I could stand up on my own from sitting in a chair. I really can’t anymore.

Which means I need the handicapped stall now – I need the bars. Well, it’s like the cane – I could probably manage without? For awhile longer? But it’s so much easier with, and why make my life harder just to prove to myself that I can, that I’m still an independent woman who don’t need no man. erm. Bars. Yes. Bars. That’s what I was talking about.

And because I need the bars, I am trying really really hard to not be bitchy about it when someone who clearly does NOT need that stall is in it.

Okay – confession. I have *always* gotten a bit internally bitchy about people using the stalls when they don’t need to. It’s a serious character flaw of mine – I get bent out of shape when people don’t follow The Rules. I get irritated when someone cuts someone else off in traffic. Even if the person cut-off doesn’t even notice. I get irritated when people cut in line, even if I’m not in that line. I get mad when people at work leave their dishes in the bathroom when the stinkin’ break room is LITERALLY ten feet away. I get SO MAD when people don’t break down their fucking cardboard boxes and just leave them in the hallway. It’s because I tend to get really mad on behalf of other people, whether they even realize they’ve been wronged or not. By cutting that guy off, by sneaking in line, by not taking your dishes in, by not breaking down your cardboard and putting it in the recycle area, you are making someone else’s life more difficult because you are a selfish ASSHOLE. Even if it’s just a minor inconvenience, there was still no need for that inconvenience to exist, you just created it because you are a LAZY SELFISH DICK. And so I get mad. Because you are not following The Rules.

…Bitch.

ANYWAY. At work, we have a huge wheelchair stall, and the normal sized one next to it has bars, so it’s awesome and I use that one, because I don’t need the space, just the help up. But consistently – CONSISTENTLY – the wheelchair stall is taken up. By tiny, tiny women. Like, a regular stall would feel large to them, WHY do they need the extra extra space? It’s always been a phenomenon that made me scratch my head, but there’s actually been a couple of times that it’s made me wait. And I try not to get irritated, but seriously.

YOU ARE FIVE FEET TALL AND 80 POUNDS SOAKING WET WHY DO YOU NEED A TEN SQUARE FOOT BATHROOM STALL.

Answer: YOU DON’T.

So when I go in there, and both stalls are taken, I have a choice between using one of the other ones, and then using the freakin’ toilet paper dispenser to pull myself up and hope to GOD it doesn’t come off the wall, or wait. And if I don’t have my cane with me at the moment, then they look at me weird for waiting. But if I DO have my cane, sometimes they have the good grace to look abashed. Usually not – they’re oblivious, because people at my work are very self-involved. See: previous posts about trying to not get knocked the fuck over in the cafe and halls because they’re not paying attention.

I wonder if, when I’m in a chair, I’ll be any more irritated. Maybe I’ll do the passive aggressive thing and put a note on the door: “THERE IS SOMEONE IN THIS BUILDING WHO ACTUALLY NEEDS THIS STALL – DO YOU?!”

In Comic Sans, natch.

Realistically, I probably won’t. I’m really good at ignoring those breaking The Rules when it’s me getting shafted. Though, I did get really irritated this weekend about it – I went to Bingo at an American Legion lodge (looong story) and wound up waiting for ten minutes for the one handicapped stall. The other two were simply too wide, I wouldn’t have been able to brace myself on the walls to stand, they were just too far apart. There was a line, and I as time went by I started to say kinda loudly every time someone asked if I was in line, “Go ahead, I have to wait for the handicapped stall, I need the bars.”

Man, I dunno WHAT she was doing in there. She took her shoes off at one point. I thought she was changing her clothes, but she came out with nothing but herself. And flushed a HOJILLION times and used up most of the toilet paper. I just…man. Yeah. She was old, there’s all kinds of stuff happening there that I don’t even know. Probably best that I don’t know. I just know I had to wait ten minutes to pee and she totally could have used the other stalls.

This is all the beginning of the inconvenience, the social stage of decline, and it will be really interesting to see how I adapt to it when it gets worse. Maybe I really WILL become the Bathroom Stall Avenger. Maybe I’ll just pull an Elsa and let it go. It will be telling, either way. Just as I’m discovering the true character of those around me, I’m discovering what I’m made of, too. I have kindness and patience I didn’t know I possessed, and intolerances I didn’t know I had in me.

I’m building my character even as my body unbuilds itself.

Gravity: It’s the Law.

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I want this out here but I’m not going to say much about it because I’m trying really hard to not let it get to me so much so I’ll be quick.

I had a fall tonight. My first proper one. I was disembarking from an Amtrak train, stepping down from the train to the little foot step they have, and my leg just totally gave the fuck up and I fell. There was just nothing to catch myself on. I’m not really hurt, but there will be bruises and scrapes. Mostly I was humiliated. I was sitting on the ground trying to figure out how the hell to get back up because all I had for support was a stupid yellow footstool while total strangers were bending over me, asking am I okay, do I need help up?

“I’m fine, just really embarrassed,” I told a really concerned woman. She assured me there was nothing to be embarrassed about.

There was an Amtrak employee with the club car right there, apparently he’d been waiting for me because the conductor had told him there was a woman with a cane. The conductor had noticed me, because the train came on the opposite track that the station signage said, and everyone had to run to the opposite platform. And so I held up the whole train while I crossed under the platform and back up to the other side, and the only doors they had open were at the front, so it took me forever to hurry over. He knew damn well there was a woman with a cane on board. And that effort is probably why my legs didn’t quite have the strength to manage – I used up my fucking spoons just getting ON the damned thing, so when I got off, my leg just said “nope” and folded under me.

The driver helped me up, basically by having me wrap my arms around his neck and hauling me up. He asked a million times if I was okay. I repeated that I was, just embarrassed, and he also told me it was nothing to be embarrassed by. He just wishes he’d seen me before I tried to step down. “I’ve see perfectly healthy people WITHOUT canes fall while climbing down.” He gave me a ride through the station and out to the front, where my little brother Justin was waiting for me.

I knew my first fall would really suck, and it does, and I’m not freaking out but it’s really frustrating and sad because I know this is just the beginning. And I hate it.

The weekend was otherwise perfect, and I hate that it ended on this note. But it didn’t ruin anything by any means, and I’m going to end this before I dwell on it too much and it DOES wind up ruining it.

Oh yes.

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Since I’m keeping record. I had another sorta-fall yesterday. I was just having a weak day, the walk to the bus took me a half hour and I was DRENCHED in sweat by the time I got there. The bus came at 12:18 and I did not stop sweating until like….1:30. It was a bit muggy, raining on and off, but man. It took SO MUCH EFFORT.

The bus did the kneeling thing, lowering to what would be curb level – but it was still a high step because that stop is on the street. I pulled myself up on the handrails and I just didn’t have the strength to make it up and I wound up kneeling myself. It took me a second to haul myself to my feet, and while I was paying my fare and showing the Honored Citizen ID that proved I qualified for the low fare, I thought, “Well I just kinda negated the need to show him the ID, he just got a demonstration.”

Another slight bruise on my knee, another slight bruise on my ego.

TMI : The Bleedies

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Soooooo in the days, months, years ahead, there’s gonna be a lot of uncomfortable stuff. Things you don’t talk about in polite company. But the point of this blog is to document EVERYTHING, and well, I know some people are curious about this sort of thing. SO let me educate you.

If talking about shark week, Vampire tea parties, communists in the funhouse, girl flu, a red light special downtown, a crime scene in your pants, or rebooting the ovarian operating system makes you feel uncomfortable or squicky? Then now’s your time to bail. Here’s a picture of kittens to wipe your mind clear.

Still with me? Okay.

While contemplating everything after my diagnosis, envisioning my future, thinking about all the practicalities, it occurred to me. What the hell am I going to do about my period? I imagine MOST people with ALS have already gone through menopause so it might not be a common question. But it’s just one more damned thing to deal with, that I am not going to be able to take care of myself. And some nurse dealing with that? Man, why. So I brought it up with Doctor Goslin, and she said when the time came, I could talk to my primary about options.

I decided the time had come.

I wanted to start the process now, when I could still deal with it under my own power and remain in complete control. And I wanted to give myself time to adjust to any side effects NOW, to allow enough time to go by to make sure that I had it under control before life was beyond my own control. I decided to go to Planned Parenthood instead of my primary, because they’d have all of the information about ALL of the methods. I wanted options and informed decisions. I did a lot of research on my own, and I really liked the idea of the implant, but that wasn’t a guaranteed stop to menstruation. So I went with an open mind.

It took me a little bit to find it, but it was made easier by the honest to god protest happening outside. Fetus posters and everything. They didn’t fuck with me though, they just stood across the street singing hymns. There was a sign in the upstairs window that said, “Hello protesters! Donors have agreed to give $37 for every one of you that shows up today! Thank you for coming!”

Heh.

Mannnnnnnnn it took FOREVER. I was half an hour early to my appointment and was taken back 45 minutes after my appointment time. I talked a little bit about it to the aide, she gave me some preliminary information, asked if I wanted AIDS and siphyllis/gonorrhea testing, was I being abused, had I ever been pressured into sex, did I feel safe at home? no, no, no and yes, thank you, I’m fine. She also reminded me it had been 4 years since I’ve had That Thing That Really Sucks and they recommend it every three. Would I like to take care of that today. BOOOOOOOOOOOOOOOkay FINE.

So the clinician came in and we had a long chat about all of the options. Half of them were out because I have a history of headaches and migraines which estrogen would exacerbate. The implant was not recommended because not only is it NOT a guaranteed end to menstruation, the effects vary wildly. Some women get heavier periods. Some women get spotting, some have irregular and unpredictable flows. So that was out. Which is a SHAME because I’d really like to only have to think about this once every three years, and the idea of a little plastic matchstick under my skin on my arm is creepycool.

We decided on depo-provera. It’s a shot in the arm, once every three months. It’s a hormone called progestin, a slow release that prevents ovulation. She told me that she has another woman who comes in regularly with her developmentally disabled daughter, and the daughter gets the shot as a matter of hygiene so it’s not at all an unheard of application. She had me take a routine pregnancy test first. Just cause. Even though it would be a second-in-history MIRACLE if I were. We did the Thing That Really Sucks, and then she stabbed me in the arm with a needle and I was sent on my way.

My arm’s a little sore. I was told I might gain weight, so maybe just be a little careful about what I eat, and depo CAN cause bone brittleness (yay?) so take calcium. I’ll see how this goes from here. When I left, the protesters were gone and it started raining BUCKETS as I walked to the train stop. A really amazingly nice woman shared her umbrella with me, because of course I didn’t have one. This is Portland man, we don’t believe in umbrellas (SPOILER: YES WE TOTALLY DO. It’s just that it doesn’t usually RAIN here, just this nagging persistent drizzle that only barely counts as rain and you don’t need an umbrella for that you sissy. But when a half block walk had me soaked to the skin? Yes, yes I WOULD like an umbrella. Thank you, lovely lady.)

We will see how this goes. I’ll keep you updated. And now you have an answer to a question you might have been afraid to ask, or didn’t occur to you. So when someone asks, what do women with ALS do about their periods? Now you totally know.

Falling with Grace

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I went out to get the mail yesterday after work, and waited for traffic to cross the street. My street’s the only one in the neighborhood that goes all the way through from one major road to another, so it’s busy. Coast is clear, I step off the curb, but here comes a truck. He’s waiting for me, how nice! But the other side is not clear, and it looks like there’s a few cars, so I don’t want the truck to wait for no reason. I think that I will signal to the truck driver that I intend to wait for traffic by stepping back on to the curb.

Except that doesn’t go so well.

Instead, I don’t have the strength in my legs to make that step back, and so I wind up on my ass on the curb in some very crunchy grass. My neighbors don’t water their lawn any more than I do. I’m not hurt at all, just embarrassed, and I laugh nervously, shake my head, and flash the truck driver a thumbs up. Like, hooray for that! ha ha ha I just fell that’s so funny. But I’m okay! He laughs, and drives away.

I wait for traffic to clear to try to stand up. It takes me a try or two.

And I’m not going to lie, when I got back in to the house, I cried. And felt an irrational anger at the truck driver, even though I know if he had understood why I just fell, he wouldn’t think it was funny at all. And I was laughing, too, and he has no idea that it’s a nervous habit I’ve had all my life. When I’m angry, I laugh, and then I cry. When I’m hurt, I laugh. When I’m being insulted, I smile. Until I’m alone. And then I cry. But still I’m a little angry that he didn’t understand it wasn’t my fault I fell. It wasn’t clumsiness. It wasn’t. fucking. funny.

This is the fourth fall. It’s not the worst. The worst one, thankfully, didn’t have any witnesses and was just scraped up palms. It was the day of my diagnosis and my mind was elsewhere so it’s hardly surprising I didn’t quite make the curb. They’ve all been the result of trying to step up and not quite making it, and then not having the strength to correct my balance. So I just kind of sit down. Or kneel. I’ve never been actually hurt, they’re gentle falls.

But they’re a precursor of things to come. A sign that things are going to get worse. Hateful little reminders that my time on my own two feet is limited. The fall itself is frustrating, of course, and humiliating, but they echo of disability and impending loss. There’s no outward injury, just a cringing inside and fear and future loss.

There will be more. Worse ones, too, I wager. And in public, I’ll fall with grace and good humor, and joke about it, and feel like dying just a little, and never let on that I’m not actually okay.

“Nothing bruised but my ego,” I joke. But that bruise hurts like hell.

When I say Amazing, I mean Amazing.

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I gush a lot about Dr. Goslin. BECAUSE SHE IS AMAZING. But, I’m also prone to hyperbole. I get it. You might think I’m exaggerating. But here’s this thing that happened.

Lately, I’ve been having a few more rougher days than usual. Some depression is absolutely expected with a terminal diagnosis. Duh. And I was on antidepressants before I was even diagnosed, because broken brains run in my family and I am no exception. But this last couple of weeks I’ve been more prone to let things get to me, like the Ice Bucket Challenge haters, and slight arguments turn into self-hate sessions, and I am just having a hard time with things right now. In addition to this, things are harder to do, physically. They’re taking a lot more energy than I would think. I’m tired all of the time. And I don’t know if I’m tired because I’m depressed, or if I’m depressed because I’m tired? But everything seems so much harder than it feels like it should be. Friends and family have noticed, and my little brother has mentioned several times joking-but-not that I should ask my doctor for some Adderall. Maybe I’d have the energy to get things done and cleaning won’t be a herculean task that wipes me out for the entire next day.

Monday was a holiday, and a classic Depression Day with lots of sleeping and moping. It carried over to the next morning, which is unusual. I’m typically over it the next day. So I got fed up with being a mopey, tired lump and that afternoon I sent Dr. Goslin an email:

We have an appointment to meet in a month, but I wanted to let you know that when we do meet, I’d like to talk about medication adjustments. I’m not sure the wellbutrin’s doing anything anymore, and I’ve been completely devoid of energy. I know some tiredness is to be expected of course, but for example, yesterday I slept from midnight to noon, ate some lunch, then slept from 2 to 7. And back to bed at 11. It’s to the point my brother told me I should talk to you about adderall or get a speed habit or something. hehe. So when we meet, can we talk about this?

I was expecting maybe an email in a couple of days to acknowledge the question, a quick “Yes, we can discuss your medications when we meet.”

Instead she called me after work. We talked for about about my symptoms, where I was at, and where I thought I should be. She asked what I’d like to do. Do I want to attack the depression, the fatigue, both? I told her I didn’t know, because, (as I said up in that second paragraph) I wasn’t sure if they were separate issues, or if the one was feeding into the other. She gave me many options, made sure I was seeing a therapist regularly, and told me about different drugs, what they did, what their side effects were; she usually prescribes another antidepressant that deals more on the anxiety side, that is a nice compliment to the Wellbutrin, would I like to try it? Additionally we COULD try some energy-producing meds, if I thought that was something I would like to try. She carefully explained all of my options, made her suggestions, and ultimately left it up to me to decide which route I wanted to take.

I didn’t even have an appointment. She won’t get paid for that time, probably. But she made the effort, she called me outside of her office hours, to talk to me and see that I was taken care of. Because she didn’t want me suffering for another month if we could start to do something about it NOW. And this is why I tell people she is amazing. And why I love her. She is one of the most powerful players in my support team and I really don’t know what I’d do without her.

So, without hyperbole and in all seriousness, Dr. Kim Goslin is the mutha-f**kin BOMB.

Difficulty Level: Beginner

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There are things that are more difficult to do now. This is hardly a surprise, it’s a lovely happenstance when your motor neurons burn themselves out and your muscles atrophy. But there are some things it never would have occurred to me would be harder.

Like putting my shoes on. I have no strength in my toes at all, so when I put shoes on, they just kinda curl under when I shove them in. I can’t flex them so set it right, so I have to push on the tops and sides of my shoes once they’re on to get my toes to try to uncurl so I’m not walking on them.

Scrubbing floors is harder, not necessarily because my energy pool is lower, but because I have no muscles in my lower legs anymore so kneeling on the wooden floors hurts. There’s no real padding, so it’s like I’m knocking my bones right on the wood. And then once I’m done with that section of floor, getting up to shift a few feet away is hard because I don’t have the strength to push myself up from a squat, so I crawl on my knees, knock knock knock, and ow. Sucks.

Same for standing a long time. It’s not that my legs don’t have the strength to hold me up as much as it’s the lack of muscles in my feet so I have no padding to protect me. It’s like standing on concrete, even in spongy shoes. After about an hour or so, it’s not that I’m muscle fatigued from walking around, I have to stop because my freakin’ FEET hurt.

I’m also finding it hard to stop short, when walking. My toes have no strength to balance me out. So when I walk up to the elevators, I have to make a lot of little cha-cha steps when I stop in order to not fall over. It’s easier now with the cane, but it’s still weird.

Maneuvering in the hallways at Intel has always been hard. There are a TON of very…..self-involved engineers here. There are the ones looking at their phones walking on a direct collision course with you. There are the ones gathering in clusters right around the corner so you crash into them when you turn. There are the groups of them walking three people across down the halls, leaving you LITERALLY no way to walk around them, so you wind up just standing there, waiting for them to either physically crash into you, or notice you and pull the cluster a little tighter to squeeze by you as you’re hugging the wall.

Walking through work now is like dancing in a minefield. I have to be vigilant at all times because if I get bumped into, I’m going down. I can’t quickly sidestep someone turning the corner too sharply. In the cafe, when someone stops short, I can’t avoid crashing in to them. So I advance cautiously, looking for potential problems, and keep a two person length in front of me at all times. I have become the granny driver of walking in the cafe.

I didn’t foresee any of this. When they tell you that you’re going to lose strength in your legs, you think “walking is going to be harder, going up stairs will be nearly impossible.” You don’t think “I can’t squat down to tie my shoes ever again”. Or any of the things above. It’s a bizarre safari of self discovery, and it’s not even upsetting, not really, not OH WHY ME I CAN’T KNEEL ON THE FLOORS TO SCRUB UP CAT PUKE ANYMORE”, it’s just been, “Huh. Okay. So that doesn’t work anymore.” and working out what to do instead.

Milk crates. Milk crates are what you do instead. Milk crates are my friend. You just park your butt on it, and lean over for scrubbing the floor, or sifting the litterbox, or tying your boots. Milk crates are awesome. They used to be book shelves, then moving boxes, now they’re butt support. Universal problem solvers.

Eventually I won’t have to worry about any of this stuff. I’ll be in a chair, and I’ll just run over the engineers who get in my way. There won’t be a balancing act when stopping short, just brakes. I’ll be sitting when doing the cooking. And the floors…well, someone else will probably have to deal with that. Problem solved for ME, either way. But it’s interesting, finding out these little things that no longer work.