Clinic Day

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!

I guess it does get easier.

Best, easiest breaking of the news so far; ran in to a guy in the cafe who used to be our network guru. He noted the cane I was leaning on.

“What happened, you hurt yourself?”

“Naw, man, Lou Gehrig’s.”

“Oh. …That sucks, I’m sorry.”

“Thanks. I’m alright. How’s the new job?”

“It’s going great! I’m really glad to not be in charge of things anymore.”

And then we dished about network infrastructures and technology and selling houses for ten minutes. And that was all. He asked as we parted if there was anything he could do, I told him I was okay, thanks, but I’d keep him posted. Sometimes the best reaction is just, “Well…shit. Sorry.” and then move on.

Betrayal

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.