The Good Kind of Progress

I met yesterday with my PT specialists and a sales rep to pick out my new wheels. I’m getting one of these!

new wheels!

I opted for the midwheel drive, it’s got a smaller footprint and pivots around corners rather than steering like a car, so it’s easier to drive. I’m still totally gonna run into things. Count on it. I got the USB charging port (instant popularity!) and a cup holder and..yah! I also opted for the seat elevation feature that will let me look people in the face when sitting in the chair, even though insurance is proooooobably not going to cover it. But I think being able to see over tall counters is important.

Tomorrow I start Radicava infusions. The nurse is coming over around 11 to teach me how to do it, and then Friday s/he’ll come back to watch me do it and make sure I learned properly. They’ll also change out the dressing tomorrow, for which I am grateful. It’s itchy.

This has been your baby update.

Fall down, go boom.

I got hit by a car on Saturday.

If I did not have this stupid disease, it would not have happened. I was alerted to the car in time, and had I been able-bodied, I would have been able to blithely move out of the way, probably with an angry yell and discourteous finger gesture at the driver. But instead, I heard J’s dad yell, and looked over to see backup lights on a car I hadn’t realized was even parked there, and tried very hard to get out of the way and failed.

If I had to be hit by a car, this was totally the way to go. It was the gentlest of impacts ever, the equivalent of someone slowly leaning on me until the walker got pushed over and me with it. I scraped up my knee and my elbow, and got a little road rash on my hand. That’s all. The worst part was spilling my breakfast leftovers. J’s dad banged on the trunk of the car to alert her to our presence, which brought her to a stop; if he hadn’t, I’d likely have been hurt worse. The car and my walker traded a little paint, instead of her going over me completely.

The next twenty minutes were a blur of being asked a thousand times if I was hurt, was I sure, did I need an ambulance, was I okay, are you sure. I told them I was basically just pushed over, it was the tiniest of falls, and J’s mom helpfully reminded me it was “just a fall” that broke my ankle. Thanks, mom. The woman who hit me was beside herself with mortification, and made sure she gave me her information just in case the next day I wasn’t feeling okay. She was using someone else’s car, she said, and was used to a backup camera, though I was standing behind and to the right of her parked car; had she used the side mirrors she would have seen me. I can’t fault her too much, though, it is a TERRIBLE parking lot that requires you to drive on the sidewalk to back out. It is exactly the length of a car. So, of course in my brain, it’s perfectly safe to have been standing where I was, because I was on the sidewalk – but to her, I was standing in the driveway in a bit of a blind spot.

I told everyone my main concern was how the hell I was going to get off the ground – there was J, his elderly parents, his elderly aunt, and his cousin who was small. The driver was also a shorter woman, and the bystander who came over to help was similarly small.
Turns out the driver was a paramedic, and we had NO trouble getting me off the ground. I told her it was okay, I was fine, and at least she had a story to tell.

“Are you KIDDING??” she asked incredulously. “I’m not telling ANYONE about this.”

And she probably won’t. She had someone in the car with her, and I wouldn’t be surprised if she swore her to secrecy. A lot of my friends (I love you vindictive, protective people) expressed wishes that she feels guilty FOREVER, and my little brother even offered to “Tonya Harding her”. The guilt she feels is more than adequate punishment I think; as my little brother also said, “backing into a cripple is the same as running over a normal person at a hundred miles an hour.”

Thanks, Justin. <3 The next day, the soreness kicked in; my shoulder's a bit stiff and my lower back apparently got a bit twisted. But still - I get to tell people I was HIT BY A CAR!! and all I came away with was a little soreness and a knee scrape the size of a quarter. This morning I saw the bruise on my hand come through - I dunno if you can see it:

The two slices are from something else. Though, I had a severe shock this morning, looking at my palm, and realizing how much of my hand has completely atrophied. There’s supposed to be a big fat pad at the base of your thumb, and mine is actually concave. I have to use my other hand to hold my fingers open to even look at it. It’s a very strong..I don’t want to say body dysmorphia, since my deformities are real and not perceived..maybe body horror? Unrealism. It’s strange to look at the changes my own body is going through and feel like I’m wearing someone else’s skin sometimes, because that’s NOT how I remember my hands. And yet, they’re mine. Definitely attached to me, only showing physical deterioration of the strength I perceive slipping away.

But anyway. I got hit by a car. I was then reprimanded by my loved ones for hurting myself AGAIN, and specifically admonished to “stop having so many woes and calamities”.

I’m surely trying. I think I’ve filled my quota for the year. My drama card is full of punches, so I think I get a free latte or something. BUT. I’m okay. I got hit by a car and sorta walked away. I’m very lucky.

Broken

As usual, I can’t tell you exactly why it happened, what was the mechanism, only how it happened. I was in the bathroom, turning left at the sink, and I went down. Despite having a death grip on my walker, I fell to my knees with my feet doubled up under me. I’m getting pretty good at falling, but I was immediately aware that Something Was Amiss.

What happened next was a full five minutes of writhing and howling on my bathroom floor while my two cats freaked the fuck out. Now, I have a pain tolerance that has impressed doctors. I developed dry socket after a tooth extraction and was so unreactive when the dentist was packing it, he had to check that I hadn’t passed out. But this? This fucking hurt. There’s a difference in your body, when you’ve hurt yourself versus really fucked something up. A primal signal somewhere in your animal brain of “oh shit we have done it now.” Outside of a few memorable migraines, I’ve never been in so much pain. My stomach was queasy and I was visibly trembling as I tried to sit up, tried to breathe. Shivering. Panicking. Every movement spurred a fresh tirade of wordless howling, one long string of OWWWWWWWWOWOWOWOWWWWWWWWW and I’m honestly surprised that the neighbors didn’t call the police.

…I’m kinda pissed off that they didn’t, if I’m being honest. I know they were home, and I know how well sound travels across our apartments, and the fact that I was yelling myself hoarse (literally) and no one came? Pretty pathetic.

I tried to text J with my SmartWatch O’ Doom, but it told me SMS was unavailable. The shit, watch?? WE WERE SUPPOSED TO BE A TEAM IN EXACTLY THESE SITUATIONS. THIS IS WHY I BOUGHT YOU. I knew I could call him, though, or even 911, with the thing, but I resolved to try to at least give myself a few minutes to breathe and calm down and hopefully the pain would subside enough where I could think straight. I’d call J if I couldn’t get myself off the floor, and text him if I could. OK. Think. Plan. Move. Slowly.

I still don’t know how the FUCK I managed to get myself on my bed. But I did. I messaged J that I’d hurt myself and thought I needed to go to urgent care. My ankle was already puffy, and my poor previously damaged knee was pissed off again. He offered to leave work immediately, but I told him I could wait the 90 minutes for his shift to end. I didn’t think I broke anything, but even if I had, 90 more minutes was not going to make it more broken.

PROTIP: BROKEN LIMBS ARE NOT ACTUALLY LIFE-THREATENING EMERGENCIES. THEY JUST SUCK.

I popped three Advil and waited. The trouble with ALS is that you can’t really inspect yourself for a break – I can’t wiggle my toes on a GOOD day. It felt like a sprain, but I had no real frame of reference as I’d never broken a bone before. Everything still moved, no grinding feeling, it just hurt like hell. I hoped it was just a sprain.

Basically, I was fucked if it was a break. I’m already reaching the end of my ability to get around with a walker. I can’t use crutches, so a cast – or God forbid SURGERY – would pretty much be the end of me walking, ever. It would mean a wheelchair during recovery, after weeks of which I likely wouldn’t be able to get back on my feet. I tried not to think about it too much, and waited. Whatever I did to myself, it was bad, but I optimistically didn’t think it was THAT bad.

J came and got me, he helped me put clothes on (it was a Work From Home day, I don’t put real people clothes on when I don’t have to) and on to the walker so he could push me out to the car. It was about 5:45 when we got to Urgent Care. He got me into one of their wheelchairs and inside, and we waited. They took us back to a tiny little room that wasn’t big enough to turn the wheelchair around in and we waited. They moved us to a bigger room that we COULD turn the wheelchair around in and we waited.

See also: Broken/Sprained Limb = not life threatening emergency.

The doctor finally came in and did the obligatory I AM GOING TO HURT YOU A LOT BY PRESSING AND PULLING ON YOUR HURTY BITS AND ASKING IF IT HURTS torture session. Palpitation damnation! He recommended an x-ray of my ankle, which was turning quite purple by then. He seemed unconcerned about my knee, even though I told him it also hurt a lot and had been previously injured. Luckily, there was an x-ray lab onsite so I was able to get that done right away.

…Well I SAY right away, but the x-rays took forever because I fucking have ALS. Why NO, Nurse, I can NOT stand up on one foot to get on to the x-ray table. And your little 5 foot nothing ass is not going to be much help. Also not helping? Being in so much pain I’ve got cold sweats so my palms are slippery, so it takes like 8 tries . Once we managed to get me on the table, it was still a conversation about no, I can NOT just lift my foot a little to the left. I HAVE ALS MY FEET DO NOT WORK LITERALLY AT ALL. I CAN NOT FLEX MY TOES. I CAN NOT TWIST MY BODY THAT WAY, I CAN NOT ROLL OVER ON MY SIDE WITHOUT A GRAB BAR. FOR MEDICAL PEOPLE YOU SURE AS SHIT ARE NOT CAPABLE OF HANDLING PEOPLE WITH MEDICAL PROBLEMS.

We finally got the images she wanted, and then I was wheeled back to the room to wait some more. The three little Advil I’d taken had worn off their little edge-blur loooong ago.

The doctor returned in a little bit with a printout of my x-ray. “Have you previously injured your ankle?”

Confused. “No?”

He gave me a sympathetic look and handed over the x-ray. “I’m afraid it’s a fracture.” He showed me the little chip of bone that had broken away.

My busted-ass ankle.

FFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCK.

FUCK FUCK FUCK

He started talking, about making an appointment with the orthopedic specialists, about how they would splint it for me tonight in the meantime, how I was to Stay The Hell Off Of It. I asked if I could have some pain killers, maybe? and he said he’d give me a couple of tablets, sure. He left to write it up, telling me that the nurses would be in momentarily.

When we were alone, J asked if I was okay. I’d voiced my concerns about never walking again, and I wasn’t sure. Mostly I just hurt. The supercool nurse assistants came in, splinted and bandaged me up, and brought me the scrip to hand-carry to the pharmacist. I was free to go. We got milkshakes on the way home. J was amazing as usual and got me settled in and medicated and hung out with me for a little while, and then I slept.

Turns out breaking a bone hurts a lot and sleeping doesn’t make that go away. Especially when you need to elevate a limb and oh, what do you know, you have cats that like to stand on high places! WHAT THE SHIT MOLLY. I worked from home a bit the next day, I had lunch with J and my friend Eric when they brought me food, but mostly I slept. I made an appointment with the orthopedic specialists for the next day, to determine the next steps.

That turned out to be a ridiculously short appointment, because there was precisely fuck all we could do about the break, turns out. I had essentially sprained my ankle SO BADLY it pulled a chip of bone away. The chip was too small to screw back in without it disintegrating, so no surgery needed, and the damage was in such a spot that a cast would be useless. I was given a brace that hurts like the devil to wear and told to elevate, ice, medicate, until I felt like I could put weight on it.

I…guess that is the best outcome. I won’t be disabled by surgery or medical equipment, only by my tolerance for pain. For now, I’m mostly kicking it in bed with my foot propped up, mostly weaned off of the Norco, traveling by wheelchair as needed.

Oh. yah. Wheelchair. BECAUSE MY FUCKING WALKER BROKE ON SUNDAY. AAAAAAARRRRRRRRRGH.

The Universe has apparently had it with my shit.

J went out and bought my new one today. I will sticker that bitch up, too. And hopefully, soon, be using it to walk with for a little while longer.

The Week in ALS…

This should probably be a vlog post, but I don’t feel like putting on makeup and sitting in my hot office to record one, so you get a micropost update.

So to sum up:

1) The orthotics appointment for testing various knee braces was stressful and awful. Traffic was horrifying – it took us literally an hour and fifteen minutes to drive a 35 minute distance. When I called to give them a heads-up, she was AWFUL and rude to me, “Well HOW late.” “I don’t really know, maybe five to ten minutes?” “Well where ARE you.” “Two exits away, but traffic is unpredictable.” “I’m going to check with the doctor and make sure that he even has time for you.” I was literally ON the exit when she came back and told me I’d have to reschedule because they really needed EVERY MINUTE of my appointment time to work with me. “How about this. I’m on my way in RIGHT NOW. If I show up too late, I’ll reschedule in person.” When I showed up seven minutes late, they cheerfully had me fill out the paperwork and wait in the office lobby for five minutes. So I guess I’m not allowed to be late, but they can delay all they want.

And then, they had me try on a brace that didn’t help at all, made walking even NOISIER, and when I tried to take them off, I had to shove the velcro between my palms and push them hard together while I pulled at the strap in order to get them unhooked, because my hand strength wasn’t enough. And then they told me that anything sturdier would make sitting and standing nearly impossible, so they have nothing that can help me.

2) Dr. Goslin called and then emailed me yesterday (because I didn’t answer the phone) to tell me that I was disqualified for the new research trial. I did not take it very well; about as hard as I took the initial diagnosis, actually, because it felt like hope for SOME good to come out of this had been pulled out from under me. Again. I spent the entire day sleeping.

3) I woke up this morning still in a funk, and while getting ready for work, I had a fall. Just, knees gave out while I was coming out of the bathroom, and I landed very solidly on the linoleum on my knees like I’d just had a religious revelation. It hurt a LOT, and I resisted crying, but let myself just lay in the bathroom doorway for a little bit while Ianto very nervously sniffed me. Falling and getting up while wearing my braces makes everything suck worse, because it holds my ankles in a fixed and uncomfortable angle while I’m crawling. Usually when I fall at home, the first thing I do is yank my boots off if I’m wearing them, to make getting up easier. But I was already running late.

So, it’s been a terrible week on the ALS front. This is not to say the week has been terrible; I saw my favorite radio play live, with some of my very favorite people, had an awesome Saturday showing off Portland to a friend I hardly ever get to see because she lives far away, and my elderly cat is actually recovering quite well from his sickness. So yay for all those things. Yay.

And now you are updated!

Sometimes Snake Oil is Actual Medicine.

So! I had a follow up with Dr. Goslin about all the things that came up from clinic day, notably meds changes, follow up with the physical therapist, and a general check-in. I found that I had lost 5 pounds, which I am not at all unhappy about. She was unconcerned about that, telling me as usual that maintaining my weight is important; as long as I’m not dropping weight quickly it’s not a problem. Even though I miss being 60 pounds lighter, I suppose that will come in time, and that will be a problem. But until then I am fat and alive.

As far as the physical therapist goes, we didn’t find any braces that helped more than the ones I currently have. Most of them actually exacerbated the problems, particularly on inclines and declines. Instead we’re going to look into some sort of knee brace, as my knees are usually what fails when I fall. We’re thinking some sort of neoprene brace with metal supports; maybe that won’t make it quite so meat-stilty when I walk. We will see. Basically anything that keeps me walking as long as possible is a good thing, in my opinion. Ideally, also not tripping over the cats would be good.

Regarding the meds conversations, we had started me on something to help with the… er.. accidents… And something to may be kickstart the antidepressants again, as they didn’t seem to be doing a whole hell of a lot lately. Lab bladder control made is working out awesomely, we’re going to slightly increase the dosage on that. The other med doesn’t seem to be helping but it also doesn’t seem to be detrimental, so we are going to slightly increase the dosage on that. Maybe we’ll get a reaction. We are also increasing the dosage on Nuvigil, to see if we can’t kickstart my energy levels some more. In that same light, we are decreasing the gabapentin because I’m not sure it’s doing much of anything anymore, and it’s known to cause drowsiness, and I really hate taking something three times a day. Hopefully I can taper off that altogether. The antidepressant kick starter was also prescribed hopefully to reduce the migraines; I haven’t had one in a couple of months and I’m not sure if that’s working, or if it’s just that the Botox is no longer in my system.

Related to the headaches, we had a conversation – again – about the Cefaly device. When she had first talked to me about it, she had explained that she KNOWS that it looks like snake oil and seems super fake. (Seriously so fake.) The science she assured me, was sound and it had potential to be effective. Since then, she had actually tried the device and bought a few for her patients to try; a few of them reported up to 50% fewer migraines. It worked so well that none of her patients have returned it. So she wrote me a prescription for one, and almost $400 later, it should be arriving soon. The crappy part about it is that insurance will not cover it so this was out-of-pocket. Expect future updates when I finally get my hands on it. LIVE FROM THE FUTURE WITH MY SPACE HEADBAND OF MIGRAINES -2 !

We also spoke about medical trials. She hadn’t been able to attend the research symposium, so I told her about my conversation with Dr. Beckman and how frustrated he seems with his complete lack of progress. She shared my sense of dismay and agreed that an actual trial is probably not forthcoming anytime soon. HOWEVER, she told me, there was ANOTHER trial about to start. LITERALLY about to start. Like, in August. She was positively geeking out about the potential for this trial, super excited about the potential, and in fact said she felt BETTER about this than the copper trial. It’s centered on inflammatory behavior with ALS degeneration; previous trials had stopped the progression of ALS in patients with those inflammatory markers while they were taking this drug. Only 35 percents of ALS patients have those markers, though. It’s an IV administered drug, and a six-month trial; I think she said five visits for the first two months and three visits a month for the rest of the duration. I’m not exactly sure what it entails in detail, but I suppose I shall find out if I am selected for this trial. Because of course when she asked if I was interested, I said HELL YES. The trial coordinator is supposed to be giving me a call very soon to give me more information and arrange to have me tested to see if I have those markers.

So THAT’S exciting.

She also suggested, which in retrospect seems OBVIOUS, that I go to the physical therapist to learn how to fall gracefully, and how to get back up. It’s the getting back up that’s the problem, usually. So I’m going to go do that. Soon. In the meantime she gave me materials about various “med alert” type devices. Which, I realize I really SHOULD be looking into, but every time I think about it, the phrase “I’ve fallen and I can’t get up” also goes through my head. It’s one of those stupid associations, one of those steps that feels like surrender, no matter how practical and ultimately necessary it may be. I’m working on getting over that.

So that’s the haps. You are now fully updated. I’ll make a goofy video once I get the Cefaly. I’m sorry I haven’t been updating lately, the world those outside and inside has been in that sees stupid, dramatic, and sad. So I’ve been in full out capital avoidant mode, sitting in bed with my cats eating candy and watching nature TV. It’s so much easier.

I hope life is treating you kind. I hope you are safe, and happy.. And I hope it stays that way.

Bathroom Stall Barre Class

Part of New Normal is developing new rituals and processes for stuff you never even thought about. You just do it, you don’t think about it, until you can’t do it, and then one day you’re sitting there and realize how strange it is, to have to do what you do now to do the thing you did without even thinking before. You can’t remember creating that ritual and routine, it just organically developed when you lost the ability to do it the ‘normal’ way. One day you realize you’re sort of dancing in place to remain upright because you’ve lost the ability to stand still without losing your balance. One day you realize you’re gripping the fork like a savage because your hands cramp if you hold it like a human.

One day I realized I use my head as a fifth limb.

…Like, all the time.

How? What? Well you know how when you’re done in the bathroom, you just kinda clean up, and move on? Pants up, flush, wash hands, leave? Well let me walk you through the steps, my friends, the Dance of the Public Restroom that I now realize I do.

Step 1) Do the thing like you do, clean up, like normal.

Step 2) Do they have bars? I hope there’s bars. There are. Grip those bad boys and haul yourself to your feet. Bonus point for restrooms NOT designed by imbeciles, like the one downstairs at work where they put the toilet paper dispenser RIGHT where your elbow hits if you use the bar to pull yourself up, hitting your funnybone if you’re lucky and hitting your funnybone AND scraping skin off your elbow with the sharp little cutty edge for ripping the paper off the roll if you’re unlucky. Bonus BONUS points if they did not put the ‘feminine product’ bin EXACTLY where your knee hits it when you try to stand.

Step 3) Don’t fall over.

Step 4) I’m serious, don’t fall over.

Step 5) Using the bar with one hand, swivel your body to face the wall, flush the toilet.

Step 6) Press your head against the wall so you can have that point of balance while both hands reach down to pull up your underwear.

Step 7) Don’t get your panties caught on the cuff of your braces.

Step 8) Grab the bar with your right hand, and lean to the left to extract your panties from being caught on the cuff of your braces.

Step 9) Resume head-to-wall balance and pull panties on properly.

Step 10) Sigh heavily, get your breath back, cause we’re going back in. Head to wall a little lower, scootch your feet back a little so you can reach down further without falling over, and grab the waist of your pants with both hands.

Step 11) Don’t get those caught on your braces either.

Step 12) Did you seriously step on the cuff of your pants when you stepped backwards in Step 10? Really?

Step 13) Hold on to the bar with one hand and try to babystep off of the cuff of your jeans without falling over. Good job.

Step 14) Pull pants up with both hands.

Step 15) With your head against the wall still, do a little turn, so that your back is now against the wall, and hope that leaning against the wall didn’t pop the door open. Try to forget how many times that’s happened to you.

Step 16) Button your pants.

Step 17) It’s okay, sometimes it takes more than one try, button your pants.

Step 18) Seriously relax, deep breath, try one more time. There.

Step 19) Zip up. Don’t fall over.

Step 20) Grab your cane, unlock the stall, and go wash your hands.

Step 21) (OPTIONAL) Lean against the bathroom sink for balance while washing your hands and get water all over yourself at around crotch level because some jerk got water all over the counter and didn’t wipe it up. Seriously this is a sink, not a birdbath, how did they even splash so much?

That’s it! You’re done! Now use hand sanitizer on your cane handle cause you touched that with your dirty bathroom hands. Gross.

Quick – What’s the Best Thing You Ever Bought?

That snazzy awesome dream car you always wanted?

The engagement ring for the girl of your dreams? (She said yes!)

Little Timmy’s life-saving surgery?

WRONG.

It’s this.

NEW BED OMG

Not the bedding, obvs, I paid for that. THE BED. THIS IS MY NEW BED GUYS. You press buttons and it quietly goes “click” “vrrrr” and then it MOVES. I don’t have to make a nest out of pillows and blankets to sit up! It just DOES THIS THING. And then you lie in it and then it’s like the comfiest quicksand where you just kinda siiiiiiiiiiiink in and ahhhhhhhh.

And I can GET UP OUT OF THE THING.

FURTHERMORE, and most importantly, it is IANTO-APPROVED ™.

I suppose you want the deets (that is Street Talk for ‘details’ because I am hip and cool with the electric youths), wellllllll it is a Tempur-pedic Premier base (the part that goes clickvrr) and a Serta Prodigy Everfeel Plush Firm mattress (the part that goes siiiiiiiiink-ahhhhhhh). You guys saved a bundle on it from my Mad Hookups with Jen at Sleep Train (the kids still say Mad Hookups right? Or does that refer to the sexxings now? I get confused, slang changes so fast) and it is SURELY THE BEST THING YOU EVER BOUGHT.

For real yo.

Thank you. So very very very much.

It’s a little too high to sit on and get dressed, which was easily remedied by putting my old desk chair next to the bed which ALSO serves for allowing my geriatric cat to get up. Parked next to my milkcrate night stand, yeah it looks a little ghetto but I SWEAR I am getting some real furniture for there now that I know how tall the bed is. I spent all day in it yesterday, literally, except for going out to dinner with J while some kid outside the restaurant got arrested for public intoxication while his winner friends continued to drink and pretend not to know him. But other than that I was in that marvelous bed, working from home, cuddling with cats. The botox injections for the headaches are REALLY not working out, so I’ve had nasty headaches which are not allowing me to fully appreciate the massagey functions yet, but FULL REPORTS ON THAT WHEN THAT IS REMEDIED.

OK.

Thanks for the peaceful space to sleep, my ninjas. You’re awesome. Even more awesome than the bed IF THAT IS EVEN POSSIBLE.

Ianto Approved (tm)

Resting Easy

It’s really hard to get out of bed.

To be sure, this has ALWAYS been true. I like sleep, more than I like anything else. I find it hard to convince myself to get out of bed even to do things I like to do, because bed is comfy and warm and there are cats there. Bed understands me.

But what I ACTUALLY mean is that it is now physically hard to get my ass out of bed. No leg strength to push out of bed with, nothing to grab on to and pull myself out, a 22 year old cat that absolutely INSISTS that he needs to be on me, on my chest specifically, pinning me down, and all this equals me flailing in the morning like a turned-over turtle to get myself upright. It’s not dignified, or pretty. Probably hilarious though, for the first couple of minutes until you realize why it’s hard and then you get sad and hate yourself a little for laughing at me, you unfeeling jerks. Erm. Sidetracked. I mean, getting out of bed is becoming a herculean physical challenge, when I already emotionally and mentally don’t wanna.

And this, my dear, wonderful people, is where you came in.

My main babe Danielle had set up a Crowdrise account for me. You might remember that; it’s over there on the right. It was set up to collect funds against helping me with affording things related to my disability and bucket list. And now the money, money that YOU have so amazingly, kindly donated, money that Danielle worked very hard to raise on my behalf, has gone to buy me the most amazing bed ever. One of those awesome Old People lifty-adjustey-even-has-a-massage-function beds. To top it all off, my friend Jenn happens to be a sales manager at Sleep Train and got me this amazing, jaw droppingly good deal on the whole thing. I don’t know how much this normally costs, but I know I’ve got this bed for a STEAL. It’s going to help me SO MUCH. And when getting out of bed on my own is no longer an option, it’s going to be a VERY nice place to hang out with my cats.

They deliver it Monday. I’m beyond excited.

And I am so, so, so grateful to all of you for making this possible for me. This is going to be such a great help. And every night, when I lower the head of the bed to sleep and turn on the massagey function, I will think of all of the people who loved me enough to make it happen, and I will dream the sweetest, most grateful dreams.

Thank you.

ALS:FTS Video Blog Thingy Numba Seven: EXCITING NEWS YO

Clinic Day! Also, should you send me that article about ALS? (Spoiler alert: yes you should) Promising research! How my disease is progressing. And some VERY EXCITING NEWS. Like, I am nearly in tears for pretty much this entire video because I am going to lose my shit I swear to God you guys.

Attention Developers!

So, you can now totally play with Stephen Hawking’s voice software:

You Can Now Use Stephen Hawking’s Speech Software for Free

I really, really hope the world takes this and does amazing things. The best and brightest technology always finds its best use in the hands of public developers, so many amazing things created that were not even THOUGHT of by the device creators. If you couldn’t tell, I’m a huge fan of open source, and I’m an ardent worshipper of public projects. Someone out there has something brilliant to make, someone can take this software and make it do something so far advanced we never even CONSIDERED that it was possible. Someone is going to take this tool kit and make ALS so much easier to deal with we’re going to wonder how we did without it in the first place, and I’m waiting.

Let’s make something cool.

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!

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.

Phrasing

We went to lunch today, my friend and I, and an elderly woman with a cane was leaving the restaurant as we were entering. She saw mine, and good-naturedly welcomed me to the Cane Club. Her companion, an elderly man also with a cane, came through the door as my friend held it for him. “He’s had his for 2 years, I’ve had mine for one.”

“I’m coming on I think nine months,” I told her, smiling.

“I see so many young people with them lately,” she lamented, kindly. “It’s a terrible shame. I really hope you’re done with yours soon.”

“I will be,” I nodded and assured her, “eventually.”

And I walked in to the restaurant, my friend was slightly flummoxed. “That’s uh…a different way to look at it.”

“Was I wrong?” I demanded, laughing. “I didn’t LIE.”

“….No. No you did not,” he conceded.

Sometimes it’s just in how you phrase things.

Strong enough for a man

Things that should be gender-specific:

Medical Care
Supportive Undergarments

Things that should not be gender-specific:

Hammers
Water bottles
Pocky
Writing utensils

….actually come to think of it, those first two things are probably an all-inclusive list. All else is unisex. Unigender. Pangender? Social awareness is hard.

PSA, MARKETING IDIOTS: WOMEN DO NOT NEED SPECIAL PINK TOOLBOXES FOR OUR DAINTY WOMEN HANDS. I have ALS but I can punch you in the jimmies just as well as a man can. For now. And when I can’t? I’ll have Danielle do it. And she can hit like a truck, man. You do not want this.

What does this have to do with ALS? Not much. I was looking at knee braces just now and they have ones “for women” that look exactly like the ones that are just “knee braces”. And they’re the same. Only pink. Sometimes? Yes, medical gear needs to be gender specific. But my knee is built like any dude’s knee. Well, originally, anyway, or I wouldn’t need a knee brace I suppose. And so this turned in to this post, which you have just wasted precious minutes of your life reading.

You’re welcome.

Awww yeah, she’s a Sleep Machine!

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

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.

Bathroom Bitching

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.