Stabbity Stab Stab

One thing I love about being one of Dr. Goslin’s goslings is that she is super, wicked smart and stays on top of the latest research. Any time someone sends me an article about some new breakthrough or other, I am completely confident that she has already seen it and researched it to pieces. The upshot of this is that, when she suggests I try something, I know it’s a very well-considered proposal.

In our last Clinic Day, she told me about this article. Massive megadoses of B12 have been tentatively shown to maybe possibly potentially help with some of ALS’ stupid symptoms. She gave me the article, asked me to mull it over, and let her know if I’d like to try it.

Roadblock number one? Insurance won’t cover it. She told me it ran between $250 – $300. I could either get it in a vial with needles, or pre-filled needles, for more dollars. Now, I can manage to afford that now, while I’m unemployed, but when I’m not? Sucks to be me, if it works. I had me a nice angry meltdown on facebook about how stupid that is, sulked, and researched some more. My friends assured me that if it worked, they’d help me fundraise to get it, so don’t let that stop me.

Roadblock number two? Self. Administered. Intra. Muscular. Injections. Now, I’m tattooed, have multiple piercings, I am in NO fear of needles. But I didn’t know that I’d have the nerve to stab myself every day in the thigh. In the morning! And then there was the problems of mechanics, having enough hand control to push the plunger in. So, a mental AND physical challenge.

I decided to try; they recommend one month at least. I decided to go for it all three months until next Clinic, and I’ll likely still be employed all that time to afford it. I sent Dr. Goslin an email, she gave me the prescription, and thus began the Wacky Comedy of Errors. Holy crap.

First of all, only several pharmacies compound the stuff. For some perspective, the average over-the-counter supplement is 2.4 micrograms. This injection is 25 MILLIGRAMS. That is more than TEN THOUSAND TIMES the dose. Understandably, there’s a limited number of folks who make it that strong. So I had to *gulp* CALL A PHARMACY. IN PERSON. They got the prescription from Dr. Goslin. Then they called me to get my personal information. Then they called me back with pricing. A vial of it would run me $215, plus $30 shipping because it has to be kept refigerated and mailed cold. Oh. But they can’t ship it to Oregon; they’re not licensed to ship there, did I know someone in California or somewhere I could have them ship to, who could forward it to me? For another whatever-it-costs for overnight shipping to keep it cold? LUCKILY I have my dear friend Amanda in Vancouver, which is not so far away, and she was happy to recieve the package on my behalf AND dose it out into the syringes for me. Two days later, she got my vitamins.

With no syringes.

No big deal, she went to a pharmacy. …Who would not sell her any without a prescription. They gave her 4, though, so I could get started while I waited over the weekend for my doctor to send in a prescription. Doc Goslin was in a conference, turns out, so she turned the task over to her nurse, who mistook the instructions and sent in a scrip as though the injections were WEEKLY, so they only gave me 11. And to the wrong pharmacy, but that wasn’t her fault, DocGos didn’t tell her that part of my request. So I sent in an email to get it corrected and to the right pharmacy, only insurance now wouldn’t cover it because I was trying to fill the scrip too soon. You’d think the fucking things already have heroin in them, with how hard it’s been to get hold of some. FINALLY we’ve got it sorted and I can go pick up the rest of them tomorrow.

Theoretically.

I started the shots a week ago. You have to keep it refrigerated, take the shot out of the fridge 20 minutes prior to administration, and keep it in a dark place while it waits, because B12 is light-sensitive. And THEN you may stab yourself. It took a couple of tries, mind you. 1mL is a LOT of liquid to get in there. The initial stab isn’t bad, unless I hit a nerve, but sometimes it takes some doing to get the plunger all the way in. And sometimes some of the liquid comes back out when I withdraw the needle, which sucks because it’s a blood red liquid that stains. I was warned that it gets metabolized quickly, and I’ll pass whatever doesn’t get readily absorbed, so my urine miiiiiight turn reddish or pink.

It totally does. So, thanks for the warning.

I haven’t noticed a difference in anything yet. I’m still experimenting with where to do the injection, as there’s not a LOT of muscle left in my thighs, and it’s blanketed with fat. Shooting my bicep though, feels like an immunization shot and leaves my arm sore all day. I’m sure it will get easier. It’s still taking one or two false starts before I manage to work up the nerve to stab myself though.

I’m not sure what I’m hoping for, with this. If it does something, then I’m tethered to $245 payments a month out of pocket. And eventually finding someone to stab me with a needle every day. If it doesn’t, then I’ll be out a lot of money with nothing but soiled cupcake band-aids and self inflicted puncture marks to show for it. I mean, of COURSE I’d like it to do something, even if it does mean weighing the pros and cons of perceived improvement vs. cost and hassle.

I guess I’m just saying, this disease complicates everything. At all times. For everyone. It really SHOULD come with a secretary and a kitten.

And someone to do the shots for me.

Bruising for a Cruising

Okay, I have to tell you about this stupid thing that happened, because then I can focus on the good parts, and also tell you something good that came of it all.

TL;DR: ALS RUINS EVERYTHING EXCEPT MAYBE DRAMATIC ENTRANCES.

So, I went on a cruise. I’d arbitrarily decided I wanted to do that, last year, as a bucket list thing. Cruises seemed cool, and at the time I was envisioning myself spending a week on the ocean, cruising to Alaska, taking the time to mentally collect myself and write all of my goodbye letters and look at the water. My friend Beth has been trying to get me to go on this one geeky cruise, but it was in Mexico and I’m not a tropical person. At all. And then, well, my hands stopped working so well, so it was less important that I have all the alone time, and then the geek cruise announced that Zoe Keating was going to be one of the performers and suddenly I am going on that fucking cruise, you’d better believe it.

It’s this one: https://jococruise.com/

One week of music and comedy and geekery. Puce, Lance, and Tam came with me, and we were gonna have a hell of a time and I was going to work up the nerve to say hello and thank you to Zoe Keating, and I was going to look at the water for hours and maybe have a cocktail and perhaps see a whale. And I did all those things and so so so many more. It was incredible.

…Except for this one thing.

From the start, I had concerns about accessibility. I can’t do without the walker, these days. I use a cane to get from the car to the grocery store where I can use a cart to lean on, or I’m using my walker. I wasn’t terribly concerned about the ship itself, though, I mean, these things are practically built for old people, right? I had a quick look at the cabin floor plan and realized with one week to go until the cruise that the bathroom was not even a little bit accessible. I sent a very apologetic and frantic email to the amazing planner people, who totally came through and switched me to an accessible cabin with grab bars and everything and it was all saved and glorious! (HOORAY FOR THO) ..Except for the shore excursions, I was still wary of them. Now, I realize fully well that the A in ADA is for Americans, and the rest of the world is not exactly accessible, which is why I’ve become reluctant to do a lot of traveling. But I completely intended to make do, so long as they could get me to shore, which they promised they could. And I tentatively believed them and didn’t worry about it at all until the day before the first one.

We were going to stop for the most of a day in Cabo. Unfortunately, there was a thing on the ship I wanted to do, right in the middle of the day, so we stopped by the front desk to ask how the disembarking would go down, to see if the hassle was going to be worth it for just a couple of hours. The town was too small to dock in, so they were offloading people by tender, which is a small boat, the woman with a delightful German accent explained. There wasn’t a rail, and there was a small gap between the ship and the tender that would wobble with the waves. Due to liability issues, they could not carry me in, but there were people on both sides to give me a hand. She assured me it would probably be fine. I had my doubts.

We skipped Cabo, and the event I wanted to go to was postponed til Friday, so I wound up spending the whole day on the ship, drinking fake mojitos and staring at the water and having a nap. SO HORRIBLE, YOU GUYS, SUCH MISERY WOW. CRUISES ARE THE WORST. The next day was Loreto, though, and not only a local food festival but an all night concert (Ted Leo will indeed rock your face off, so there was no way I was missing that). I vowed to get my ass ashore and do some sightseeing come Hell or high water – and yes the irony of that is not at all lost on me. The morning came, and so did my apprehension. Again, too small to dock so we were using tenders to get ashore. Lance went to the launch site to see how hard it would be to get me on the boat, and he assured me that it was a little gap, the water was calm, easy-peasy. They’d be there the whole time to help, and I knew they absolutely would. It wound up truly not being that difficult, even though I can’t step up a curb anymore, just a little gap and a lot of helping hands. HOORAY FOR THAT.

The ride to the port was nausea inducing, and the dock we wound up in was basically a narrow-ass pier maybe five feet wide, and then a steep as shit ramp to get up to the port. We had to step down from the tender using two wooden boxes made into stairs and yeah, you THINK you already know where this is going, but NO. I made it down the steps just fine with a lot of help from the crew and my friends, and walked across the narrow pier with no problems, and up the steep ramp without falling. You doubters. We made it to the city and looked around; it took forever for me because hey! No proper sidewalks and steep hills and cobblestone streets! Lance and Tam split off from Puce and I to do some shopping, while we looked at an ancient mission church and its museum of artifacts.

And then shit went sideways…literally. Without going into detail, I fell out of the walker and skinned the bejeesus out of my knees. As usual, the worst part was the strangers. It was right in the middle of the road, in front of a restaurant, so everybody and their mother pretended not to be watching but still managed to stare as we tried to get me up. A well meaning couple helped Puce out, and then overstayed their thanks by over-analyzing why I fell and how to prevent it from ever happening again while Puce and I both repeated YES THANK YOU and tried to move the fuck on with our lives. We limped to an ice cream shop, where I ate delicious ice cream from my childhood while trying to forget that it happened. Remarkably, my tights weren’t ruined, it turned out. Hooray! The day was not completely obliterated, but we agreed it should probably be a short day.

We did the food festival, delicious! and then stayed for the first act when the concert started. We decided to head back to the ship while there was still light to see. I was pretty wiped out by this point, but luckily there were taxis provided by the cruise organizers to get me back to the pier. And….again, I know what ADA stands for, but the van that showed up had a wheelchair symbol on it and yet was the most un-accessible van ever. He helpfully provided a little stepstool for me to get up into the seat with…which was a complete waste of effort because I don’t have the strength to lift my foot up that high to get ON the stool, much less step up with it into the the van. I managed, but it was not pretty and my tights were falling off by the time I was onboard. I discreetly hitched them back up when we got to the dock, I walked so, so carefully down that steep-ass ramp, navigated the narrow pier to the boat…

..and swore a lot because I’d completely forgotten about the fucking steps up to the boat.

Now, I can do a couple of steps if there is a sold handrail, because it’s basically using my arms to haul myself up. Without a hand rail, though, it’s fucking impossible. I quailed, but Puce assured me we would get this done. The diminutive crew took my walker on board, and then I slung my arm over Puce’s shoulder to try the steps. It failed instantly, and completely. I couldn’t help him get me up at all; I couldn’t lift my foot even, on to the first step. The crew tried to help, but they were small Asiatic men trying to assist a fat American giantess, and they were completely ineffective beside grabbing me under my arms and trying to put my feet on the stairs as though the only problem was getting my foot to touch the step. I asked to be allowed to sit for a moment, to catch my breath and rethink the problem. It took them all too much time to understand, this isn’t working, let me go.

I looked around, trying to think of a plan, and not allow myself to become a quivering, humiliated mass of tears. I noticed a line of people behind us and tried not to look at their faces. I noticed a cute girl with pink hair watching, similarly trying to think how to help. And then I noticed Anne Wheaton, one of the cruise’s celebrity guests. You probably would know her best as Wil Wheaton(the kid from Star Trek)’s wife, but she’s a geek in her own right and a fellow believer in the amazing power of googly eyes (for real though, google VandalEyes; the woman is one of my heroes) and was on the cruise doing a reading from her upcoming book. And she was watching me struggle with these ghetto-ass stairs on this unstable-ass boat and these little dudes hurting me while trying to help and I really, truly, just wanted to slip into the water and never come up. But that wasn’t an option.

I had just decided that the easiest thing would be to haul myself on to the boat and crawl over to the bench on my skinned knees like a fucking animal because surely my dignity could only suffer more if I managed to piss myself as well. That’s when the pink haired woman stood up and offered to help, assuring me that she was quite strong. I waved her off once, announcing that it was probably easier if I just crawled, but she repeated her claim of strength and voluntold another man to help her and Puce pick me up. I accepted with as much grace as I could pretend to have. Carrying 230 pounds of dead weight up what are effectively rickety fruit crates and on to a narrow moving boat is not an easy task. I think 8 people at one time were helping me, swiveling me successfully into a bench, and I tried to crawl inside my own skin as everyone else filed on board. Puce was amazingly supportive as always, and silently offered support while we rode back to the ship as I silently prayed for everyone to please forget this whole thing, and did my best to not completely lose my shit until I was alone. The pink haired cutie stayed behind to make sure I was able to get off the tender okay, and of course I could as there were no stairs involved. I thanked her a dozen times, we got back to our cabin, and I cried a lot.

I spent the rest of the cruise fervently pretending that the whole thing hadn’t happened. I had bruises under both my arms, my ego was shattered, but goddammit I had a good time for the rest of the trip pretending I hadn’t made a complete spectacle of myself in front of a boat full of strangers and Anne Wheaton. I mentally chalked it up as a lame-ass claim to fame and joked internally that she’d probably never forget the trip, for damn sure. And managed to forget it, mostly, specially when I got home. I knew I’d probably blog about it, but hopefully in a not-depressing way and try to find some positive angle on the whole ordeal, cause that’s how I fucking roll.

I’m off work for sabbatical now, so I slept late Monday. When I woke up, Puce asked me if I’d been on Facebook yet. That’s…never a good sign. I told him no, mentally wondering who died. He said I should check, and I got nervous and asked what was up. He asked if I wanted to find out myself, or should he tell me, and I didn’t feel like sorting through a time bomb of a timeline, and maybe Facebook’s stupid algorithms wouldn’t even decide to show me what he was talking about at all, anyway. I told him to tell me.

“So…………Will Wheaton’s wife posted to the JoCo Sea Monkey 2017 group about your…incident. It’s very nice, and sweet, and depressing…but she still posted about it, basically to give you support.”

FFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCCCCK.

“Then Beth went and tagged you in comments.”

FFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU

OK. Breathe. It’s cool. No big deal. It’s cool. Public humiliation part two. OH MY GOD THIS IS NEVER GOING TO GO AWAY IS IT. I braced myself for the worst and checked the group. And the post was obvious.

“To the young Sea Monkey who was using a walker on the cruise-”

Wincing, I read her account of the incident, mortified that my emotions were so transparent and I was completely casting a shadow on what should have been an awesome night. I hate that my disease is depressing as hell to everyone around me. I try to keep my shit in check for this reason alone. “What I wanted to do was get up and come over to you to tell you not to feel stupid for your body failing you, but it’s not my place to tell you how to feel,” she wrote.

..Holy fuck, this woman gets it, I thought in surprise. Being told not to feel dumb or weak or sad is never helpful. It makes me angry, if anything. And she understood, and elected not to intrude on my struggle like some Feel Good Fairy Godmother with useless words of non-comfort. I wanted to hug her for that. She continued to tell me that she noticed that not one person behind us waiting to get on the boat was irritated or impatient, just standing by not knowing how to help. And..I was relieved. And instantly didn’t mind at all that she posted this story semi-publicly. Was grateful, even. Because of course my brain told me that everyone was watching, feeling sorry or being mad that I was Officially Ruining Everything. She understood how I felt enough to make a point to tell me this. Which was amazing. She gracefully relieved me of any obligation to respond or identify myself, and concluded:

“Just remember, you are not your body. You are an incredible human being facing a really shitty situation who chose to go on a cruise and live life to the fullest. You are an example of perseverance we should all be so lucky to witness.”

I’m…not entirely sure that’s so, of course. I’m just some dumb girl with a fucking ridiculous disease that ruins everything. I didn’t really decide to go despite my disease. Zoe was gonna be there and thus, so was I. The end. But Anne’s words were amazing and timely as shit and I felt immediately better about the whole thing, and I replied with a simple thanks on the post but sent her a more detailed reply in a Facebook message, including a request to pass my thanks to her pink-haired rescue goddess friend who was indeed super strong. She told me why it hit her so hard, and hoped I’d be back next year. I told her I’d like that, but maybe I’d skip the port of call next time (heh), and asked if I could use her words when I inevitably posted about this whole thing. She said okay and she’d be sure to pass on my regards.

And now I have. So, a super shitty thing happened, but as usual, there was a moment of grace in it that gives the incident some worth. I’m only sorry I didn’t get to hear this from her in person so I could hug her. And then show her the googly eyes on my JoCo badge.

I’m still alive.

I have a lot to say, but not a lot of it is good, so I tend to not want to talk about it. Some days just suck. I’ve been in a state of..depression is not quite right, more like barely contained terrified panic, since the election. It just keeps getting worse. Thank you, everyone who voted Republican, for voting to repeal the Affordable Care Act, so I’m not entirely certain I’m going to have medical coverage when I’m forced to leave my job, because I have one hell of a pre-existing condition.

I had clinic recently, not much to report. Same decline, my hands are getting worse, swallowing and breathing are still normal.

My 23 year old cat is dying, and I feel like I want to, too, when I think about it. I’ve known him for more than half my life.

Christmas was…good and bad. I’ve had more falls lately.

That’s the baby update. There will be more; I have a lot to say and I promise to say it soon.

Dealing with (cat) Shit

I suck at asking for help.

I know, you all are alerting the media right now. OH MY GOD REALLY!? DID YOU ALSO KNOW THAT WATER IS WET? IT IS TRUE!!

I’m getting better at it I swear. I will give the soda bottle one good try and then hand it over to someone for opening. I allowed friends to help with cleaning my apartment. I’ve brought jewelry out to the car on our way somewhere, for J to help me put it on rather than just not wearing it. I trust folks to help me up a curb without feeling like I’m going to pull us both down to the ground. It’s hard, and it’s definitely going to be a continuous work in progress until I no longer have the OPTION but to let people help, but there are definitely areas that I have a harder time with than others.

Like the cat box.

I don’t know why that’s such a trigger. Because it’s gross? Because my cats are not technically part of ME and so admitting I need help caring for them when they are not a medical necessity seems …frivolous? Even though I would literally rather die in a house full of shit than live without them? Because my cat Parmesan is 22 years old and shits wherever he wants and right now my front room is so absolutely goddamned GROSS that I am mortified at the thought of someone else having to deal with it?

But I have to.

I got a notice of inspection when I came home Tuesday; they’re coming in to check the fire alarms. No big deal. But yesterday I had to clean the cat box area, because that’s the first thing you see (and smell) when you come in to my apartment, and it needed doing. I’ve got puppy pads spread out all over my dining area, because Parmesan does what he wants and I can’t stop him and I love him enough that it’s a price I will pay for his company. The carpet is …unhappy with its lot in life, at this point. And that’s a fair part of why I had laminate floors in my house, because once a cat pees on something it is RUINED FOREVER. AND EVER. Cat owners know this. No amount of Nature’s Miracle will ever completely get rid of the smell. And so I just lay out the puppy pads so that hopefully Parm pees on them and then Ianto will NOT try to bury it and drag them all over the place trying to scratch over it, exposing the carpet where Parm will inevitably pee again. J steam cleaned the carpet not long ago, but it needs doing again. Until then, the spotbot and puppy pads will have to do. It’s not easy for me to do this, because I can’t just bend down to pick up the soiled pads, and crouch down to scoop the box. I have to get on the floor, which is less like “getting down on the floor” and more like “a controlled fall”. Then, pulling out the tray from the litter robot (SERIOUSLY BEST THING EVER), replacing the bag, collect all the pads, put out new ones, scoop out the other box, somehow get up off the floor, heft the heavy bag of used litter into the trash can, and then put it outside.

It didn’t used to be a huge production. Twenty minutes, tops.

Last night demonstrated that I can’t do this anymore. I couldn’t carry the water tanks for the spotbot without dropping them. I couldn’t effectively scoop out the boxes. I had the worst time opening and levering a box of cat litter to refresh the boxes. My hands wouldn’t uncurl after grasping the puppy pads. I had to use two hands to spread them out instead of the casual flick it used to take. I almost was unable to get off the floor when I was done, and I was out of breath and dripping sweat.

I can’t do this anymore.

I had a really, really hard time telling myself this last night, as I cleaned myself up and waited to stop sweating. And I don’t know why I’m so stubborn about this, but it seemed like it was the end of all things. I know it’s not. I’ve had friends volunteer, cheerfully, to come over and help with the cat boxes. It just seems like a special brand of failure, to no longer be able to do this. When I adopted my cats, I promised to love them for all time, and to be responsible for their care. I feel like I’m failing them at it. I am losing the ability to give them head skritches, to play with them, and to give them a sanitary place to do their thing. And it’s the worst. I am failing at Cat Mom, and it bothers the fuck out of me.

I’m not dealing gracefully with this at all.

FORTIFY

on top of gravity:
I asked one of my (male) friends to stop using the phrase “man up” and he has been using “fortify” for the past two weeks instead and it’s just a little thing but honestly it makes a difference
and tbh it’s also pretty funny when I start to deflate in the library and he leans over and goes “FORTIFY”

Seriously try that. J and I use it now and it’s awesome. Sometimes when I’m whining, even though he knows I have every right to (CENTER CIRCLE, BITCHES), he will just grin and shrug and say, “Fortify.” And I will flip him off the best I can, and we laugh and go about our lives.

There will be a real post soon – I know I keep telling you this. But Monday is Clinic Day so there will be lots to report on that front. Meantime I thought I’d check in with just a quick thing about the weekend.

It wasn’t particularly kind, if I’m being honest, but there were moments of goodness interspersed, for certain. I mean, it started with a road trip to Olympia to see a black metal show. How is that not awesome? I’m not generally in to black metal, but Wolves in the Throne Room are an exception. They’re not so much Black Metal as…Black Folk? It’s more melodic than the usual stuff, and they have been properly described as “atmospheric black metal”. None of the cheesy SATAN666OMG stuff. I like it. It was two and a half hours away, on a school night, and the venue was this ADORABLE little place that served surprisingly delicious food and had the cutest waitstaff OMG and delightful bathroom graffiti (next to the signs that declared said bathrooms to be transgender friendly, use whatever restroom coordinates with your identity, and if someone gives you a problem, please report their asses and they will fix it). The music of course, was WAY too loud for the small room, and the geniuses decided that a smoke machine was a good idea so I spent some time breathing through my shirt, and then some jackass decided that you know what this concert needs? For me to blaze up in this tiny room.

So yeah I had a headache.

The show was awesome though, a dear friend in Seattle had joined us, and the opening act was every cheesy stereotype I could hope it to be, including announcing themselves in a Cookie Monster voice “WE ARE BLACK! FUCKING! CANCERRRRRRRRRRRRRRRRR!” And yet, the whole time I was listening, I was so tired I felt like I could fall asleep any minute. Even with Cookie Monster screaming about forests or satan or whatever. I don’t know what the hell that band was about. We got home around 4, because the show was an hour late to open, and had 3 bands, and was two and a half hours from home. I had wisely taken the next day off. I slept until like..3, and then took a nap, and then went to bed early. Working all day and then car ride and then socials and everything was way too much and I was DONE for the whole day.

Saturday I FINALLY got my Fallout 4 install working. I’d had to reinstall my operating system, so everything is cattywampus still, and I hadn’t played in forever because getting everything how I like it was just too daunting most of the time. So I finally got all my add-ins working, got it set up for use in the bedroom so I can lounge and play, annnnnnnnnnnnnnnnnnd…..discovered my hands don’t work well enough to play on the wireless keyboard anymore. My left ring finger seriously droops, and that’s the finger that controls moving LEFT, soooo….unplayable. I tried for a little bit and gave up. I’m going to have to get a controller. Which SUCKS because I am totally a mouse/keyboard gamer.

Sunday I had a friend come over to help me around the apartment. AGAIN – people just…show up! And do cool things! And the hardest part is always just LETTING them help. I’m so grateful I can never even HOPE to say how much. While I was shifting some things around for her arrival, I had a fall. Not a bad one at all, just…wound up on my butt. I got up with little difficulty and went about my day. I continued to think about it, but it didn’t really upset me or hurt me. Just, whoops, on the floor. Get up, move on.

That evening we went to dinner with Gecko for his birthday, and we did Brazil Grill. If you’re not familiar with the place, you sit at a table, and they bring huge hunks of meat around on swords. And they carve you some, and you eat meat until you DIE. And then they bring you cinnamon sugar glazed pineapple and you know you’re in Heaven. I love this place. Only trouble is, when they carve off that beautiful slice of tri-tip, you have to grab it with your tongs and take it to your plate. I had to use my tongs with my whole fist, and still didn’t quite manage to grab it a couple of times. The delightful gaucho (dude with the meat sword) apologized every time, but it was clearly ME dropping it, not him cutting, and I wanted to tell him “It’s not you, my hands just don’t work” but I didn’t. I wound up putting my freakin’ boob in my plate once, reaching over to try and grab the slice properly. And then cutting up the meat was its own challenge, and trying to be discreet when my hands inevitably cramped up with the effort was useless because 1) I have to do a prayer gesture with my hands to get it to stop, and 2) my brother is observant AF. But it wasn’t a huge deal, just a quiet “hand cramping?” “Yah.” and that was the end. I realize next time, I’m going to have to ask someone to grab the slices for me. And probably cut my steak.

Four slaps in the face from ALS this weekend. The exhaustion, the loss of playing video games with mouse and keyboard, the fall, knowing I’m gonna have to have my steak cut for me like a toddler from now on….and yet.

And yet.

Not once did I lose my shit, or even feel like I was going to. Or needed to. Just a quiet acceptance. The exhaustion was to be expected, and things like this are just going to require a full day recovery anymore. That’s how it is. Gaming, well, I knew that it was coming, and I’ve been keenly aware that my ring finger in particular is very weak, so it makes sense that I can’t really do it anymore. The fall, well, they’re going to happen. Until I am no longer able to get up out of a chair, and even then, I’m going to get dropped. Being unable to cut my own food in the future, well, I’m honestly glad I’m still even able to EAT steak. And I have people willing to cut it for me. Gecko and his husband would have done it in a flash, had I asked. And next time, I will.

ALS still sucks. But I’m getting better at coping with the losses, to foresee them happening and bracing myself.

To fortify.

And that’s pretty awesome.

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.

Meat Shells are Terribly Inconvenient.

There’s a quote floating around on the internet, that I can’t find a source for, and it makes me very happy.

“You’re a ghost driving a meat-coated skeleton made from stardust, riding a rock, hurtling through space.

Fear nothing.”

I’m not sure about the fear nothing part; there’s plenty in that idea to fear. But it is a pretty accurate description of the human condition. And I take a weird comfort in this idea. It’s the same solace I take in describing ALS’ ultimate result as ‘fully aware, trapped in a meat shell’. The body and mind are completely separate things, and it’s just my stupid body that’s failing.

My friend Sam posted this thing from tumblr on her facebook today (and here I am, blogging on a social media platform about a post on a social media platform that was originally posted on another social media platform OH MY GOD I WIN AT META) and it made me really happy. Both in the content, and the internet’s reply (sometimes I really really love the internet community), and the nerdy joy that it brings me that I UNDERSTAND THEM. And it gave me an opportunity to explain my disease in a new way.

So the original post, by user MIckeyrowan was this:

having a flesh vessel is so annoying?????? like they have to be constantly watered, they have to be in specific temperature range to be comfortable, i’ve had a headache for like seven hours and nothing i do will get rid of it,
physical forms are so inconvenient??????????????

And the internet responded:

derinthemadscientist:
I knocked mine over yesterday and scraped off some of the outer barrier and it keeps sending me really annoying warning messages about it

vincentvangozer:
blood.dll has caused an access violation exception

asksecularwitch:
I still can’t figure off how to turn off the monthly compile time. It goes for like 7 days wrecks all the system and takes so much CPU time.

tharook:
I got the wrong model, too, and there’s no returns or exchange policy. I’m trying to make do as best I can with aftermarket modifications, but even that’s a real bind. And then I have to deal with all the purists who try to tell me I should be happy with the model I was given.

There’s many more, I’ll post them after this. So now, I have geeky new language to describe ALS: “My CPU has decayed signal integrity from the core processor to motor servos; this is a known issue and there’s currently no patch.”

So, that brought me a little bit of joy. And now I present you with some other awesome ones:

theriversdaughter:
Mine has a short in the warning and alert sensors, and keeps tripping the alarm system for absolutely no reason. It’s been taken to the mechanic many times, but the best they can do is recommend daily chemical baths for the wiring to keep it from arc-faulting constantly.

fabulousworkinprogress:
My uterus keeps trying to install this shitty bloatware that comes with certain dll processes and I keep refusing the update, then it goes through the whole defrag process deleting all those files.

living400lbs:
My histamine system is faulty and triggers for no reason. I keep turning it down but I have to keep reapplying the patches daily.

and probably my favorite:

noirandchocolate:
My unit will often refuse to turn off when I’m finished using it at night. I’ll perform all the shutdown routines listed in the manual and put it in its recharge station, but it won’t power down completely and just turn off! And it’s so annoying because the darn thing supposedly “requires” at least six or seven hours off to recharge every 24-hour cycle, so I’m left with a barely-functioning meat husk during the day when I need to use it to perform my work tasks and interface with humans. Such a buggy model, this one.

and the followup gospel truth:

mega-mine-cake-kink:
Don’t even get me started!! So a whole sub routine for morning will be buggy as hell for goddamn hours if the file known as caffeine is not loaded. however you need to constant reload the file or the system slows down again. And of course if you load it to often it floods the system and you have to go through the goddamn purge process. On the subject of loading though. Beware of those files with extensions .curry and .street-kebab accidentally load those and you will be running a purge routine every goddamn 10mins.

Too private.

“I tend to be pretty private,” she told me, as we talked of grief.

“I keep that close to my chest, usually, too,” I agreed.

“But you’re pretty open, usually? You have that blog.”

“I post a lot of things people would consider private and personal, sure. But when I get really sad about my own situation, I tend to shut up and not post for awhile.”

++++++++++++++++++++++++++++++++++++++++++++++++++

So I haven’t posted for awhile. Not that things haven’t been happening. Things being thought, that I ought to write down. Feelings to document, frustrations to record. Things. But it’s hard to write, when you feel bad. There’s a bullshit self-imposed rule of “if you can’t say anything nice”, when the whole POINT of this was to record the good and bad. The funny among the fucked up, the grace between the grief, the other alliterative things that mean shit happens and sometimes it sucks and it’s all valid and okay.

There’s been a vast lack of energy, both physical and spiritual, lately. I spent the entire weekend in bed. Sleeping or playing video games. Safe to say I’m in a depressive streak, and things are hard right now, but good stuff still happens. I have a lot in my brain. Work is stressful as shit, and that’s its own post, one of many that I feel I owe you, this place, this blog, my future self. One of many. It’s harder to type and that makes me not want to do it. I am tired. I am lazy. I would rather be escaping into virtual realms, the Commonwealth, the biome I call my Minecraft home, Discworld, anywhere but here. I am squandering the time I have left and the ability I have to do things with it, and I can’t bring myself to care, most days.

But I have things to tell you. And I shall. I’m sorry to myself, and to whatever audience here, and to the universe in general for not being a diligent reporter, for not allowing myself permission to post even the bad days, when the bad days aren’t funny. It’s just easier to sleep, instead.

I have things to tell you. And I shall.

And then I was just…peeing.

I wanted the title to be something more…dramatic/appropriate/somber, but Jack asked if that could be the title of my autobiography and I said no, but it COULD be the title of this post. So. This is a glamorous post, sure to make you fall madly in love with me.

Wednesday my body totally betrayed me. I mean, with ALS it does that as a matter of course, at all times. There have been FAR more instances of yelling at my legs to Do The Thing (including one total failure and forced sit-down while trying to get in to a car lately), and opening string cheese is becoming less of a struggle and more of a “forget it, I’ll get sscissors”. And now that I’m posting this, I’m realizing how awkward my typing is now. But Wednesday there was an Incident.

It started with a fall. I was cleaning up puppy pads because my elderly cat can’t stop peeing everywhere, and my little brother was coming over to steam clean my carpet for me. Balancing while operating a machine is no longer possible. So while scooping up the wet pads, my knees buckled and I just sat down. Wrenched my ankle a bit, still hurts. I was upset, but not crushed or anything, it happens. Justin the Wonder Brother came over, steam cleaned the office carpets and most of the dining room, and then ran the Spot Bot when Parmesan sauntered in and peed on the still-damp clean carpet.

Asshole cat.

The rest of the night proceeded without incident until I was ready for bed. I went to the kitchen to rinse out my cup and get more juice (see, Dietician? I’m drinking juice instead of soda with my evening pills like I promised!) and as I’m standing there with the water running, I just..start peeing. And I can’t stop.

Now, with ALS I was told soooometimes there is some ‘bladder urgency’ because of muscle spasms. And I’ve definitely experienced that – just all of a sudden YOU GOTS TA GO. And there’s been a couple of times I almost didn’t make it. But this was the first time I just completely lost control. I couldn’t do anything about it but stand there, fervently wishing it would stop, just hold it, just wait, the bathroom is LITERALLY ten steps away, but there was nothing. Just grab the roll of paper towels and wait it out.

And when it was over, I cleaned up the mess, took a shower, and bawled like a broken thing. Because one of the silver linings in all of this was the solace I took in the fact that people with ALS generally maintain bowel and bladder control. If I have to be trapped in a meat shell, at least I don’t have to be a meat shell sitting in a wet diaper. But then this, and I don’t know what to think, and I hope it’s an isolated incident, but it was jarring and scary and I spent alllllllllllllll day yesterday in a terrific funk that I’ve still not entirely shaken.

And then yesterday my nephew fell asleep and peed on my couch so I guess my house is just kinda a pee zone. Hooray for that.

Sorry I’ve not got something more lighthearted for you today. Sometimes with ALS that’s how it is. But I’m still mobile, still alive, still working. Still mostly happy. Still loving all of you.

My subconscious is a bitch.

I think I’ve said it here before, but my dreams are weird. Not like normal people weird, and I realize that everyone thinks their dreams are weird. I’m talking very strange but vivid dreams that I remember perfectly; I can draw you maps of places I’ve been only once in a dream, and they are chock full of what the actual HELL. My dream life is very active and usually awesome.

And my dream self is a snarky bitch, sometimes.

In my dream last night, my attempts to take a nap were repeatedly thwarted, by random children deciding they wanted to cuddle with me (what the hell, dream children, I do not like you), or trying to figure out where all the kittens were, or a jerk guy coming in to play Super Mario Brothers on the television next to my bed. I gave up and went to the other room to sleep, my grandfather’s room in a house that no longer exists, and my older brother Gecko followed me in there to tuck me in. He asked me a question, and when I replied I kind of stumbled over the words, like a stutter.

Gecko being Gecko, he immediately made fun of me and repeated my babble.

“What are you going to do if it turns out that’s the first time ALS has affected my speech,” I asked him. “You’re gonna feel like such an asshole.”

And he looked aghast for a second, and then realized I was just being a bitch and flipped me off. I woke myself up laughing.

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.

But ya ARE, Blanche! You ARE in that chair!

Me versus life, some days.

The cruelest trick about old age and ALS alike is that you don’t know you can’t do something anymore, until you try and your body says HAHAHAH NOPE. I have a full list of things in my head that I probably should not do anymore, and every so often I say to hell with it and try anyway, and then inevitably said thing is moved firmly to the NOPE category.

It’s hard to even complain about this stuff, too, because inevitably I will say something like, “Well I found out for sure that I can’t crawl under desks at work to recable power cords anymore, cause it’s too hard to get up off the floor” and I guarantee it will be answered with “what the hell are you doing crawling around on the floor in the first place! Find someone to help you!”

And it’s not that I don’t want to, it’s not even an “I can’t admit I need help” thing, it’s just that sometimes I feel the need to push my own limits and find out for definite certain if I can still do X. Just to see. To know if I should even bother to make the attempt, in an emergency.

To wit: twice now I have needed to move fast to save someone from harm. Over a year ago, my nephew was riding his little plastic car in my house, he knocked into a piece of furniture, and it began to topple over on to him. I couldn’t move fast enough to prevent it falling, and fortunately it wedged itself against the wall first so I had time. Last night, my cat got caught in the handle of a paper bag and startled herself, which sent her tearing around my apartment with a paper bag around her neck. This might have been funny except that she was so terrified she was peeing the whole time, and the last time I had a cat do this, he managed to rip off his entire claw in panic. I could not even get up to begin to get to her, this time, and by the time I was up, she’d wedged herself in the corner under my couch. I pulled most of the bag off of her, but didn’t get the reinforced cord strap before she dashed off again. I sat on the couch a moment, looking at the little trail of pee all over the place, and was really upset that if she’d been in actual danger of choking, she’d be dead by the time I got to her.

I cleaned up the aftermath of Idiot Pee Hundred, calmed her the hell down after I found her huddled under the covers at the foot of my bed, and resolved no more handled bags lying around on the floor, whether they’re fun toys or not. And now I know that if this happens again, there’s REALLY nothing I can do about it. Cause ALS is a bitch.

2015 Was A Jerk.

Things I Lost in 2015:

My ability to snap my fingers

My hands started their decline, this year. And it freaks me out. I’m still eating and breathing fine, so that’s grand. But…my HANDS, goddammit.

The Zombie Tramp House

Pretty damned near my dream home, bought at a steal because I got in at the bottom of the market, it had everything I wanted. Huge kitchen, 2 car garage, an enormous backyard for gardening, and room to spare. Six months after purchasing my house, I had a diagnosis that meant I wouldn’t be able to climb stairs soon. And the floor plan is such that there was no way to convert it to be accessible. And so I had to sell my dream house and move back in to an apartment. I traded a 4 bedroom house with a 2 car garage and huge yard for a 2 bed, 1 bath apartment. For only slightly cheaper than my mortgage payments.

My Main Babe

I lost my bestie and my primary caregiver and I’m still not sure what happened. And perhaps one of the reasons I lost her was because I still don’t understand why. I haven’t talked about that at all because it’s confusing and hurtful and I don’t want to present the wrong story, so I keep my mouth shut. But she’s no longer a main piece of my life and it hurts that she’s gone.

My friend Chad

Fucking cancer. God damn it all.

One of my newts

I found the dessicated corpse of one of my fire belly newts in the livingroom yesterday. Pretty sure Molly pulled him out of his tank and played with him until he dehydrated and died. And now I have one lonely newt in a tank by himself. Waldorf no longer has Statler. And I can’t even be mad at Molly for it.

But hey, at least I still have my health…..OH WAIT.

Meh, feeling pretty bitter about a lot of things today, but I know there’s some good stuff in there too. I made a lot of new friends. I found some new music. I had a lot of support. I had good times and good memories and still have a job and people who love me a lot. I still have friends and cats and music and family and the ability to enjoy delicious food.

But still. Dang, man.

I’d name this post some kind of marijuana pun but I hate them.

Okay, peeps. Real talk. First? Any employer who may or may not be reading this should regard this post as a work of fiction or satire or something. I have never smoked pot*. I hate the smell of it, it causes migraines**. These are theoreticals and opinions and satire. As far as I care to say.

I know I’ve mentioned marijuana before, but I can’t seem to find it to link to, so I’m just going to pretend I’ve never said anything and start from the beginning. So here’s the beginning:

I have hated pot ever since I was a wee thing. (seriously, as a kid I once cried so hard I threw up and was angry at my mother for WEEKS because she smoked a joint with our neighbor) The smell of it is one of the small handful of things that will nearly ALWAYS trigger a migraine, which doesn’t help at all, but I mostly have always had an intense dislike for it because of the people I know who smoke. Who…’partake’. And they’ve ruined that word for me. I hate that the people most upfront about habitually using it are usually complete idiots. That stoner laugh, the drawn out “….whut?” Most of the people I knew while growing up who smoked pot were complete idiots, and it was not until much later in life that I learned the difference between “person who smokes pot” and “pothead”. My sole experience with the drug was a second hand high I got at a Depeche Mode concert, and that may VERY well have been endorphin and adrenaline that come naturally with a rock concert. I came home hyper and hungry. I came to know some people who could keep their act together but still smoked, but I always thought a little less of them, if I’m being perfectly honest. OK sure you can hold down a job, but how much more could you accomplish if you DIDN’T light up every night when you got home?

I’m saying, I have some prejudices.

How could I not, really? My direct experience has always been pot = migraine. Stoners = idiots.*** Oh sure, people swore up and down that pot cured cancer and AIDS and ADD and whatever other letters you wanted to throw at it. You can make hemp everything! The hemp people always struck me as trying to find a loophole to legitimize their habits, NO SERIOUSLY IT’S NOT FOR GETTING HIGH MAN IT’S FOR PAPER AND CLOTHES AND SHIT and okay also getting high because you don’t see us making the same arguments for using bamboo which ALSO does all these things plus FOOD, and collecting signatures for THAT, but hey, whatever man. I could never take any of it seriously because all information about the medicinal benefits were nothing more than anecdotal. ..Because hey, it’s pretty hard to do a legit medical study on an illegal substance, turns out.

…Okay side rant, people, because I HONESTLY, SERIOUSLY believe that a major reason why no one ever took marijuana seriously as medicine? IS BECAUSE YOU NAME YOUR STRAINS DUMB ASS THINGS LIKE CAT PISS AND PEPDAWG AND ALASKAN THUNDERFUCK. There was no medical journal out there willing to take seriously a chemical composition and therapeutic benefit breakdown comparison between Purple Urkel and Ninja Turtle. If you want to be seen as a legitimate, scientific cure, KNOCK IT OFF WITH THE SATURDAY MORNING CARTOON NAMES. No doctor is going to prescribe “2 tablets of Purple Monkey Balls”. There is probably a way to scientifically, accurately track the medicinal benefits of each strain, but you stoners made it REALLY REALLY HARD for us to see it as science with names like Romulan Cotton Candy and Skyhigh. OKAY? Ok. Also, I only made up ONE of those names****.

Anyway.

I’ve a lifelong dislike for pot, is what I’m saying. It was recently legalized for recreational use here in Oregon, and I actually think that’s marvelous for a lot of reasons. I strongly feel, that no matter what my own opinion on smoking pot might be, anyone should have a chance to use a medicine if they thought it might help. There’s been awesome articles about the benefits people have found through its use; epileptic little girls finding seizure relief, and cancer patients using it for pain management, and ADHD people using it for focus, and PTSD victims using it to quell anxiety attacks, and I think that’s awesome. I am ALL ABOUT letting people do what they feel is doing them some good, so long as it hurts no one else. People have been telling me for years and years that pot would help with my headaches, and while I declined to take up their advice, I encouraged others to do so if they thought it helped. Just don’t smoke it around me, please. I agree that it’s practically harmless, it fixes a lot of things either for real or through the placebo effect, legalizing it recovers a lot of police time pursuing people who are not actually a threat, and brings in some tax money. I don’t believe it’s truly harmless, because while doing nothing but smoking pot may not be dangerous to your health overall, it’s harmful like overindulging in ANY addictive pastime, like video games. You’re not hurting anyone, but how long has it been since you checked in on your friends? They miss you. And you are REALLY BORING to people who don’t do #hobby because that’s all you ever talk about, be it pot or Fallout 4. But I freely admit I’d MUCH rather be on the road with someone driving stoned than drunk. You don’t get stoned and go on a bender that ends with seven dead. You don’t clonk a granny over the head and steal her purse to get money for a joint, no matter what Reefer Madness told you. You don’t get stoned out of your mind and then call your ex sobbing that you two should get back together, because, like..the phone is way over there, and you’d have to get up to get it, and then press all those buttons.

So I was honestly kind of irritated when I read a lot of studies about medical marijuana doing great things for people with ALS.

I asked Dr. Goslin about it, if it would help with anxiety and the twitches and the cramping and everything, and she said, yes, it probably would, would I like a medical marijuana card? I told her I’d go do my own research and pursue it if I felt it would do me good. I did a LOT of research. I talked to a few people who used it, and tried to open my mind to the idea. While I fail to see how something known to trigger migraines could possibly help my headaches, I was at least passingly interested in the possibilities. A year passed, the data I found was inconclusive, so I let it lie.

Then I had a Really Bad Stretch. So bad I can’t even tell you about all of it; but my heart was broken by a lot of awful events conspiring to happen at once, so much drama and heartache and confusion and I really, really just wanted it to go away and let me think straight. I was back in the same dark headspace I used to get in when I self harmed; not a desire to die or disappear, just desperately needing an outlet and a calm space to sort things out. Some time to think without panicking. A friend strongly advocated for marijuana as a stress relief, and gave me strong enough testimonials that I caved and applied for the card. Because I strongly feel, that no matter what my own opinion on smoking pot might be, anyone should have a chance to use a medicine if they thought it might help.

Including me.

The card took FOREVER to get to me and cost $200. An initiative passed to legalize recreational pot here in Oregon, and it was actually in place and active only a week or so after I finally got the thing. It’s still necessary, though, because ‘recreational’ only includes the flower and seeds. No oils, tinctures, edibles, or anything, and like I said, the smell gives me migraines so I’m not smoking it ever. But I was interested in the alternatives and dipped my toe in. The first thing I bought were chocolates, I bought them from a legal dispensary in Washington that was INCREDIBLY crowded so I didn’t get a lot of time to ask the questions I had. A lot of questions. Dosage, strains, methods, I mean I knew that different strains did different things and that ‘medibles’ (seriously, stoners. “medical edibles LOL U GUIZE SO CLEVAR”) reacted differently in your body than smoking, but I needed details. I didn’t get them that day, just bought the very expensive white chocolates, and slunk away.

I made sure I had a babysitter when I tried a chocolate with 10mg in it. It tasted bad and did nothing, which wasn’t terribly surprising since I was later told that 10mg of THC is NOTHING. Another day, I tried a vaporizer with a friend who smokes but had never used a vaporizer before, and it did nothing for either of us. I tried two chocolates, another day. Felt nothing but calm, but I’d also slept all day and then soaked forever in a hot bath with a Lush bath bomb so I was pretty freakin’ relaxed already. I saved the last two and tried them another time, when work had sent me into a rage, so I knew it would be a good test. I felt nothing but calm, which could have been the chocolates, but could have also just been the time that passed once I was home from work. I was still angry as hell, but just not as energetic about it – which tends to happen with the passage of time on its own. I dwell, but I don’t tend to stew when I’m angry. So that wasn’t a particularly good test, either.

The same friend that originally testified so strongly (later jokingly called my Pusher) brought me a small assortment of ‘medibles’ (ffs) to try. These gummy robots, hard candies, a pink lemonade, and some CBD caps. CBD is the more medically useful compound in pot. I don’t want to get high, just want the medical benefits, so low THC and high CBD is what I was after. The gummy robots were super cute and there was a little diagram on the back showing which part of the robot had what kind of dosage. I tried a small piece of one of the gummy robots (his head) one night and…yeah, I got high, I guess. I was decidedly altered. I wasn’t giggly or paranoid or anything, but aware that my perceptions were altered. I opened a wordpad document and started typing something in it but stopped bothering after awhile, but the gist of it was basically “now I know why stoners talk like they do, because there’s literally no way to describe these sensations without sounding like you’re on drugs.” Even later, sober, while trying to explain the sensation to a friend, it was TOTALLY STONER SPEAK. “There was something like a core of energy in my gut, and it pulsed out in waves, and I could feel the tingling of the waves as they radiated out and off of my body like electricity.” (Um. Yeah. Shut up, stoner.) I was cognizant enough to know that social contact would probably be a bad idea, especially writing the emails I was working on to introduce myself to clinical trial coordinators, so I banned myself from social media and instead just watched television for the rest of the night, knowing that it was NOT in 3D even though it sort of looked like it. “This is probably WAY more surreal right now than the actual show is. I’ll have to rewatch this tomorrow and compare.” (it was still weird, for the record, but not nearly as bizarre as I remembered, predictably.) My body was tingly and heavy and I did not enjoy the feeling. I had to walk to the kitchen to get something and had to concentrate really hard on not falling, which might be fun for some people, but I already have real life troubles with such things so I did not need a chemical to enhance that. I wound up sort of falling at one point, very gently, and it was really hard to get back up; and even chemically altered, I had the presence of mind to realize that this would be really, horribly upsetting if I let it be, and turn into a Terrible Time, so I concentrated really hard on not thinking about it at all and just pet the cats until I felt like I could stand up again. I went straight to bed and was glad to wake up and have it gone.

I tried a hard candy, another night, and it didn’t feel like it did anything except test my powers of endurance by forcing myself to suck on an awful hard candy for 20 minutes. I tried the other part of the robot another, different night, and got REALLY altered, and my twitches got so much worse it was like having a seizure. I found I could calm the jerking by thinking about it, practically mentally commanding myself to do so, but then they’d start right back up and there wasn’t anything for it but to sleep it off. Except I couldn’t sleep because I was spasming so hard I was kicking the cats off of me and reenacting the part of Ash from the Evil Dead. GIVE ME BACK MY HAAAAAAND. It wasn’t painful at all, just completely surreal to watch my limbs thrashing about of their own accord, and a little scary. I wound up taking a video of my hand twitching, mostly to see if that was really what was happening or I was maybe just imagining things. Turns out I wasn’t. I can’t move my hand that fast if I wanted to, anymore. Maybe not even before they started losing their strength; it was seriously bizarre. But, I had another bad day and another piece of robot, so I tried it one more time and got REALLY altered and REALLY REALLY sick. I wound up in bed, in the dark, trying to be quiet and calm. I wasn’t freaking out or anything at all, I was just seriously overstimulated, and every sharp noise was a weird synaesthetic flash of light in my brain, and eventually I just barfed it all up and felt a lot better and went to sleep.

So, fuck those little robots.

Also? Fuck the taste of pot. SO GROSS. There is no way to make anything with pot in it that doesn’t taste like pot, and pot tastes AWFUL. Bleah. The pink lemonade tastes like acid and death and pot. The hard candies taste like artificial raspberry and sweet and pot and death. -15/10 DID NOT ENJOY. WILL NEVER ENJOY. Shelf that with beer and wine as Things I Do Not Like and Don’t Understand Why People Do This To Themselves On Purpose.

Bad days continued, and while I was pretty sure I hated pot forever still, I hadn’t tried any concentrates and had no idea what strains I’d actually tried so far. I knew there were LOTS of options. I finally went to a recommended dispensary with a name that was ..tolerable.

…Okay side rant number two. Dispensaries: STOP WITH THE PUN NAMES. “CannaBliss”. “Grin Reefer.” “ReLeaf”. “Urban Farmacy”. OK YES WE GET IT YOU SELL POT. IT IS LEGAL. You’re NOT CLEVER. You are making it HARDER TO TAKE THIS SHIT SERIOUSLY. I feel dumber just walking in. Again, like with the strain names, if you want to be taken seriously as medicine, maybe calling your dispensary “Fifty Shades of Green” is not the road to credibility. It drives me NUTS because only stoners think this is funny – HURR HURR “420 Collective” IS REALLY CLEVER GUISE. Only SLIGHTLY less irritating are the ones that take some aspect of pot, open a thesaurus and choose a name. “Above”. “Ascend.” “Elevated”. “Lift”. GET IT CAUSE IT’S ANOTHER WORD FOR HIGH. LIKE HOW YOU GET HIGH WHEN YOU SMOKE POT. (I can’t stand it when beauty salons do it either, for the record. “Curl up and Dye” was funny the first time I saw it, but how many “A Cut Above”s do we need, or “Hairway to Heaven”. GET OUT.) Fine, name your store something that clues people in to the nature of your business. “Holistic Remedies”. “Green Gardens”. So far “Flora” and “Bloom” are the ones I’ve found the least irritating. But really, as long as you put “Dispensary” in there, people will get it. You don’t see proper doctor clinics with names like “A Cut Above Surgery” or “Meds4U”. There is a reason for this. You are the reason no one is taking marijuana seriously as medicine. Stop it.

okay.

So I got to this recommended place, was soothed by the totally actually clinical interior, like a doctor’s waiting room, and approached the reception counter. I explained what I was after and why. Something for anxiety, maybe, but primarily an anti-seizure/relaxant, I wasn’t looking to get high. He was extremely knowledgeable, and suggested several particular strains. I told him what I’d tried, and what they did, and that I couldn’t smoke and why. He said it was no problem, they have several vaporizers possible, but the higher heat, the better the effect, but the more smell. He explained how oils work and what the naming convention was for some of the things. The oils come in a syringe, “Which sounds scary,” he told me, “but the oils are so sticky it’s really the best delivery method.”

And the whole time he’s talking and writing things down for me on this post-it note, I’m thinking, “Great! Are you gonna maybe SELL me anything?”

I told him about my experiences with medibles (guhhhhhhh), explained I wasn’t looking to get high but I wasn’t adverse to feeling some effects if the thing did good. He used the word ‘intoxicated’ instead of ‘high’ which I liked. He explained, continuing to write on the Post-It, that I would want higher CBD and low THC to avoid the intoxicating effect. I asked questions about what the oils’ availability and such was, hint hint, do you have this in stock right now? And he was oblivious to the subtlety until I finally asked, “Do you have any of this that I can actually LOOK at?”

“..Oh! Do you have a card?”

…That maybe should have been a first question, boyo. Yes, I did! He took my patient ID number, matched my card with my ID, and buzzed me into the back. The back was actually just a storefront, and not little offices at all. I have no idea why there are three doors. He pointed out the syringes, and suggested that I pipe out little dots on a piece of parchment and freeze them, and when I need a dose, just peel one off and take it like a pill. But he put the syringe back in the case. He walked over to the tinctures and pulled one out, a bottle of a strain called Harlequin. It is a glycerin base, so it will be sweet, he said, and I said, “OK I will try that” before he could put it back. And then I kind of looked around, saw the display for the “sour bhotz” and said, “Them robots, man.” He nodded and showed that the display was almost empty. “Obviously they’re very popular,” confirming that people actually do enjoy that feeling. Mystifying. They had all kinds of other medibles (whhhhhyyy) that I wouldn’t have minded looking over, but he didn’t seem inclined to show or sell. So in the end all I bought was the tincture, which was super gross and did nothing. Pot tastes like barf, so let’s make that barf SUPER SWEET and then have you hold it under your tongue for a few seconds before swallowing it okay? To make sure it’s completely warmed up and the oil spreads alllll over your mouth and makes everything taste gross for the next ten minutes and assure that you hate your life if you burp.

I wound up going back and buying a vaporizer (it is a vaporizer. It is not a vape. OH MY GOD YOU SOUND SO STUPID WHEN YOU SAY THAT. ‘Vapin!’ ‘I’m VAPIN! LOOKIT ME WITH MY VAPE’ HURR DE DURR) pen and a small assortment of different strain concentrates from a MUCH more helpful and sales-savvy assistant. No less knowledgeable and willing to educate, but much more willing to actually, you know, let me BUY something. I explained up front that I was looking to get an assortment of things to try and would come back for more of the thing that worked. I got one for anxiety, one for focus, and one that was the highest CBD concentration. I tried them all, and they stink both figuratively and literally (“It’s harmless, it’s just water vapor.” “If it were just water vapor it would be odorless. It is not. IT STINKS LIKE POT AND THAT IS HARMING ME.”). They don’t alter me or affect me in the same way as the stupid robots, which is good. But they don’t actually do much at all. They just taste bad and make me cough and then dry out my mouth really bad.

And to top it off? It doesn’t help anything. I don’t get calm, I get incapable of thought, which is frustrating. I’d actually rather be sad than frustrated, any day, and I’ll take crying because I feel powerless over getting angry because I literally can not remember the thing I was just trying to do. I don’t enjoy getting ‘high’ and I don’t see any benefit for the physical effects I’m trying to combat, so there really isn’t a point to it for me. I gave it several good tries, but pot is definitely Not For Me. I don’t see the appeal in how it makes you feel. I like not thinking about stressful things, but I don’t like being unable to think about anything at all. I don’t like having a 5 second attention span. It didn’t calm, it didn’t quiet, it just made it really hard to concentrate and impossible to do more than one thing at a time, like walk, which I already have enough problems with. I don’t enjoy feeling like my reactions are on a time delay and my density has increased a hundredfold. The muscle twitching either stays the same or strangely got so much worse. The cramping and sleeplessness and headaches are all still there.

So medical marijuana gets a big ol’ F. More power to you if it works out for you and your symptoms, I completely support you. Even if you just want to get high and watch cartoons, I support that, too, and I’m really trying hard to work on that whole ‘pot smokers are losers’ mindset from my childhood, I promise. Just don’t smoke it around me, please, because it stinks.

*This is actually technically absolutely true and did not need a qualifying statement.

**This is actually also totally true. I guess I just feel like making asterisked statements for no reason today.

***Also not helping, the fact that people who smoke pot but still have their shit together DON’T TEND TO TALK ABOUT SMOKING POT ALL THE TIME. So you don’t know they smoke and the visible perception of pot smokers as a collective is just the stupid loud people. Just like with religion and politics, really.

***Skyhigh, the LEAST RIDICULOUS ONE. Think about that, stoners. A MADE UP NAME WAS LESS SILLY.

First Time For Everything: Dropping

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

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.

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.