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.

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.

The Road to Diagnosis, Part Two.

Electric Boogaloo.

When we last left our intrepid adventuress, she was…pretty much where she started!  But now had orders for a full spinal MRI and a referral to an amazing specialist.

Symptoms now were a pretty obvious ‘gait disturbance’ – I’d started to have coworkers asking me if I’d hurt myself.  Another one pointed out that I had a tendency to lean against walls when I walked, which I didn’t notice until he said something.  I didn’t HAVE to rely on the wall for support, I could still walk fine on my own, albeit with a limp, but I guess subconsciously I wanted that support.   The thigh twitches were constant, sometimes so bad I could watch them happen through a pair of jeans when I was sitting.  The cramps had stopped happening just at night, and had started randomly happening for the stupidest reasons.  I’d try to sit cross-legged on the floor and NOPE SORRY YOUR THIGHS ARE GONNA CRAMP LIKE HELL NOW OK.  But if I just stretched through it, I’d be able to sit cross legged no problem.  I’d wake up at night with terrible cramps because I let my foot lean off to the side while sleeping on my back because that is what it DOES when you are relaxed and sleeping, but no.  I’d have to wake up and roll over.  Because I was cramping.  From sleeping in a relaxed position.   Occasionally I started getting cramps in my stomach and sides, too, like a running stitch.  There was still absolutely nothing wrong with my hands.  No slurred speech or anything.   I was noticing definite muscle tone loss in my calves.  Handrails on stairs were now kinda mandatory.  Elevator over stairs every time. 

I really, really missed dancing.

It was also around this time that I started having to tell people that something kind of serious was going on.  I agonized over how to tell people that wasn’t a five minute origin story out of a lame comic book for the world’s worst superhero, or a overly dramatic “I AM BECOME CRIPPLED.” 

“Did you hurt yourself?”

“Well no, about a year ago I found out I have a hard time running, and then it’s sort of progressed to this constant limp but we don’t know what’s actually causing it but nothing hurts and we’re figuring it out but so far it seems to be some sort of neurological thing.”

or

“I’m losing my ability to walk.”

Both are factual, one’s boring and long, one sounds so much worse than it actually was. Probably. I hoped.  The previous sounds like an apology, sorry to bother you but I’m okay really thank you for asking I’m sure it’s nothing to worry about at all but thank you for noticing and asking after me how are you? The latter is some pretty harsh words, which are then followed up immediately by “BUT IT IS PROBABLY NOTHING AND TOTALLY REVERSIBLE I’M SURE IT’S FINE.” I’ve also used a sort of dismissive “I’ve got some sort of neuro thing going on” which is…open ended and ambiguous enough to be worrying.

One total stranger guy asked if I’d hurt myself moshing.  Because LOLZ I HAVE PUNKY COLORED HAIR AND TATTOOS AND MOSHING IS WHAT US YOUTHS DO AMIRITE?  I felt like telling him, no, I’m just so fucking punk rock that my neurons are burning themselves out.

…I still haven’t worked out how to drop this on people when they ask. 

So ANYWAY!  MRI.  That happened.  I went to see the awesome specialists’ colleague instead, because awesome specialist mostly dealt with ALS.  I was happy to be taken off her plate if that were the case.  The new to me specialist was baffled, some more.  She wrote me up as “Diagnosis: Remains unclear at this point. Considerations include peripheral nerve disorder (Charcot Marie Tooth, hereditary) vs motor neuron disorder (Spinal muscular atrophy vs ALS variant) vs less likely primary muscle disorder.” I continued to be an enigma.  I wasn’t a good candidate for ALS because it was only in my lower limbs, and progressing so slowly.   But it was probably not multiple sclerosis, or muscular dystrophy, maybe it was Charcot Marie Tooth (which I started calling sharktooth marie because they SORELY missed that opportunity themselves when they wrote it up).  In the end, she conceded defeat immediately, and talked to her colleague, the one I’d originally been referred to but was not accepting new patients except for ALS.  Worrying.  I guess I was intriguing, though, because she took over my case.

This is how I started working with Dr. Kimberly Goslin, who is amazing.  Every doctor I’ve dealt with had agreed with me.  The neurologist I’d initially seen told me she was doing amazing work, when he referred me over.  I was also referred to physical therapy, just in case it was reversible with some work, and my physical therapist noted who I was working with and said, “OH!  She’s REALLY good.”  I wound up seeing three other therapists there, and they ALL commented that she is good.  The neurologist I saw instead of her seemed relieved that Dr. Goslin agreed to take my case, like she was bowing to a far superior talent. 

In the meantime, I had all of the blood tests I hadn’t already done, and a redo of a couple of them, like my creatinine kinase, which is an enzyme present when there’s muscle damage.  It had been high before, so they wanted to see if it was getting worse.   I had a referral to a physical therapist to see if I needed some kind of walking assistance by way of braces or cane.   They didn’t see a need for it yet, because I could walk without falling or anything on my own.  My balance was still good.  The actual therapy exercises focused on strength building – we didn’t want to overexert me and burn out neurons if it was something degenerative, but we wanted to do SOMETHING, so my exercises concentrated on making the muscle that I still had stronger, so there was more power to call on when I needed it.  I discovered in my initial appointment that my foot had a tremor, which was new. 

I met Dr. Goslin in November of 2013and had more stabs and shocks.  I am now an electric voodoo doll.  She redid all of the usual tests about strength and balance, and then poked me with electric needles.  She said the most likely candidate at the time was Sharktooth Marie, which there was a test for, but it was crazy expensive and hard to get approved.  We went ahead seeking that approval.  It was the best option, too, out of the remaining possibilities – still degenerative, still me in a wheelchair, but not dead.  In the meantime, while we waited for approval for a $15,000 genetic test, we talked about other avenues of investigation.  A spinal tap, maybe, a muscle or nerve biopsy.  More blood work, just to rule out everything ever.   Luckily my insurance was/is awesome because I work for a really good company, so the testing was approved.  We started mixing in e-stim with my physical therapy, which seemed to help a bit. 

In December I noticed a slight tremor in my hands.  It seemed to be sporadic, and it didn’t really show unless I was holding a mirrored compact or something.   No loss of strength at all, just, a little wobbly when trying to hold a camera still.  My PT wasn’t too worried about it as there was no loss of strength, and it wasn’t a horrible tremor.  Might have been there for awhile, but I only noticed now because I was sensitive about changes to my hands.  Still no fasciculations in my arms or hands.  Still breathing fine.  Still swallowing and speaking normally.   I had the followup with the orthopedic surgeon about the thing in my hip, and that was unchanged and fine and I can safely ignore it.   The twitching and cramps in my legs were starting to interfere with sleep at this point.  It’s like when you’re about to fall asleep and you have that quick little dream about falling, so you wake up.  Only it’s just your legs.  Obnoxious.

In January 2014, I got the genetic test for CMT done, which came up negative.  Dammit.  I saw Dr. Goslin for the second time and she noted no loss of strength since the last meeting, and she didn’t seem too worried about the hand tremor, but she noted it.  Our next step, she decided, was a spinal tap, which I had done January 17th.  It was…interesting.  Certainly not pleasant, but no where NEAR as horrible as House makes it seem to be.  Definitely not the most painful thing I’ve ever been through.  The spinal headache I got following the procedure was annoying as hell though, and lasted about a week.   All of my CSF tests came back normal.  So it was definitely not MS, not an infection, not a host of other things. 

My follow-up appointment in March wound up with a  referral to a surgeon for a muscle biopsy.  There was a 70% chance it wouldn’t tell us anything, I was cautioned.  But at that point?  A 30% chance is far preferable to no chance.  Some information is better than no information.  At this point, my diagnosis was hovering between it being a motor neuron disease like ALS or a motor neuropathy.  It might be MND because: I’m a lot younger than most people who get diagnosed with ALS. It’s only attacking my feet/legs. It’s progressing slowly.  It might be ALS because: MNDs don’t typically include fasciculations (the twitching), but it’s very typical of ALS. We found out in this appointment I also have slight hyperreflexia in my jaw – which is a tendency to snap my mouth closed when my chin is tapped. Which I did not know about until that day.  We talked about immunotherapy as an empirical trial, just in case it was some inflammatory disorder – it couldn’t hurt, and if it helps, then hooray!  We talked about either a steroid like prednisone or IVIG therapy.

We also tried me on klonopin to try to control the twitches, which turned out to be a DREADFUL MISTAKE.  It spiraled me into this horrible horrible depression, so we backed the hell off of that after one week and never spoke of it again.  After the biopsy, I was to be referred to PT specifically to talk to them about ankle-foot orthotic devices – in the biz, we call them AFOs – and revisit that option to help me with the fatigue when walking long distances.  Like the mile I walk to the bus stop every day to go to work. 

I had the biopsy March 12th.  It came back showing signs of significant active denervation. “What this means,” Dr. Goslin said in an email, “is that there is evidence of ongoing damage to your motor neurons. There is no evidence of inflammation; I had been hoping to see inflammation which is more treatable. As discussed, we will repeat the EMG when I se you next and talk about whether we should consider a trial of immunotherapy.”

I had my appointment to try out AFOs on March 28th.  THEY ARE FUCKING AWESOME.  Oh my GOD the difference. 

My follow-up with Dr. Goslin was initially set up for April 3rd.   She got the full results of the biopsy, while I had been emailing her asking her about the klonopin and could I get the fuck off of it please.  Can I just state, for the record, that being able to email my doctor IS GODDAMNED AMAZING.  I LOVE THAT.  We had a little bit of back and forth in that conversation, and she asked if I wanted to move the appointment up; she had an opening on Tuesday.

I said yes, please.

It hit me after, that my appointment was now on April Fools’ Day.  I posted something to facebook on the way to the doctor’s that no matter what the result of that appointment, people would think it was a prank.

I was officially diagnosed with ALS at that appointment.  I wished it was a prank.  But it wasn’t.  And this is my life now.

My suddenly finite life.