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.

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.

Lalochezia

There’s something magical about swearing.

Lalochezia means relieving stress or pain through swearing. La-Lo-KEE-Zee-Uh. It derives from the Greek words for ‘speech’ (lalia) and defecation (chezo). It is literally Greek for ‘talking shit’. That, too, is magical.

If you’ve been paying attention, you know it’s not just a word, it’s a way of life for me. There are times that swearing IS appropriate, thank you. I’ve always used it to promote catharsis and relief when angry, sad, or stressed out. I swear casually too, but I wish I didn’t. My casual swearing isn’t nearly as profane as my lalocheziac screeds, but I would prefer to keep the swearing to important times. Overuse of the words diminish their power – a mouthbreathing stoner kid using the word ‘fuck’ doesn’t have nearly the same punch as say, a priest using it.

I’m sure you’ve known the relief. That day everything went wrong, your alarm didn’t go off, you missed the bus, you were late to work, the coffee was cold, you realized halfway through the day your underwear was on backwards, the printer jammed, they were out of your favorite thing in the vending machines, your boss griped at you for something out of your control, it suddenly started raining when you left work and you weren’t dressed for it; just, a thousand and one small insults piled up on top of each other all day. And then you got home, kicked off your shoes, grateful to be home and safe, and banged your toe on the couch which made you drop your mail all over the floor. All of the microfrustrations of the day exploded out of you in one vocal outburst.

I bet you didn’t say “darn it”.

There are times when it just isn’t enough to say, “she wasn’t very nice”. “Mannnn, FUCK her.” It doesn’t convey enough of your frustration with the problem to tell someone, “I couldn’t get the door open to get the cat out of the room before he barfed on the carpet”, but it works perfectly when you tell them, “I couldn’t get the fucking door open in time so the cat puked on everyfuckingthing.” And many times I am betting a mental FUUUUUUUUUUUUUUUUUUUUUUUUUUUUCK!!!!!!!! brought you a little relief.

And it really did! Studies have proven that swearing brings pain relief. Here’s one, from Scientific American. Mythbusters proved it. And here’s an article in Time that explains why it works best if you don’t normally swear a lot.

SCIENCE IS ON MY SIDE, BITCHES.

I’ve loved that there is a word for it. It delights me when there actually is a word or a term for that thing, like ‘esprit de l’escalier’ for the devastating comeback you think of after the argument’s already over or “semantic satiation” for when you see/hear a word so often it ceases to mean anything. Language is amazing, even if it’s foul. Sometimes, ESPECIALLY when it’s foul. I found out about the Greek meaning a handful of days ago, and was delighted all over again.

I felt a connection to that word, and specifically to what this site is. ALS:FTS has brought me vast relief through swearing about the things that suck, and proclaiming the things that don’t. I get very articulate and sweary when I’m angry, and babbling incomprehensibly when I’m happy, and honestly kind of boring when I’m neither of these things. I like lalochezia as a word, as a concept, and as a therapy. On a whim yesterday, I checked to see if lalochezia.com was available. It was. I toyed briefly with the idea of moving this blog over there, but a bunch of logistical reasons made me leave this alone. Like, domain redirecting and I’ve got cards printed with this URL and all of my email addresses and then what the hell do I do with gifhy.com? I’ve already got two other domains that are just old sites parked somewhere because I can’t bear to bring them down.

And then I had a thought. (It’s rare, but it occurs.) One minor complaint I’ve had about this site is that someone couldn’t freely share it because of the swearing. And I often get people self-editing themselves when they tell me about a bad day, “I feel stupid ranting about this to you when you’ve got real problems”. And that? That is a rant on its own. Which you’ll see. Because it occurs to me that there are a million and one little complaints that we have, all the time, and we don’t feel like we’re allowed to express it properly. We have to be calm and collected instead of just screaming FUCK FUCKFUCKING FUCKER FUCKHEADS!!! at the top of our voice. This site isn’t meant to be nothing but sweary rants, but being allowed to DO that here has brought me peace and catharsis. And I think more people could use that.

I don’t know if it will be a thing people use, but I’ve registered lalochezia.com and I’ve created a safe space for us to vent. Create an account. Prove to me you’re human. And then write about what makes you angry. Use as many swears as you like. The more the better. Complain about everything. Your shitty boss. The barista that shortchanged you. Your vague sense of discomfort and displacement in a dispassionate universe. Or just write the word FUCK 270 times if that makes you feel better.

Let’s fuck shit up.

Betrayal

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

So.

Falling down.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yeah!

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

SHE HAS A POINT.

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

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

Oh. Right.

hahah fuck you loser

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

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

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

ok man whatever hey body you ready to do this shit

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

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

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

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

…dick move, brain.

just saying

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

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

Ok. I’ll get us there. Just go slow.

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

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

Can we get ice cream afterwards?

fuck yeah ice cream

Hell yes we can. Let’s do this shit.

Complicated

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

“Complicated.”

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

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

They’re both right.

…It’s complicated.

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

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

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

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

It was complicated.

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

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

It’s complicated.

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

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

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

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

Legal

Man, real life is just NOT going to give me a break lately! Sorry! But it’s also awesome that I’m still able to DO so much and keep up with what I’m being asked to do. So I will take this all optimistically.

Anyway. The lawyer.

First of all, we used the Crowdrise funds to pay for it, which I felt weird about, but that’s precisely what that fund is for. So it was $650 NOT out of my pocket. Yay! Thank you everyone who donated to that. I love you. For reals. I’ve put off this legal appointment for a long time because I simply couldn’t afford it.

We were recommended to use a particular elder care lawyer, who had a lot of dealings with ALS patients. For lack of knowing what the hell we were doing anyway, we went with him. He had the stereotypical swanky corner office with floor to ceiling windows, nice couches. I was completely intimidated, I won’t lie. Everything about the place said “You can’t afford this.”

We explained what my situation was. Dying of ALS, need to get my affairs in order. We explained what we wanted. Answers on particular laws and financial advice. I’d filled out a questionnaire (why does that word have two Ns? Millionaire doesn’t. Weird.) that detailed my pathetic assets. Which basically amounted to the life insurance policy through my employer and a little bit of 401k, and my house. Which I still owe almost everything on because I’ve only lived there a year.

(Goddammit. One fucking year. FUCK!)

I told him I was planning to sell the house and buy something single-story. He looked at me like I was on drugs and told me he would absolutely not advise buying another house. I’m not going to get any financial benefit out of it, he told me. It’s going to be nothing but a money sink. Consider renting. There are laws that say landlords HAVE to let you remodel to be ADA compliant. There’s subsidized disabled housing, too, but the wait list is like 2 years and I’m not even actually disabled yet so I can’t even START that process. So why he brought it up I don’t know.

Danielle (my bestie and primary caregiver to be) and Gecko (my brother and finance manager when I die) were with me, and both had a lot of very good questions. Danielle asked about Medicare and Medicaid, what they would cover, how would we/what will be appropriate procedures to move me to assisted care living, ten fifteen twenty years down the road when I need it?

He looked genuinely surprised. “Ten years? Did the doctor give you that long?”

Um. “I have an extremely slow progression,” I told him. “Two years since I noticed a problem and I’m still walking.”

“OH. Oh okay. Okay. Buying another house is NOT so far fetched,” he told me. “Usually when people come to me, they have a small handful of years left. Three maybe. Buying a house you’re only going to have for three years is not advised, but you’ll get benefit out of it if you live there for ten.”

We talked about in-home care vs assisted living. How much worth you have and how much you have to use up before Medicaid kicks in. Living on SSI and how much money you get to keep (hint: HARDLY ANYTHING). In assisted living? It was like $20. That’s all you get. They take care of your housing and food and medical care, sure, but entertainment? Clothes? Toiletries? if you have a cat? You’d better figure it out because $20 is all you get. If you live at home you get to keep more of it, but of course you have to deal with mortgage and bills and food on your own. It’s REALLY not a lot.

So, hope you’re independently wealthy! Cause otherwise your life is going to be small and hollow. Sorry your disease sucks, but let’s make it worse by bogging you down with money woes and bureaucracy and complicated decisions! What can you afford? Nothing! A small bed in the corner of a nursing home somewhere where we’ll tuck you away there until you die.

We talked about executors of estate, who I want to have as my finance controller, who I want to be in charge of medical decisions. He gathered information and after the appointment he mailed me papers to certify all of that. He told me to get my living will in order and spread copies of that to everyone. He also said we need to draw up my will to state who gets what portion of what assets I’ll have, and I can attach a sheet later dividing up physical goods.

I kind of froze. Who gets what? I don’t fucking know. I threw out some percentiles, and Danielle insisted she did not need to be figured in there anywhere but if anyone deserves ANYTHING when I die then holy fucking SHIT is it Danielle. My brother Justin a close second. Gecko third, for being willing to deal with all my debts and shit when I’m dead.

Though I DID find out that when I die, Gecko will NOT be responsible for dealing with my debts. With very small exceptions (that I do not have), those debts get written off when I die. “I’m not suggesting you go run up your credit cards,” he cautioned with a shrug. “But.”

When we left, my brain was full of doom and money and gloom and responsibility and numbers, so many fucking numbers. What’s fair. What’s right. What’s necessary. Next steps. Long term, but not long long term because you never know. I was keenly aware of my situation. How little resources I have. How much money it’s going to take to keep me alive. How little time I have to save any of it.

I was completely overwhelmed, and really wishing I drank at all.

It’s a fucking complicated thing, dying. And it seriously is unfair that this diagnosis does not come with a lawyer, an administrative assistant, and a kitten.

Walking While I Still Can.

Yesterday was a very ALS-centric day.

Some days I kinda forget I have it. Some days it’s in my face. And some nights it breaks my heart. It’s okay, it’s just going to be like that. This is my life now. It’s not necessarily bad, it’s just …different.

Almost a month ago, the group leader for the American Veterans employee resource group at Intel reached out to me, asking if I would be interested in being involved in an event they were creating. For some reason, veterans are TWICE as likely to get ALS, and for this quarter, his group is working to promote awareness of the disease. I said I’d be happy to, and yesterday they had a table set up in our cafe. I went down to meet him in person and talk a bit, and there was another person manning the booth that actually had ALS.

Mannnnnnnnnn did that guy talk. And have opinions. When I told him how my symptoms were presenting, how for now I’ve just got trouble walking and use braces, he cut me off with, “That’s not ALS. That’s Primary Lateral Sclerosis. You need symptoms in both legs AND arms.”

“…which I HAVE,” I told him, and was ABOUT to tell him if he’d let me finish. “Stabs and shocks showed weakness in my arms, and I’ve got hyperreflexia in my jaw.”

“Oh. That’s ALS,” he conceded.

…Dude. Just because you HAVE a disease, you don’t automatically get more knowledge and authority than the neurologist that diagnosed me. Specially not Dr. Goslin. He also said it’s pretty much guaranteed that I’ll be suicidal sometime, but “don’t make any decisions at midnight. And don’t look at the computer after dark. Wait until the morning, things will look better.” I’m not sure about the “you will be suicidal” bit, but…yeah.

The two of them were promoting awareness about ALS, and recruiting people for the Portland Walk Against ALS. I got talked in to forming a team. I’m…not good at asking people for anything, much less money. This is important, though, so I’ll do it. And I am. Here!

http://webor.alsa.org/goto/TheGodzillaSquad

After a lot of thinking, I went with The Godzilla Squad as a team name. My other favorite suggestions were “The Walking Not-Dead-Thanks-For-Asking”, “Wokka Wokka Wokka”, and “Bracing for A Cure!”

I was kind of overwhelmed by that guy manning the booth, specially as later that day I was going to attend the first support group. Good god, what if the whole meeting is like this? I mean…really nice guy! Knew a lot! But …overbearing and a little argumentative? I’m a pretty meek person (stop laughing) in real life and he just kind of bowled me over. So I had a little trepidation when I left work for the support group.

I arrived craaaaaaazy early. Danielle met me there, and we snaked out for bubble tea before the meeting started. She has the best ideas. There were not many people there at first, though eventually there were about 20 of us. There were two people in chairs, a couple with canes, and one with this awesome walker thing that I’m gonna try for when things get that bad. It had a built in seat and brakes and everything! The idea of walking around with a guaranteed place to sit down when I got tired is AWESOME. He was pretty funny, too. One of the men in chairs had his wife and caretaker with him – he had slurred speech and a great attitude. He presented everyone with a list he’d compiled himself of how often Medicare replaced components on CPAP/BIPAP machines, because it’s not something they ever TELL you. I’m sure the laws will be different by the time I need that information, but it was awesome that he had taken the time to dig that up and present it to the community at large.

We went around and did introductions, of course. I found out that out of the maybe 8 of us with ALS in the room, 3 of us had been diagnosed in April. What the hell. I introduced myself, and told them that Danielle was amazing and wonderful, and she got a little misty. heh. What I FORGOT to say, was “You bitches have NO IDEA how much of an asset you won through my diagnosis. Danielle and I are both power planners, but she is ALL about the marketing and the data gathering and the everything. She is amazing and you are lucky to have access to her.”

The meeting was an hour and a half, but the bulk of it was dedicated to a show-and-tell with assistive devices. They showed everyone what AFOs were, and talked a little bit about options. Several of us had them, and we talked a little bit about our experiences with them. We were showed a power chair, and they talked at length about all of the options available with the seat cushions and controls and front vs rear vs mid drive. I had NO idea you could recline those things until you’re practically prone. I mean, it makes sense that you COULD but it never occurred to me. The two gents with the chairs happily demonstrated their capabilities. It was really informative, but I wish we’d had more time to just chat. Maybe the next one. I may not be able to convince my boss to let me go monthly, but maybe every other.

We had to bug out a little early to go to my therapist so Danielle could meet him. And then we went to a French bakery and had a delightfully snooty waiter (“We’ll take the cheese plate.” “No. Take the brie.” “”..okay, we’ll have the baked brie.” And his suggestions were all on point, but we disappointed him by not liking chocolate so we didn’t go with his dessert suggestions.) and some fancy delicious food.

And it was a really good day. I wasn’t crushed under the weight of what my future holds, it was actually good to see people in more advanced stages who are still doing just fine, thank you. It was nice to talk to a therapist with my primary caregiver to make sure we understand expectations (which really amounted to, I need to get over it and let people who love me do nice things for me). It was nice to volunteer to participate in the walk (teasingly coerced though I was). I hope that all goes well.

But overall? I was reminded again and again and again that I have a terminal disease, and it’s going to cause a lot of complications, but I felt like…it’s okay. It’s going to be fine. I really felt like I have a handle on this for now. And when I don’t, I have people who will step up and help.

The Interview

I’m very, very glad I took the whole day off. Social anxiety is exhausting!

The reporter was scheduled to come at 9. Shana, the Assistive Technology Services Coordinator for my local chapter of ALSA, showed up early so we could devise our battle plan. I really like Shana – she’s good people. We met for lunch Tuesday, and I liked her instantly. The reporter ended up being late, due to “breaking news” (there was an officer involved shooting that morning), so we just hung out for awhile while my nephew’s cat Brobee whored himself alllllllllllllllll over her. Seriously, that cat is ridiculous. Luckily, Shana is also cat owned, so she was nice about it.

The reporter and Camera Guy Pete arrived around 9:30, and they…were both really nice people, actually. I was kind of expecting someone plasticky and false, but she was very nice, and won me over when she not only said hi to Brobee, but pulled up a picture of HER cat on her phone. Cats. They bring people together. Hehe. They set up the camera at my dining table, and then the interview was…very quick and informal and I hope to GOD I was half articulate. She asked how old I was, when I was diagnosed, and was surprised when I said just this last April. She asked several questions about voice banking, and I hope I came across as passionate and not stupidnerdy about the whole thing. And then she asked how ALS has affected me so far, because she’s not seeing it.

“Well there’s these,” I said, swinging my legs around. I wore a knee length skirt that morning, with purple houndstooth knee socks, so the braces were not in your face, but not hidden either.

“Oh, I didn’t even realize that’s what they were. I thought maybe they were..a goth thing?” hahahhaha what.

“Well I’m going to replace the velcro with leather, so it will seem even more intentional then, ” I told her.

They interviewed Shana on my couch, next, and she was very passionate and bubbly and full of hope and information. Awesome. They filmed me walking up the stairs, and then we set up in my office. Shana sat next to me while I did the thing, and I showed them around the very simple ModelTalker software. I recorded a couple of simple phrases, demonstrating how I could play it back. Marilyn (by the way, the reporter’s name is Marilyn. Probably shoulda said. It’s the same name as my mom, so that was weird.) asked me about banking custom phrases, and Shana explained that’s not really ModelTalker, that’s just something separate that you can do; make a recording of your own phrases and then put them along with the Artificial You on your soundboard so you can just hit a button to say “WORD UP HOME SKILLETS” or whatever. She asked if I could do some of that, so I pulled up Adobe Audition and recorded “Seriously? …SERIOUSLY.” for her, and played it back, and showed how I could crop the file to just include the phrase. She asked me to record “I love you” so I did that, and then, with Shana’s giggling prompting, I recorded, “You are getting on what might actually be my last nerve.”

It was glorious.

And then I looked over at my doorway and the reporter was stifling a laugh so I felt a lot better about the whole thing.

Pete filmed me walking down the stairs, and then filmed me in my kitchen pretending to bake something. Well I was actually baking, but mostly it was waiting for eggs to become meringue for macarons. (Which didn’t even turn out in the end because I was super distracted and not doing it properly, but they still tasted okay.) They packed up, then, and all said their goodbyes and headed off to talk to the other woman involved in this story, who is much further along her progression and uses ModelTalker. She’s apparently on a vent, so the idea of us all meeting at my house was laughable.

It was around 11 then, so I played around with Sims3 for about an hour and then took a nap for four.

Overall, I think it went okay. Hopefully I was semi-articulate, and was able to convey some of the awesome energy I feel about the ModelTalker option. BECAUSE VOICE BANKING IS AMAZING. They assured me I did alright. Marilyn said that the story isn’t likely to run next week, but the week after; but she’d email us to tell us when.

And when I know, I’ll let YOU know.

Socialsssszzzz

heh. Now you can like my posts.

I AM AN ATTENTION WHORE APPARENTLY.

Seriously, though, as much as it probably came across as needy and weird when I replied to a comment to the effect that “OMG THX 4 UR COMMENTZ” on that last post, I really do love to hear you guys. YouTube aside, sometimes the comments are the best part of a blog. Besides, no matter who you are, when you are going through something rough, you can get lonely. Even surrounded by people. And sometimes it’s enough to know you’re heard.

So thank you, for letting me hear your voices, too.

The Rules and Regulations to Rituals and Reminders.

When I get up in the morning, once I’ve managed to drag my ass out of bed (NOoooooo sleep is my favorite hobby), this is what I have for breakfast. 8 pills and enough juice to wash ’em down.

one pill makes you larger....
Delicious.

And then once I get to work, I have Second Breakfast!

"These are gonna make you hyper. Hyper hyper hyper."
Delicious and nutritious
Like some demented hobbit on a day pass.

George Carlin wrote in one of his books, “The sicker you get, the harder it is to remember if you took your medicine.” I’m finding it’s truer (more true? Truthier?) than I figured when I first read it. With the sixteen pills I take a day come rituals and reminders. You can’t just take some meds and be done with it. They all have their own rules and regulations and side effects. I have to take Riluzole on an empty stomach, it is very specific: “One hour before or two hours after eating”. And then prednisone has to be taken with food. I have to take them both in the morning, so I have to create a behavior that takes those rules into consideration. I take the Riluzole along with everything else in the morning (so it’s not technically an empty stomach, sure, but pills aren’t food, even if the dinosaur multi and the vitamin C ARE chewable). It takes me about an hour to get to work, so by the time I get in, I can take the prednisone. So I have something to eat and then swallow a couple pills. I have a reminder set at 2PM to take my second dose of gabapentin. And then another at 4:30 to take the other Riluzole, so that an hour’s gone by when I get home and start thinking about dinner. When I get home, another three pills wait for me – the second daily dose of buproprion and ranitidine, and the magnesium supplement. At ten PM, another alarm goes off on my phone and I take the day’s final gabapentin.

Six appointments a day. For medicine.

Thank the merciful LORD ABOVE for technology. I don’t know how people did this before phone alerts. I’ve forgotten to brush my teeth some mornings, how the hell am I supposed to be able to remember at what times to take what? So I rely on my phone’s alarm function and one of those stupid little day-of-the-week pill boxes with night and day dose rows. Once a week, I tip the right pills in the right boxes, and then just empty the right one into my hand when I head downstairs to work and swallow them before I leave. And then there’s three bottles of pills in my drawer at work, to be accessed at the right time. I have pills EVERYWHERE. And I should have a small stash of those three pills in my bag, in case I go somewhere on a weekend. Again, a George Carlin quote. “Now you’ve got shit all over the WORRRRLD!”

The sicker I get, the more pills I’m going to have to take.

The sicker I get, the harder it is going to be to remember if I took my medicine.

It’s an obstacle I’ll overcome when I get to it. I’ll have to. At least my phone isn’t affected by all of this – the sicker I get, my phone don’t GIVE a shit – so as long as that works, I’m set. …As long as I remember to take it with me. These rituals and reminders are part of my life now, and that’s okay. It’s not bad, just different. Just one more habit I have to form, one more shift in my lifestyle. And someday I might have a feeding tube, so I won’t even have to swallow the little fuckers. Just bloop bloop bloop, in they go.

As long as I remember to have my phone, to remind me take them.

Home Owned

For the longest time, I never thought I’d want to own a house. It seemed like a lot of work, and a lot of money, for little reward. I got married, and the idea of owning a house didn’t seem so bad, but still way more work and money than I ever wanted to put in to it. The marriage ended, and I had a three bedroom rental house to myself, and..I liked it. I could put whatever I wanted, wherever I wanted. I could cut out the place and make it my own.

Almost.

I could paint, sure, but..it still belonged to someone else, and the yard was the size of a postage stamp. I wanted a garden. Fruit trees. A yard I could sit in the shade in, and read books. Build a catio, hang out with my cats while I tended the garden. Suddenly I could see myself owning my own house. So I did some math, and some future projecting, and I applied for preapproval, and got accepted. So suddenly I was house hunting. That took FOREVER. And when I finally found the house I wanted, the house I could see myself living in for the foreseeable future, it turned into a short-sale fiasco that took six months of babysitting for signatures and phone calls and a lot of work from the most excellent real estate broker in Portland. (Seriously, if you live here and are in the market, hit me up for her contact info. I love her. She’ll do amazing things for you.)

But finally, finally finally the house was mine. I took possession of it in June of last year. It is, of course, a traditional two story house. Because I don’t like ranch style houses.

I’d only been noticing a problem for about 7 months by then, and they were so, so minor. A little hitch in my walk by the time I got the keys. Certainly nothing to freak out about. I’d started the gamut of doctor appointments maybe two weeks before I got the keys, and over the course of the initial appointments, when I found out that it might be a hip problem needing surgery, I made mental plans of setting up a futon downstairs while I recovered from surgery, but went ahead with all of the flooring and painting that needed doing. And time went by, and I worked on the house, and the limp got a bit worse, and it went from me not having a problem at all with stairs to me using the hand rail more often than not to now, where I need the hand rail to go up and can not carry anything down the stairs requiring two hands.

So now, here I am, in a house I fought for, that I can’t stay in. The layout of it is such that it is ENTIRELY unpractical to think I can still live here when it becomes necessary to use a wheelchair. Even with a stair lift, the doorways are too narrow and everything – my office, the library, my bedroom – is upstairs and there’s no practical place to have a bedroom downstairs. And no way at all to modify the half-bath into a full with a roll-in shower, certainly.

I’m going to have to sell this house. There’s absolutely no question.

The question I’m dealing with now, though, is this: Do I sell and just rent a place for as long as I can live alone? Or do I sell it and buy a single story, smaller house? And if I buy a single story, when? Should I wait for the last minute, until I just can’t even do the stairs anymore? I mean I haven’t even owned this house for a YEAR yet. Or do I start working on that NOW, so that I can buy a house and make it my own while I am still physically able? I was advised to make the necessary renovations as soon as possible.

Just, FUCK.

Fuck fuck fuck.

I don’t want to leave this house. I love it. It’s got its problems, but I’ve got plans. I JUST got my office done where I like it – and since ‘where I like it’ involves…lemme count here…26 wall shelves full of toys, 3 bookcases full of binders and books and toys, and a zillion plastic drawers with all of my computer parts and crafty shit..that was a HELL of a lot of doing. And the ceiling slopes from 11 feet on one end to 7 on the other, and the 11 foot wall is FULL of shelves with toys/models/ stuff. It took me a lot of hours on a 7 foot ladder to get all that up there. And I don’t think I could do that again. I have a ceiling fan that needs an extension put on so the blades can turn without hitting the slope of the ceiling, and I’m not allowed, says my brother, to climb up there myself and do it. The thought of having to pull all of that down again, when I only just fucking got it UP, actually sends me into a precursor of a panic attack. IT TOOK HOURS. It FINALLY feels like I live in here. And to have to pull it all apart and move it again.

FUCK.

But the alternative is to wait too long. And then someone else will have to pull it down for me. And then put it back up in a new house. Or I move in to an apartment, and it probably does not get put back up at all. And I spend the rest of my shortened life living somewhere that doesn’t feel like it’s mine.

So what do I do?

Do I abandon the house I wanted, and finish what I absolutely must in order to sell the place? And sooner than later? Leaving the vision I had of this place unfinished?

Do I go through the whole rigmarole of home searching again? It was SO MUCH FUCKING WORK. SO. SO. MUCH.

And then holy FUCK the whole MOVING thing. I HATE packing. At least this time, hiring movers isn’t even a question, but it cost me a thousand goddamned dollars to do it. I don’t have a thousand dollars to move. I don’t feel like I have the energy to pack my shit.

And then if I buy a new house, then I have to renovate the fucking place, sooner than later.

I just wanted a place of my own that looked how I wanted it to look, with honeycrisp apple trees in the back yard, a nice big kitchen where I could turn those apples in to pies in, and a quiet space to live alone. And now I can’t have that. But do I give it up now or later? Do I wait for it to become an issue? Or do I preemptively resolve long term issues now while I have the strength and the ability? How long do I let life happen to me before I do something about this?

Why couldn’t I have been diagnosed BEFORE I bought the place, dammit?!

Just..FUCK!

I have a lot of hard choices to make, and there’s a lot of work ahead of me regardless. I suppose to real question, is do I want to have a hand in that work and a choice in how things turn out, or do I wait too long to be able to do this myself and have those choices made FOR me. I’m not too hot on other people deciding my future for me. It’s bad enough this goddamned disease is telling me what’s going to be allowed (not that I’m listening), but to leave everything I DO have a choice about, up to loved ones when it’s too late for me to have a say is pretty much bullshit.

I’ve never just allowed life to happen to me, I’m not about to start now.

But this is a really huge, expensive, work-intensive decision. I have some time, but not a lot, to think about it. At least I’ve already made a profit on the house – it was appraised at more than I locked the offer in. So hooray for that. I guess my first step is to call my realtor and ask for her advice.

But first, apparently, I’m going to whine on the internet about it.