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.

I’m still alive

I’m doing science and I’m still alive!

I am still doin stuff, and I have things to tell you, but a total lack of the time to write it up. Man. Life is crazy but it’s good that I have the energy to keep up with it still. I still need to tell you about the lawyer, and other things.

This weekend, my bestest and mainest of babes is throwing a huge-ass garage sale to fund my crowdrise campaign. She’s been working incredibly hard on it and I can’t even tell you how much I love her.

I hope you guys are doing well. <3

Oh yes.

Since I’m keeping record. I had another sorta-fall yesterday. I was just having a weak day, the walk to the bus took me a half hour and I was DRENCHED in sweat by the time I got there. The bus came at 12:18 and I did not stop sweating until like….1:30. It was a bit muggy, raining on and off, but man. It took SO MUCH EFFORT.

The bus did the kneeling thing, lowering to what would be curb level – but it was still a high step because that stop is on the street. I pulled myself up on the handrails and I just didn’t have the strength to make it up and I wound up kneeling myself. It took me a second to haul myself to my feet, and while I was paying my fare and showing the Honored Citizen ID that proved I qualified for the low fare, I thought, “Well I just kinda negated the need to show him the ID, he just got a demonstration.”

Another slight bruise on my knee, another slight bruise on my ego.

TMI : The Bleedies

Soooooo in the days, months, years ahead, there’s gonna be a lot of uncomfortable stuff. Things you don’t talk about in polite company. But the point of this blog is to document EVERYTHING, and well, I know some people are curious about this sort of thing. SO let me educate you.

If talking about shark week, Vampire tea parties, communists in the funhouse, girl flu, a red light special downtown, a crime scene in your pants, or rebooting the ovarian operating system makes you feel uncomfortable or squicky? Then now’s your time to bail. Here’s a picture of kittens to wipe your mind clear.

Still with me? Okay.

While contemplating everything after my diagnosis, envisioning my future, thinking about all the practicalities, it occurred to me. What the hell am I going to do about my period? I imagine MOST people with ALS have already gone through menopause so it might not be a common question. But it’s just one more damned thing to deal with, that I am not going to be able to take care of myself. And some nurse dealing with that? Man, why. So I brought it up with Doctor Goslin, and she said when the time came, I could talk to my primary about options.

I decided the time had come.

I wanted to start the process now, when I could still deal with it under my own power and remain in complete control. And I wanted to give myself time to adjust to any side effects NOW, to allow enough time to go by to make sure that I had it under control before life was beyond my own control. I decided to go to Planned Parenthood instead of my primary, because they’d have all of the information about ALL of the methods. I wanted options and informed decisions. I did a lot of research on my own, and I really liked the idea of the implant, but that wasn’t a guaranteed stop to menstruation. So I went with an open mind.

It took me a little bit to find it, but it was made easier by the honest to god protest happening outside. Fetus posters and everything. They didn’t fuck with me though, they just stood across the street singing hymns. There was a sign in the upstairs window that said, “Hello protesters! Donors have agreed to give $37 for every one of you that shows up today! Thank you for coming!”


Mannnnnnnnn it took FOREVER. I was half an hour early to my appointment and was taken back 45 minutes after my appointment time. I talked a little bit about it to the aide, she gave me some preliminary information, asked if I wanted AIDS and siphyllis/gonorrhea testing, was I being abused, had I ever been pressured into sex, did I feel safe at home? no, no, no and yes, thank you, I’m fine. She also reminded me it had been 4 years since I’ve had That Thing That Really Sucks and they recommend it every three. Would I like to take care of that today. BOOOOOOOOOOOOOOOkay FINE.

So the clinician came in and we had a long chat about all of the options. Half of them were out because I have a history of headaches and migraines which estrogen would exacerbate. The implant was not recommended because not only is it NOT a guaranteed end to menstruation, the effects vary wildly. Some women get heavier periods. Some women get spotting, some have irregular and unpredictable flows. So that was out. Which is a SHAME because I’d really like to only have to think about this once every three years, and the idea of a little plastic matchstick under my skin on my arm is creepycool.

We decided on depo-provera. It’s a shot in the arm, once every three months. It’s a hormone called progestin, a slow release that prevents ovulation. She told me that she has another woman who comes in regularly with her developmentally disabled daughter, and the daughter gets the shot as a matter of hygiene so it’s not at all an unheard of application. She had me take a routine pregnancy test first. Just cause. Even though it would be a second-in-history MIRACLE if I were. We did the Thing That Really Sucks, and then she stabbed me in the arm with a needle and I was sent on my way.

My arm’s a little sore. I was told I might gain weight, so maybe just be a little careful about what I eat, and depo CAN cause bone brittleness (yay?) so take calcium. I’ll see how this goes from here. When I left, the protesters were gone and it started raining BUCKETS as I walked to the train stop. A really amazingly nice woman shared her umbrella with me, because of course I didn’t have one. This is Portland man, we don’t believe in umbrellas (SPOILER: YES WE TOTALLY DO. It’s just that it doesn’t usually RAIN here, just this nagging persistent drizzle that only barely counts as rain and you don’t need an umbrella for that you sissy. But when a half block walk had me soaked to the skin? Yes, yes I WOULD like an umbrella. Thank you, lovely lady.)

We will see how this goes. I’ll keep you updated. And now you have an answer to a question you might have been afraid to ask, or didn’t occur to you. So when someone asks, what do women with ALS do about their periods? Now you totally know.

Here’s another excellent primer

Caitlin Doughty is a mortician. I can go on about this woman, about her job, the relationship we as a society have with her job, buuuuut I won’t. Not yet anyway. BUT I agree with her views, she’s entertaining, and I love her a lot.

She has a video about how to deal with grief. Specifically, how to talk to someone who is grieving. It’s good advice when dealing with people going through terrible times in general.

Checking Up With DocGos!

Man, I can’t even tell you how busy – STUPID busy – I’ve been. Sorry. I should have posted this one ages ago (last week) because it’s a quick check in.

I had another check-in with Doctor Goslin last Wednesday. It was a strength check, a meds adjustment check, and a general well-being lookover. I’d messaged her earlier with some concerns about my energy levels and OH MY GOD that became a whole thing because my insurance decided to be awful.

So, my energy levels have been in the toilet. Seriously in the toilet. Friday nights I was going to bed around 11, my usual bedtime. And sleeping until 2 in the afternoon. And then taking a nap at 5 until 8. And then back to bed at midnight. During the six hours I was awake, I accomplished nothing. Not even ‘played a video game’ “nothing”, just…stared at the internet and/or watched tv shows I’ve seen a million times and know by heart “nothing”. I like sleep, don’t get me wrong, and I’ve historically spent entire weekends sleeping a whooooole lot. But it’s not something I’m doing for enjoyment anymore. I sleep because I’m THAT freakin’ tired. Unfortunately I’m not really in a position to be able to waste time.

So as I posted before, she called me that evening and we set things up to get me a scrip for adderall. It’s a controlled substance – because let’s be honest, it’s legal meth – so I had to wait for a physical prescription could be mailed to me. We also started me on a low dose of Celexa to supplement the Wellbutrin I’m already taking for depression, because Celexa has better anti-anxiety properties and my fatigue COULD be caused or at least exasperated by depression. I got the scrip, took it in to the local Frederick Meyers..

…and was told Cigna wouldn’t pay for the adderall because they don’t approve of its use in people over 19 years old.

Thus began the Dance of the Morons, where we appealed, they said no, Dr. Goslin tried to clever her way around the restriction, and was shut down again because they do not cover adderall as a treatment for fatigue in ALS patients. But they WILL cover it for MS patients.


Only mine is a guaranteed death sentence, but whatever.

SO they said no every possible way they could in response to every single way we tried to weasel through it. In defeat, during our checkup appointment I was given samples (a lot of samples) of a drug called Nuvigil, which is for sleep apnea, narcolepsy, and shift work disorder.

…I didn’t know there was such a thing as Shift Work Disorder either.

It’s diagnosed for people who work widely varied shifts, like nurses, to stay awake when they are working crappy hours. Just like it says on the tin. Anyway. Yeah. She gave me samples of that. We also doubled my Celexa dose, to be slowly ramped up over two weeks.

We also checked my strength, and she saw no change at all since I saw her two months ago. This is AWESOME. Super slow progression FTW. As she put it, she’d very likely be seeing me for years and years to come. Yayyyyyyy <3 During the visit we also chatted a little bit about assisted suicide, but that...that is its own post. That's been brought up a lot lately, and I want to talk about that. Later though. Later. So in the end of the appointment, she was really happy about how well I'm maintaining my strength, and she saw no reason to see me for another three months (but I'm welcome to email her with questions or concerns of course). I had been scheduled for a clinic day soon, but she canceled that because I don't need it. I started the Nuvigil the next day, and it seemed like I was a little more awake. Friday, a little better. Saurday? I slept until 9AM, screwed around on the internet for awhile, wrote that last emotionally draining post, and then took a nap from noon to two - because I WANTED to. And then I went through my closet and got rid of two bags of clothes, cleaned all the catboxes, tidied my room, went through some things in my office....SUPER productive day. I felt pretty normal. So, Nuvigil is awesome. I'm not sure what we're going to do about that in the long run. We'll figure things out. She always does. So that's the haps, man. I'm doing good. Meds are helping me retain a normal level of activity, my strength remains unchanged, and life is pretty freakin' great.

Without Music, I’d Be Lost.

I saw Zoë Keating in concert last night. She’s an amazing musician who makes sublime music with a cello and some looping software.

Do me a favor. In another tab, open this link. Listen to it as you read this. The piece you are hopefully listening to is called Escape Artist. It’s my favorite. I love the places it takes me, the way I feel, and the calm it brings.

My other favorite is a piece called Optimist, and it’s always been One Of Those Songs. You know. You hear it and it hits you and it’s like, “FUCK, man, this is my song. This is me. This is everything I’ve been trying to SAY.” And while Escape Artist is my favorite because of the emotional and mental places it takes me, Optimist was My Song. It was an embodiment of what I am to my core, the thing I’ve always wanted to be, who and what I am when I take off the mask. My philosophy, my purpose, my soul, conveyed in cello and software. Artistry and technology.

Optimism has been high this week, but it’s been put through the paces. It’s been a week of The ALS Show. The whole weekend was about the Walk, which gave me a boost of love and support. At the end, though, the whole day was a reminder of my disease, and a display of it’s various stages, a glimpse into my future with it. Monday my carpool was traveling so I walked to the bus and I was tired from it all day. Tuesday I had all kinds of job stress because I’ve turned into our purchasing/finance person and it was the end of the quarter. Wednesday I had the appointment with Dr. Goslin. Thursday I had a meeting with the Elder Care attorney and faced a lot of important but terrible decisions. And then a meeting with my amazing realtor and talked frankly about the practicalities of buying a house when I know I’m not going to stay there forever because eventually I am GOING to have to live in a nursing facility until the end. Friday, work was harsh, there was physical labor and stressy conversations, and then the concert. Finally. The concert.

I sat in a dark room, with strangers, listening to my soul resonating. And out of nowhere, I had the thought:

This is what I want to hear as I die.

It just came as a true statement, and I could clearly imagine this sublime music playing as I slipped away, and everything would be calm and perfect. I started crying, and it was a comforting, profound moment of perfect acceptance. I am going to die. And it is still going to be okay. I cried as I sat in the theater and listened to her pouring her heart out through her cello, and I knew for a fact that it was going to be alright. No one noticed that I was crying, it was just the music and I, and it was perfect and calm and connected. With astounding clarity, the universe reached out and touched my shoulder through her music, and whispered to me of comfort and love and understanding.

I keep this blog, and it helps me put order to chaos. I have a job, and it keeps me grounded. I have a fantastic, amazing support group, and they give me strength and hope to survive every day. I have music to keep me sane.

I am, at my heart, an optimist. I’m going to be okay. Somehow. Even if I die, that will be okay, too. It’s going to work out, and on days like this, in moments like this, I am in perfect peace and acceptance.

And now you should listen to Optimist. It would be a perfect end, for this to be the last thing I ever hear. And so I leave it here for you, with love and acceptance and faith that it really IS going to be okay.

I promise.

The Walk to Defeat ALS

Overwhelmed. In the BEST of ways.

I’ve gone on and on before about how grateful I am for the support I’ve gotten, how much I appreciate the support I’ve been given, how blown away at the love I’ve been shown. It’s probably become a little bit tiresome.

Well, suck it. There’s a lot more coming.

I admit I totally got press-ganged into doing the Walk in the first place. The Veterans Resource Group had a table in the cafe at work. I stopped by to chat, and met another person who ALSO had ALS for the first time. (I’ve met a fair few since then. We’re a small crew, but we run – or hobble or ride – in the same circles.) Part of the table’s purpose, besides awareness, was to recruit people for the Walk to Defeat ALS. “You should form a team,” I was told. “I bet you’d get a lot of support.”

I was of two opinions on that. On the one hand, it’s asking for something. I’m not good at that. On the other hand, a tiny irrational fear, ‘what if I form a team and no one shows up?’ While I was debating this in my head, a coworker walked up to the table to see what I was up to.

“Vashti’s making a walk team, do you want to join her?”

He looked at me, “You are?”

“I…uh. Apparently!”

And that’s how it started. I put up a poster outside my cube, I wore the red wristband, I talked openly and honestly about the diagnosis when I was asked, but I felt really weird about asking my friends to come over in support of me. I caved and asked my friends to help me name the team at least. We had a lot of really good suggestions, but in the end, The Godzilla Squad won out. On the 16th, I posted my team link.

On the 17th of August – the next DAY, for those of you playing at home – I was at 17 members and over $1000 raised.

To say I was overwhelmed is a gross understatement. So, fun fact! I’d never cried for joy before. I always thought it would be kind of cool if something like that happened to me, but I am not sentimental in the right ways, I guess, so it never happened. Until then.

The Ice Bucket Challenge gained serious momentum, and so did my team. On the 26th, I was at $3k and 26 people. A dear friend of mine in Sacramento also started a team in my name, Team Dinsdale. We met online waaaaaaaaaayyyyyyyy back in the day, before the Internet was a thing, when you had to dial directly in to someone’s computer and leave messages on a digital bulletin board. In the BBS days, my first handle was Dinsdale.

Life continued its usual frantic pace, there was a lot happening, and before I knew it, it was the final weekend. I had four people staying at my house to attend, and one flew in from Sacramento to be here for me. I was spoiled absolutely ROTTEN that weekend, with homemade Ethiopian food of amazingness, fancyface ice cream and donuts for dessert, and the best company a girl could ever ask for.

And then, Walk Day. This is my team:

Because ALS isn't going to stomp itself out.
Because ALS isn’t going to stomp itself out.

Amazing people, every one.

We gathered in a spot that was strategic and awesome until the live band started playing. Right. Bloody. There. But we were VERY easily distinguishable in the crowd with the hoodies (OMG SO AMAZING LEENDAH I LOVE YOU) and Danielle, my main babe, had printed out the kitten-vs-Godzilla picture I’d been using for my Walk page, and attached them to an umbrella. And Matt. Oh my golly Matt. He had commissioned a mighty cape of DOOM and a head cover for his staff:

Matt the Majestic


Yes of course it is, don’t even bother answering.

There were a LOT of people there. Oh my god so many. I’m really glad I had my team around me so I was constantly distracted by OH MY GOD HI I HAVEN’T SEEN YOU IN FOREVER instead of ..holy crap I am in the biggest of big crowds and this sucks. We borrowed wheelchairs,Danielle and I, because I can walk a mile, but it sucks, and I think three is out of the question. Danielle had to borrow one because her foot is borked and it hurts her a lot to be on her feet at ALL and walking three miles is similarly out of the question.

It was a FANTASTIC walk. Well. Roll. I got pushed. The chair was surprisingly easy to wheel myself around in, but I had a lot of people willing to help me out. There’d been cold and rain suddenly, but it cleared up in time to be LOVELY for the walk day. Even a little too warm to wear the hoodies all day, for they were made of fleece and are SO COMFY AND WARM but maybe not the best when standing for a while in direct sunlight. Megan was the smart one, she held the umbrella. Some surprise faces showed up – I didn’t expect my older brother there, he told me he had to work but then didn’t have to! – and met a couple new friend-of-friend faces and did not at ALL have time to introduce everybody to everybody. We walked a really pleasant stroll along the waterfront, and groups connected and drifted as we walked.

We finished, exultant, and some of us stayed for a picnic, and some of us had to get back on the road.

I am so. so. so incredibly grateful. I am grateful to everyone who came. Everyone who couldn’t come but donated. Everyone who couldn’t come OR donate, but thought about me.

In the end, my team was 49 members strong, more than 35 of whom showed up to walk, and $5460 raised.

I’ve always strived to be the kind of person someone would care deeply about, and like having around. I …I guess I managed that, if the support and love I’ve been shown is ANY kind of indicator.

I love you all. You’re amazing and the world is lucky to have you in it.

Updates Needed! ZoMG

Hello babies! I owe you storytime for a LOT of things. I will get to them this weekend! Probably!

I need to tell you about:

The walk!

Passport Drama!

Neuro Checkup!

New Meds!

Elder Care Attorney Appointment!

Probably Some Other Stuff!

My job has been absolutely CRAY CRAY so I haven’t even had time at lunch to update this. Bleh! I am still here though! And I love you!