Having a terminal disease means you can instantly delete all company mail about retirement advisers and road maps.
..I should probably look at my 401(k) and figure out how that’s going to figure in to disability and stuff when I can’t work anymore. I heard that there’s no early withdrawal penalties. But yeah, I’ll look that up.
It’d be nice, though, to still be working in 15 years or so. MY ADVICE FOR RETIREMENT PLANNING: PLAN TO RETIRE.
Okay so wow.
https://www.facebook.com/fox12oregon/posts/10152550068903701?comment_id=10152550463373701
I KNOW BETTER THAN TO READ COMMENTS ON THE INTERNET. I KNOW.
But this was important. This is something I care a lot about. If someone out there wants more information about this, I’d like to be able to step in and help out. And Jack asked if I’d seen them, and linked me, so I clicked.
Most of them? Lovely and supportive. Hooray for those people. I love them. And my friends who spoke up in support. I love you.
But a hearty FUCK YOU to the shitshark who felt compelled to comment “Pretty lady if she didn’t put all that metal in her face.” Yeah, I got enough of that oh, at EVERY FAMILY GATHERING GROWING UP EVER. And I didn’t give a shit about how my FAMILY felt about it, why the fuck would you think YOUR opinion matters to me? Get fucked SIDEWAYS. I didn’t have to weigh in though. My posse stepped up and put him straight before I got there. <3 These other ones, though. HOLY SHIT, people. "My father died because of ALS. He was one of four in one family. And I tell you to have the voice record is the smallest problem you will have when you have ALS!!!" "Mom passed from ALS in 93, not bn able to talk was the least of our worries. Absolutely horrible disease" …I've actually heard of people approaching someone with ALS and say, "It's going to get so much worse" ..AT A MOTHERFUCKING SUPPORT GROUP. GOD DAMN IT, PEOPLE. Here's a clue you are so DESPERATELY NEEDING: Telling someone with a terminal, degenerative disease "it's going to get worse" HAS NEVER BEEN USEFUL TO ANY ONE IN THE HISTORY OF FOR FUCKING EVER. The only one who get ANYTHING out of that is YOU because you get to feel OH SO FUCKING KNOWLEDGEABLE. Your dad has ALS so OBVIOUSLY YOU KNOW ALLLLL ABOUT IT and someone who actually HAS this disease HAS NO IDEA WHAT THEY ARE IN FOR so you had BETTER TELL THEM. Fuck you. Keep your fucking mouth shut. NEWSFLASH: You are NOT helping. You are NOT helping me prepare for the harsh realities of the disease. You are NOT educating me. You are not even freaking me out. You are JUST PISSING ME OFF. Let me educate YOU. When you are going through the medical rat maze of trials and tests, and ALS is among the possible exits, THEY TELL YOU ABOUT THE DISEASE. If you didn't know about it already, THEY TELL YOU WHAT IT IS. When you narrow it down, THEY TELL YOU A LOT MORE. If you don't do the sensible fucking thing and research it yourself, there are medically trained professionals who will talk to you about it. THE PROCESS OF DIAGNOSIS COMES WITH AN EDUCATION. And here's something I did NOT know. When you are diagnosed? THEY GIVE YOU BOOKS ABOUT IT. Seriously. Like, six of them. My diagnosis came with an appointment with a social worker, and she had books for me, a book for the people who would be my caregivers, and pamphlets about estate laws and wills and power of attorney. People bend over BACKWARDS to tell you anything you could possibly want to know. And by "people" I mean TRAINED AND LICENCED MEDICAL PROFESSIONALS and not "some stupid opinionated bitch on the internet." So let me be the first and hopefully last to let you know, you're not helping. You're not wise. You're obnoxious, detrimental to my emotional well being, and a waste of my time. It alllllllllllllll goes back to the Silk circle, and the magic phrase: "I'm sorry this is happening." Comfort in. Otherwise shut the fuck up. And if you make the mistake of telling me "it's going to get worse" to my face, I will obligingly tell you all of this in person. And just when you think I'm done yelling? It's going to get worse.
The interview I did aired last night; I sat in my living room with my brother and his wife and watched it streaming off his laptop to my television. I guess I didn’t look TOO stupid. She mispronounced my name, but it was otherwise a really good story and I’m happy I was a part of it.
Here it is!
http://www.kptv.com/story/25869456/als-patients-preserve-their-voice-with-voice-banking?autostart=true
So now the two of you who read this who don’t already know me personally know what I look and sound like. XD
I came in to work this morning to an email from a coworker:
I saw the story on KPDX regarding your diagnosis of ALS and the preparations for your future with this disease and wanted to reach out. I am the Employee Resource Group leader here in Oregon for the American Veterans ERG. If you were not aware, American Military members are twice as likely to contract ALS as the general population. The cause is yet unknown. Due to this connection between veterans and ALS, my ERG is using Q3 to promote ALS awareness here in Oregon.
I was reaching out to you to see if you would be interested in being involved in this event. I would love to be able to meet with you and talk to you about what we are planning to do in regards to raising awareness here at Intel. Feel free to call or email anytime so that we could arrange a meeting if you are interested in doing so.
I told him I’d be happy to be involved. I hope we figure out what the hell that correlation is someday, because yeah. Vets and ALS. Such a strange and scary statistic.
My facebook has been blowing up today, all kinds of people linking that video and tagging me, and SO MUCH SUPPORT and encouragement from those I love. Every day I learn how well I’m loved.
Hooray for getting more people aware of this stuff, and hooray for it being OVER so I can stop being nervous about it. Heh. “When she’s not baking, she’s banking.” I SEE WHAT YOU DID THERE, NEWS PERSON.
AKA: Things I Say That Apparently Only I Find Funny, Part Two
At my job, we go through a yearly review process called Focal. As a part of that, mid-year we do a baby Focal with our managers as a way to touch base with where we are, where we’re going, and how to get there.
I had the following conversation over work chat with my friend Jack:
Me: Can I list “was diagnosed with a terminal disease and successfully did NOT lose her shit” as a focal point?
*Organized
*Team-centric
*Dying
Jack: “Dying but upbeat! Until she dies.”
“Then no beat.”
Me: Areas for Improvement: Dancing.
Jack: Notable accomplishments: Swagger.
Me: Strengths: Pretending that any of your shit even matters, in the grand scheme.
Jack is one of my favorites because he goes with it and is even more horrible than I am.
Very little makes me quite as happy as random happy surprises in the mail. For this reason, I was an avid participant at http://redditgifts.com/ , where you sign up to send a random stranger a gift, and another random stranger sends YOU something. I got burned a couple of times, but overall, it was a lovely experience. I’m actually waiting on my Arbitrary Day exchange now! I was matched with someone in the Netherlands, I hope she likes what I gave her.
Awhile back, I set something up with my friends called Happy Boxes. The idea was similar, only you knew who your match was: me. I sent anyone who asked a box full of things that made me happy – things like cake sprinkles, finger puppets made into fridge magnets, candy, stickers, scented candles. In return, they’d send me something. I sent out ten boxes, and I think I got four back? But the ones I got back were awesome. My dear friend Marina went COMPLETELY overboard and sent me a huge box of baking supplies from King Arthur Flour. Another friend sent me a box chock full of awesome things she’d been collecting for me for some time.
It is a guarantee of happy. A complete cure for a wretched day.
I sent a message to my friends on facebook awhile ago, offering to do this again. I had some people tell me they were interested. But thennnnnnnn I bought the house, and then this whole Godzilla Disorder thing happened. So I lost track of the Happy Boxes, and they were relegated to the back burner. Maybe forever.
One of my friends, though, didn’t forget, and a three weeks ago, he sent me a message:
Hey Vash, check this out and gimme a yea or nay: http://www.lootcrate.com/
I thought he was asking for opinions before he got himself a subscription, so I told him I knew a couple of people who subscribed, and I’d heard that they were awesome!
And he told me he “would be honored to buy me a sub”.
And I blinked a few times. And had the most intense mental battle with myself. Because I have a really hard time accepting acts of kindness, as I’ve said before, but I’m ALSO trying to be more gracious about it when people offer to do awesome things for me. So I said okay.
It arrived yesterday, and it was FULL OF AMAZING THINGS including one of the best teeshirts ever. I raved about it to my facebook friends, and posted lots of pictures, and thanked him a lot. Because it was an incredibly sweet thing he did, and the timing was perfect as I’d had a REALLY rough week at work. And among the comments on my pictures, he posted this:
“I want to take a moment and explain my motivation, since this post may reach eyes that don’t know the whole story. For the record, I got permission from my wife before I offered to set this up.
I met Vashti Ross about 12 years ago. We worked together at Stream in a call center, and became friends (as much as two co-workers can become friends, anyway). Years later, we reconnected over Facebook, and I’ve watched the story of the ALS diagnosis.
When the ALS was confirmed, it broke my heart and I wanted to do something to help, but being a work buddy is pretty low on the relationship priority chain. Then, last month another friend Cameron at my current job posted about LootCrate, and I basically had a big House-style epiphany.
“kindness in.” There’s nothing I can do about the disease, and there’s probably a few dozen closer friends/relatives that can help with daily needs, but I sure as hell can add to the “happy moment” pile.
To quote The Doctor: “The way I see it, every life is a pile of good things and… bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t necessarily spoil the good things or make them unimportant.”
Vashti, I am thrilled that I’ve added to your pile of good things.”
Nathan is an amazingly sweet person. I also adore that he quoted the Silk Circle *AND* Doctor Who.
That whole “I don’t deserve this” definitely kicked in. MORE so, when he posted a referral link to that site, where every five people who subscribe through it gets me another month, and then my dearest friend Megan posted that link to her wall: “One of my dearest friends, Vashti, was recently diagnosed with ALS (http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis), and though there is nothing we can do about the stupid disease, there is plenty we can do to shower her with love while we can.”
Annnnnd my heart burst out of my chest and I felt so. Amazingly. Loved. And then another friend shared that link. And then another. I am completely overwhelmed by love. THERE IS GOOD IN THE WORLD AND I AM ITS UNWORTHY RECIPIENT. And while it’s LOVELY to get a box of awesome little nerdy geeky fun things, it’s the fact that someone out there, that I’ve not even SEEN for ten years, cared enough about me and wanted to lighten my load just a little bit….that..I’m not gonna lie, I totally teared up. Am doing so.
I am so so so grateful for the people in my life. In a comment thread on one of those posts, I told a friend-of-a-friend that I was lucky to have such an amazing support network. I didn’t have to ask for anything. When I looked up, everyone had their bags packed for this journey and were coming with me, whether I asked them to or not. “You ARE going to get over yourself and ask for help, and we WILL provide it. Now. What can we do for now?” I don’t know what I’ve done to deserve them all. You all. Every planet in my orbit.
It’s what will make the difference between simply surviving with this disease or living with it.
I never got to meet the other woman involved with the voice banking story; she’s much further along in her progression than I am, and it’s really hard for her to get around, so they did her segment at her house. She sent me an email yesterday, expressing regret that we didn’t meet. She asked if I had been to a support group yet, and told me “It can be a bit scary at first but you soon forget all that and come to enjoy the great people.”
Scary, maybe. Intimidating as all FUCK, certainly. I’m an introvert, I have social anxiety, I…don’t do well in crowds. Outwardly, I’m just fine. Inwardly, my mind is racing “oh shit oh shit she’s going to come talk to us oh shit shit shit what do I even SAY oh shit here she comes she’s asking our name WHAT DO WE TELL HER oh right our name that’s easy. Ask hers. ASK HERS. CASUAL. FUCK. WE ARE NEVER GOING TO REMEMBER THAT. I hope we never meet her again even though she seems nice because we won’t remember her name and it will be HUMILIATING and OH SHIT SHIT SHIT SHE IS ASKING ABOUT SOMETHING. WHAT IS IT. DO I HAVE KIDS. OH SHIT. WHAT’S THE POLITE WAY TO SAY FUCK NO NEVER NOT IN A MILLION YEARS YOU MUST BE JOKING? “I have cats and that’s close enough for me”? Really brain? That’s the best you could co..oh she’s laughing. GOOD JOB BRAIN HIGH FIVE. Oh but what if she’s laughing AT US. OH GOD WHAT TIME CAN WE LEAVE HOW LONG HAVE WE BEEN HERE oh five minutes, that’s all? Shit. Shit shit shit.”
All social interactions are scary to me. With strangers, exponentially so.
Though, I admit I do have some fears about going to support group. I know it’s going to be a harsh reality check to see people in advanced stages of my disease. I’m not sure I’m ready to be confronted with that. I already have a little bit of the “huh, that’s what the future looks like” when I see people in wheelchairs. Mostly that’s fascination, though. But my real fear is that the support group is going to be like the ALS forums.
Because CHEEEZUS MARY CHRISTMAS.
The fucking NEGATIVITY and SELF PITY and ENTITLEMENT. “ALS IS THE WORST THING EVER AND MY LIFE IS SHIT AND NO ONE UNDERSTANDS AND EVERYTHING IS TERRIBLE AND HOW DARE YOU HAVE FUN AT ALL WHEN I AM DYING SLOWLY YOU SELFISH FUCKERS.” And then there’s the constant “We lost a member today! RIP Twitchy Twitchertons, who lost his battle with ALS today.” Negativity and Mortality! Two great tastes that taste great together! YOU GOT YOUR OBITUARY IN MY COMPLAINT! YOU GOT YOUR SELF PITY IN MY FUNERAL ANNOUNCEMENT! *slow camera pan as they both realize that they can be miserable..TOGETHER! Fade out as they live happily ever afte….oh who am I kidding. They die alone after alienating everyone they ever knew* And scene. Print it.
I’m terrified that support groups are going to be live action reenactments of all that. Because my social anxiety would never let me stand up and say “SHUT THE FUCK UP, SALLY, LIFE IS REALLY NOT THAT BAD.” “Yes, Don, you’re DYING. So is EVERYONE ELSE EVERYWHERE. You are not a unique snowflake and your terminal disease is NOT licence to be a FUCKING DICK.”
…I’m so gonna print that on a bumper sticker.
Well, at least I won’t have to deal with the “Sometimes? I get tired. And my leg fell asleep yesterday. Does this mean I have ALS?” people. “NO SRSFACE GUISE I AM NOT AS STRONG AS I USED TO BE I THINK I GOT LOU GEHRIGSES.” You’re seventy. Yes. You’re probably weaker than you used to be. IT IS CALLED AGING. It, too, is terminal, but it doesn’t have its own nonprofit. But I’m pretty sure there are support groups. They CALL it bingo night, but let’s be honest, that’s not what it’s for.
I’ll probably go and check one out, though. I’ll be brave. And hopefully I won’t have to deal with my OTHER fear, which is me sauntering in there with my leg braces and the others being all “PFFT, BRACES-GIRL, COME BACK WHEN YOU’RE DEALING WITH THE REAL SHIT.” even though I KNOW that’s completely irrational. There’s no DME exchange rate on entrance into the ALS Club. You must be THIS bogged down in medical equipment to go on this ride.
Support is important, though. As is advice, from people who have fought on the front lines, so to speak. The woman who wrote me that email suggested that I get a signature stamp made sooner than later – and I don’t know that it occurred to me yet, that I’m going to need such a thing. I bet there’s all kinds of amazing tricks to this shit, resources I don’t know about yet, that other people can give me. And maybe, when my bouncy happy freaklet self waltzes in there, maybe I can give them a breath of fresh air by NOT being one of the Forum People.
Because my second circle has strict orders to put me down, if that happens. Occasional lapses into self pity are fine, but if I become all about “WHY ME” all the time and “I HAVE IT WORST OUT OF EVERYONE ALIVE” then ….Old Yeller style, out back behind the barn. Ka-blam. I will NOT become that person. There’s enough of those assholes already, and they’re all on the forums.
I just got this delightful spammy comment!
Don’t skip courses ith attendance policies hich are not necssary.
My treatments started immediately with phlebotomies on a weekly basis
for about 6 months then became bi-weekly for a few months
then monthly for awhile. If you are studying for your national certification examination,
there are many resources readily available that are designed to much
better get ready you for the substance on the examination.
Phlebotomies on a weekly basis sounds rough! Though, for awhile it felt like I was doing that. I was a reverse vampire! An amazing amount of people have taken blood from me. I think they’re storing it for future armies of Vashti clones; we will fight them with sarcasm and stickers! BEHOLD MY LOVE OF CATS, IT IS OVERWHELMING AND POWERFUL. PEW PEW PEW!! NOW FALL DOWN. No, over there. Further. I’ll bring you guys cookies later. Stay down. Chocolate chip? no? Macaroons! Good choice, Future Enemies. They are a favorite of mine, too.
Uh…what was my point. I don’t think I actually had one. The spammer’s username linked to a hair loss clinic in the UK. I’ve actually got very little natural hair on my head, it’s mostly extensions; they might be on to something. I..should probably post about that some time. I’ve had it in the back of my head to vlog eventually, and I thought that’d be the first topic, vanity. But I’m far too self-conscious to record myself while there are other people in the house. How vain of me, right? (BWHA-HA! See, how I am the master of the callback. COMEDY.) But there are several things on my mind regarding that topic, and I should probably get them out here.
Maybe after I’m done playing whack-a-mole with the spammy comments. They seem to be active today!
I’ve had to nix a couple of spam comments today. I guess that means I’ve made it? Total strangers found my site and thought it worth trying to sell their shit through my comments!
Thank God for the moderate comments function, though, yeah?
The pamphlets and the wiki articles and the doctor advice all say that ALS is exhausting. Your muscles are working harder than normal just to keep you upright. Your body is burning massive amounts of energy just to BE. And then when you ask your body to actually do something? It’s like you’ve run a marathon.
Literally.
It’s just under one mile to the bus stop from my house. It’s not a hard walk, it’s all curvy residential streets, there’s no sidewalk for a little of it, but it’s not that difficult. Google Maps says it takes about 18 minutes. It takes me about 25 to 30. Yesterday morning, I headed out to run a couple of errands, so I walked to the bus stop to head out. It was 58 degrees and overcast; I was dripping sweat by the time I got there. Everything is so much harder than it used to be, in the stupidest of ways.
That bullshit thing with the spoon theory and the budgeting of your energy? It’s not really bullshit, turns out. …Not that I thought that it was to begin with; I’ve had chronic headaches my whole freakin’ life and I knew how draining it is, to be in pain all the time, how it steals your energy and makes it hard to just be alive. The budgeting, though. Man. I knew nothing about the budgeting. I thought I did, but HOLY FUCKBALLS I had no clue. I HAVE SEEN THE LIGHT. AND IT HAS SPREADSHEETS AND SCHEDULES.
My errands yesterday were *supposed* to be simple. Take the bus up the road to the post office to mail something, then head back home and stop at the store on the way to pick up my new, smaller prednisone scrip. Only…the post office didn’t have an actual COUNTER open, like they used to, it was just a machine that prints shipping labels, and it didn’t do international. I had to take a different bus to the main post office to mail it instead, which was about an hour away after waiting and bus ride and walking. After accomplishing that, I should have come home, but I was on a mission for little shelves for my apothecary bottles, anyway, so I walked about a half mile to the mall, and wandered a home goods store, but they didn’t have anything shelf related but DID have socks with lobsters on them. So I bought those. I got some lunch, then went to the beauty supply store nearby cause I’m out of top coat, then to another store in that same parking lot that might have shelves but didn’t, and then to the bus towards home. I hit up the store on the way home, got my scrip, and then wandered around a little while looking for various things (shelves, cute socks), bought some cleaning supplies, and walked the mile home. My backpack was full; not really heavy heavy, but it had some heft to it.
It was 64 degrees, 4 PM, and I was panting like I’d run home.
Out. of. goddamned. spoons.
And that budgeting thing is for REAL REAL because at the end of the night last night, I had to stop every other step when I brought up a laundry basket. I was just done. Stick a fork in me. This morning, I found myself pulling myself up by the rails going upstairs, because there wasn’t strength enough in my feet to get me there by themselves. I am bringing laundry upstairs by setting the basket on the stairs, walking up to it, set the basket up two more stairs, lather, rinse, repeat.
That will teach me, right? I mean, I KNEW it was stupid to do so much, but my stupid brain was all “Hey, we used to do this all the TIME, man! Just..take the bus out, walk around, maybe buy some stuff, maybe not, but just have a day wandering around. Good times, man.” and my body was all “Dude we’re not in college anymore, go home and sober up, Brain. And stop peeing in my bushes. I WILL call the cops, asshole.” “Douche. You used to be cool.” “Yeah that was back before you made us walk all the fuck around the city to prove to yourself that we still could. Turns out we CAN’T, asshole. Now seriously, I wasn’t kidding about the cops.”
It’s taken some getting used to. I’m having to relearn some behaviors, but they’re not all bad. Asking for help comes easier, which was a hard lesson. I’m a fiercely independent person; I can’t stand bothering other people for things I should be able to do myself. For the whole first YEAR of my ten-year relationship with the boy, I STILL asked for rides to places, to the point where he told me, “I will DRIVE you to the store, woman. Just tell me you need to go get groceries and we’ll go. You don’t have to ASK every time.” But I did. Now, though, there is no more demurring when there’s an empty seat on the bus. Before, my social awkwardness would make me just stand there the whole ride, even though all I had to do was ask someone to move a little so I could sit. Any more, ‘Excuse me, may I sit?’ is easily out of my face if I don’t just brush them aside gently and plop myself down.
I’ve learned to stop denying myself an easier time because I didn’t want to ask for it.
I’ve had to swallow my own advice to friends in need – there’s no shame in asking for help. There are people around who love me, people who want to help me. A ride to the fucking store may be the only way they can help, but IT MEANS THEY CAN HELP. And I should let them. There will be time for independence, time when I can’t do things for myself, but I don’t need to refuse a hand now to prove to myself that I don’t NEED help. I can ask for it anyway. Even if I can still do it myself. It’s breaking me in, for a time when I can’t. When asking for help will be mandatory and not a luxury, when my pride writes checks my strength can’t cash.
Besides, sweating is gross, and if I don’t have to, then why the hell should I?
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.
I had my followup with Dr. Goslin about the prednisone and whatnot. More shocks and stabs, more with the scrapey tool against the arch of my foot, more of the “hold your arms out” pushy/pully tests. She concluded that there’s no difference between this session and the last. So that either means the prednisone is keeping me stable, or my progression is just so slow that there wouldn’t have been a difference anyway. She’s taking me off the prednisone now, and we’ll check back in a couple months to see which is the case. If the prednisone was helping, then we’ll have to talk about alternative treatments, maybe IVIG.
You can’t, of course, just stop taking a steroid. It’s a recipe for bad times. So we are tapering me off; down 30 mg from the 40 I was taking, for 4 days, and then down 5mg every four days after that until I’m done. I’m happy to be done with it. I’m grateful that the bitchy side effect never happened; as side effects go, weight gain is not that terrible. It still SUCKS, do not get me wrong, but at least I wasn’t screaming at my loved ones while I bloated up like a whale.
Dr. Goslin is still a little stumped by me. I’m just…odd…enough that she’s not comfortable putting the ALS stamp on my forehead with assurance. She’s like, 99.9999999999999999999999999% sure that’s what’s going on, but how did she put it, something to the effect of, my symptoms are exceptional outliers. So basically, “I’m really pretty sure that this is ALS, but juuuuuuuuust in case some years down the road it turns out to be something different, remember she wasn’t completely certain.” She asked that I be open to further experimental treatments as ideas occur to her.
Let’s see. The only other thing going on with all of this is that I have a cough – which may just be a cough; sometimes? You just get a cough. It’s been about a month now, though. Eeeeeeverybody in my office got some kind of plague, but I don’t think it’s that, as I FEEL okay, it’s just that I cough and clear my throat a lot. My nephew was sick about a month ago and had a cough with it, but it also had a fever, which I never had. And my coworkers and nephew are all better now. For an unrelated reason, I was checking on the various side effects that my Fistful O Meds have, trying to track down the actual culprit for the heartburn I have a lot even though I’m taking ranitidine now. I found out that one of the possible side effects of riluzole is…coughing.
I’ve been on riluzole…about a month.
I really hope they’re not related. It would be a REALLY SHITTY CHOICE, do I live for a little longer? And have a cough for my entire life? Or no cough, but dead sooner. Or potentially take ANOTHER med to counter that.
Blehhhhhhhhhhhhhhhhh.
I love this. So so so much. Watch the whole talk, and be awed.
“No amount of smiling at a flight of stairs is going to turn it into a ramp.”
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.
Rooouuuuuuuuuundabout four, five years ago, I hit what you might call “a rough spot”. End of my marriage, purchase of a house, the move, mom had a health crisis, things like that. A rough spot. And I grew up incredibly poor, so food has always been a comforting thing. Thus, I have always been…a little rounder than necessary, usually right around 160 when the charts all say I should be 140, but fuck those BMI charts anyway, I like a little curvy. But this little “rough spot” pushed me to be far heavier than I’ve ever been. I freaked out when the scales tipped past 200, did the paleo diet thing, and lost 40 pounds.
I weighed pretty close to my target weight, I had a shiny new house that needed some decorating, I looked cute, my job was going great!
And then this whole thing kicked in for real. Annnnnnd I began stress eating. And so I gained back ten pounds.
And then my little brother and his family moved in with me while they wait for their new home to become ready, and they have a little kid, and they eat a lot of processed food. I am surrounded by unhealthy food and people giving me permission and non-judgment to eat it. And it tastes good and is easy, which is why I got fat in the first place. So I eat fast food while we are out, I eat processed food smothered in ranch while I’m home, and drink sugared soda again instead of diet. And so I gained another ten pounds.
And theeeeeeennnnnnnnnnnnnnnnnnnnnnnnnnnnn prednisone.
Fucking prednisone.
With the water weight gain and the wanting to eat ALL. THE. TIME. And there’s nothing around me but junk food. And so I gained another twenty pounds.
So now I’m just about back to the weight I was when I lost my shit in the first place and started hardcore dieting. I had to buy new clothes because I’d either thrown away or turned my fat pants into painting pants. I feel gross, I feel unattractive, I feel like a loser. …As I shove another handful of candy in my mouth because holy SHIT does the prednisone make me want to eat, like, ALL THE TIME. And my life is incredibly stressful right now, so I console and reward myself with delicious food. And so I gain weight.
FUCK IT – YOU ARE DYING! EAT ALL THE CREAM PUFFS. ALL OF THEM. ALL THAT EVER WERE. WHAT’S IT GONNA DO, KILL YOU? HEY IS THAT SALTED CARAMEL SAUCE? I BET IT WOULD BE AMAZING TO DIP THOSE CREAM PUFFS IN. YOU’RE DYING – LIVE A LITTLE. YOU CAN’T PUSH CREAM PUFFS DOWN A FEEDING TUBE, BITCHES. ENJOY THIS WHILE YOU CAN.
I tell myself I’ll get back on the paleo diet just as soon as my little bro and his family are out – I’ll be cooking for myself only, and I can buy non-processed shit. I won’t have someone else to cook for me, and I won’t be going out to fast food every other night anymore. I will Eat Right and Lose Weight. And I won’t be on the prednisone for much longer, so that will help a lot, too.
Except eeeeeeeverything I’ve been reading about ALS has said in big bold print that if you have ALS, YOU SHOULD ABSOLUTELY NOT DIET TO LOSE WEIGHT. Because…well….you’re not going to be able to eat, eventually, and you’re going to NEED that extra weight to live off of. And statistically, my doctor tells me, people with extra weight tend to have better prognoses.
It’s every fat girl’s dream! Not only PERMISSION, but RECOMMENDATION to stay fat!
HEY CAN I GET A SIDE OF RANCH WITH THESE FRIES?
…But I don’t WANT to be fat. Yes, food is delicious, but I really liked being able to fit into 32s. I felt healthier, I looked cute. I want to be there again. I want to be rid of this emerging double chin. I want to fit into medium girls’ shirts – I’d say small, but I’ve always been too busty for that nonsense, and I am OKAY WITH THAT – because I have some really awesome ones. My Night Vale shirts are all mediums and I miss them. I want to not sweat so goddamned much. I want to not have my shirt flip up in the back when I sit down. I want to be not so self conscious about it when it does.
I don’t want to be fat.
I have the power to not be fat. I have the self control. I have proven this. In 5 months, I lost 40 pounds. I can do it again. I just don’t know if I SHOULD. I mean, yes, eventually I will not be able to eat at all. Probably. It doesn’t always happen. I don’t think this necessarily gives me permission to eat whatever I want though. And I don’t know that hauling around this extra weight is any healthier, in the long run. It’s such a slow progression, and I can’t be fat for years and years “just in case” I start to become unable to eat.
So do I trade healthier and happier NOW for just healthier later?
I will ponder this some more, while I eat my Taco Bell lunch.
Mmmmm Baja Blast.
When taking prednisone, make sure you have PLENTY of liquid to wash it down. Because if that pill touches your tongue, you will taste it FOR THE REST OF YOUR LIFE.
What does this blog have that the other ALS blogs don’t?
Swears. Lots and lots of swears.
((Grawlix is the word for symbols used in place of swearing, like when a character says “@@#(*&$@%^!!!”))
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. 
And then once I get to work, I have Second Breakfast! 
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.
I have to redo a couple of the labels, I printed a couple of them too large for the bottle the medicine was in. But overall I got it right! My favorite label I made was for the vitamin D pills. “Tabletized Sunshine”. Heh.
The top shelf is either decorative bottles or perfume. Because fuck yeah, lovely smells. Kristy, you were EXACTLY right; Cost Plus had precisely what I had in mind. Thank you! It’s going to be AWESOME when all of the bottles are labeled and the cabinet painted/stained.
I’ma geek out for a minute about voice banking. Ready? Here we go.
Voice banking is one of the most amazing things to happen for people with ALS, or any kind of degenerative disease that robs someone of their voice. Model Talker allows you to record your own voice, from which they’ll make a synthetic version for use with a text-to-speech program. It effectively lets you “talk” with your own voice, after the disease takes away your ability to speak.
It’s amazing and important and I’m SO GRATEFUL that it exists and that I’m allowed to participate in it. It’s currently in beta, and anyone can apply to be a part of it. ModelTalker is a program you install on your computer, and then you record yourself saying prompted phrases by speaking into a USB microphone headset. It’s best to bank before the disease hits your voice, so that your computer generated voice is as true to your natural voice as possible; so the sooner people with ALS know about it, the sooner they can start banking. It’s a fairly sizable time commitment – I understand there’s about 1600 phrases to record before they have enough sounds to create your voice from. The sentences I’ve seen so far include lines from The Wizard of Oz, and the phrase “There’s more than one way to remove a tooth.” I’ve only just started; I recorded the calibrations and the first ten sentences last night. They’ll listen to the samples, and suggest changes, and then I’ll record the next set. I will be sitting at my desk and recording goofy sentences for hoooouuuuuuuuurs.
But it will be TOTALLY WORTH IT, when my computer generated version of me calls someone a fuckwit for the first time.
This technology is SO IMPORTANT. It’s completely dehumanizing, being unable to properly communicate with others, and that idea frankly scares me. The fact that speech synthesis exists at all is fantastic, don’t get me wrong, but we need to take it a step further. Just look at Dr. Hawking, his voice..it’s become a joke, how robotic his communication is. To have to rely on a robotic voice to tell someone you love them? To try to explain to your loved one why you’re crying with this…fake, cold, not-really-a-voice? That is the worst thing, and I can’t even imagine the stress that adds to an already horrible situation. ModelTalker gives you back some semblance of who you were, to continue to be who you are. It gives you back a little bit of what this stupid fucking disease takes away from you.
I was contacted some weeks ago by my local chapter of the ALS Association wondering if I would like to be part of a local news story about voice banking.
I said yes, please.
They’re going to come to my house next Thursday and film me doing some recording, and then interview me about it. I’m really happy to have the opportunity to evangelize about this technology, to let people know it exists, and it’s out there for free. Technology is solace for people with ALS. It helps us travel when we can no longer walk. It helps us communicate when we’ve lost the ability to speak.
It helps us continue to be human, for just a little bit longer.