Clinic Day 3/8/21

Clinic Day again, darlings. It’s virtual today, so I’m able to liveblog it. Hehehe. I apologize for not being very faithful with these updates lately. The changes I see are very slow and gradual, but I realize if I haven’t given updates for awhile, progression can seem very abrupt to YOU. So.

Spoiler alert: Not much has changed! I’ve had this 3-5 year life expectancy disease for almost 7 years now and I’m still able to walk a little. Things are, blissfully, going slooooooooooowwww.

First appointment: Nursing! I really like my nurse. We did the ALS-FRS test, which we did a week and a half ago, so SURPRISE! no changes. I didn’t have any new demands or needs, so we mostly talked about how miserable traveling in a power chair is.

Second: Pulmonary! I got my usual headpat for being good about using my AVAPS, which as usual feels a little undeserved now that I NEED it, otherwise I have nightmares about suffocating and keep waking up ’cause I’m not breathing well. He still doesn’t think I need a feeding tube yet; normally he suggests them once breathing gets below 50%, and last we checked I was 46%. My progression, though, is so slow he’s not worried about it just yet. We’ll check my breathing soon, it’s a whole ordeal and a separate appointment to get that done now, thanks to Covid. Fucking Covid. We also spoke briefly about an ALS Association event I spoke at, since he was there. I got a headpat for that, too. Yay.

Third: OT/PT! We didn’t have much to discuss because again: slow progression. I had some questions about Hoyer lift logistics, about eventually needing to get transferred to the toilet – do they have slings that uh..accommodate that? They do. My only experience with the lift (transferring to the exam table during research appointments) involved a very coccoon-like sling and I didn’t know how TF I’d transfer in that to a toilet or commode. Answer: I won’t! There’s a much easier kind of sling. I don’t need it yet or soon, but it’s the kind of thing I wonder about as transfers get a liiiiiittle bit harder month to month. So I ask now. Otherwise, the appointment went very quickly. I was reminded that hey, dummy, wrist braces exist, in fact I own a pair, and I really very should USE THEM when holding eating utensils especially. They make things Much More Stable.

Fourth: Palliative Care! This is an appointment I don’t technically need yet, not at all, but I haven’t talked to him since 2017 so I figured a check in chat wouldn’t hurt. When last we spoke, we set up my POLST (Physicians Orders for Life Sustaining Treatment – a document that tells medical professionals how far to go in order to save my life (spoiler alert – not very), kind of an Advance Directive but with a lot more weight to it)). I found out that they do NOT have a record of my Advance Directive on file, so it’s very good we spoke today. I’ll get that right over to them. The nurse is a very pleasant man to talk to, so it was lovely to chat.

Fifth: Dietician! It wasn’t the usual lovely person, so we didn’t get to chat and I was DENIED my chance for new kitten photos. Boooo. Her stand-in was a very nice woman but we only had official stuff to talk about, so it was short. Just: Keep doing what you’re doing, call us if something comes up.

It’s a recurring theme on Clinic Day. Which is a very good thing.

Sixth: Speech therapy! It WAS the usual lovely person, and I hadn’t seen her in a YEAR, so it was good to check in with her. It was another whirlwind appointment, just: make these funny faces, eat something so I can see you swallow, drink something so I can see you swallow, everything good? OK see you in 3 months.

Seventh: Social Worker! A fifteen minute chat to see if the ALS Association can do anything for me at the moment. I thanked them for the loaner power chair, which they’ve collected. Seriously. The loan of that chair saved SO much grief and damage to my own. I’m so grateful and they are worth every dime I’ve raised on their behalf. Speeeeeeaaaaaking of whiiiiiich….


So, the Walk to Defeat ALS is happening in May this year, and it’s a virtual walk again. If ya happen to have a coupla spare bucks, maybe donate to my walk?



Eighth: Neurologist! I like my new doctor. Dr. Goslin retired rather suddenly (to us; she’d been planning it for awhile apparently) late last year. I miss her like whoa, but the new one seems to know her shit and I trust her. I don’t envy her position, though, of having to fill a particularly beloved pair of shoes. There was nothing new to report on the ALS front, but there IS another drug we could try to get rid of the daily headaches, so we’re gonna give that a shot.

And with that, we’re done! 3 hours of visits in one go, rather than eight separate appointments. I LOVE THE CLINIC DAY MODEL. IT’S SO GOOD.

And now…I am gonna take a freakin’ nap.


COVID Operations

So. 2020, huh?


I came into the new year at a handicap – no pun intended. The holidays weren’t particularly kind, it feels a bit like I didn’t get a proper Christmas and with my Christmases so limited I really felt robbed. The new year was particularly rough. It was a prime chance to feel incredibly sorry for myself. Everyone was reflecting on the last decade, which forced me to do so as well, primarily reflecting on how much the last 10 years took from me. I lost my romantic partner. I lost my best friend. I lost my house. I lost my health. And then everyone started talking about the new decade, and all of the marvelous opportunities it was going to present, and I’m just sitting here thinking I don’t GET another 10 years. It is supremely unfair.

So yeah, not a great start. And then the world just conspired to keep everything as shitty as possible. The idiot in charge nearly started World War III with his playground bully behavior. Australia caught fire. And now this pandemic. Everything’s going wrong. It’s very easy to feel helpless and hopeless.

At the risk of sounding like a motivational poster though? I’m in a uniquely privileged position right now. Terminal diagnosis aside, I have a LOT to be grateful for. I’m very worried about COVID of course, but not in any immediate way. I know damn well with my already hindered breathing, catching it would basically be a death sentence. But I’m smart. I’m careful. Those people I physically interact with are also careful. I worry about it in a vague way, but all of the day-to-day concrete problems that are affecting most people aren’t touching me right now and I am incredibly grateful.

I don’t have to worry about losing my job, because I’m already medically retired. I don’t have to worry about keeping my job or finding a new one when this is all over. I don’t have a job to force me to interact with the public on the daily.

I don’t havr to worry about making my rent, because I’m on a fixed guaranteed income. Until they take away Social Security and disability benefits, I am secure financially. These stimulus checks everyone’s talking about would be nice if they happen? But I don’t NEED it in a strict sense. I have savings. Granted, they are earmarked to buy a house, but if things went seriously pear-shaped I can float us for six months. This pandemic has not been a financial hardship for me.

I don’t have to worry about cabin fever, because I’m an introvert by nature. I’ve always been self entertaining. Being pretty much bedbound for the last year or so has honed my skills to a sharp point. I have a lot of things to entertain myself with. Though of course now that I’m told I can’t socialize, I’ve been wanting to. I’m not an introvert or an extrovert apparently, I’m a jerkivert. I’m more like a cat than I thought; I do crave interaction but only on my own terms. And if you tell me I must remain away that’s when I want to be around. Meow.

I don’t have to worry about supplies, because I’m naturally the sort of person who buys groceries for 12 people even though there’s only two of us. Right before all this went down, I had bought a case of toilet paper and paper towels. There is food literally overflowing my pantry, I have a freezer outside in my storage unit chock-full of food. We are well stocked for a couple of months of absolute isolation if we had to be.

I don’t have to worry about emergency supplies either, because I have so many incredible people in my life who have made a point of asking me if I need anything. I’m already well acquainted with mail order, so that’s also been a blessing, but if I needed anything in emergency I can think of six people off the top of my head who would go get it for me. I am safe and secure and well positioned for whatever needs arise.

I don’t have to worry about a support network, because I already have the best one. We keep each other safe and protected and loved and secure. We do kind things for one another whenever we can, and I quite literally do not know how I would survive any of this without them. This includes you also, dear reader. I’m reminded time and time again that the kindness of strangers is a very real thing. You keep my faith in humanity alive. You give my optimism a serious reason to exist. There’s definitely precedent.

And so until – or IF it even happens – until myself or my loved ones contract the virus, this whole pandemic thing hasn’t fazed me, really. I’m in a good position to deal with this. I’m actually in a pretty good position to support others who are going through it, and that’s a massive blessing. Or stroke of luck. Or happy circumstance. However you want to view it. Things aren’t that bleak right now. It could have been so much worse for me. I’ve said it before, I will say it again, probably 100 or more times on this blog even – I am a very lucky woman.

I’m so fortunate to have what I have.

So how are you folks holding up? Anything I can do to help you?

Merry Christmas and all that

Sorry again for radio silence. It’s not like things haven’t been happening in VashtiLand, it’s just nothing really to do with ALS so much. It’s been normal. The new normal, not normal. Notmal. Born of a typo, I am adopting that word forever.

Last week I went to California to visit my mom for Christmas (surprise, mom!) and reconnected with an old friend, and got some awesome presents and made a fruitcake. That’s the TL:DR version.

First off, I want it clearly on the record that my little brother is out of his mind. Those that know him will not meet that statement with surprise. Nor is it the first time I’ve ever said those words, in that order. We drove down to Cali in a rental car, because it is much easier and cheaper to haul five people in a car than on a plane, especially when one of them is an infant and one of them is five. My little brother drives a tow truck on the night shift, he loves to drive – seriously loves it – and loves to drive at night, sepecially; he adores the quiet when there’s no one on the road. That’s not why he’s crazy. No. He is crazy because he did a full shift of towing, got off work at midnight, and then decided that NOW IS THE TIME THAT WE DRIVE TEN HOURS TO CALIFORNIA.

Out of his tiny little brain.

So despite concerns about driving tired and insisting that he was fine and promising on the souls of his children that he would pull over if he got tired, we piled into the car (literally; my poor sister in law was coccooned in the back seat with a toddler in his car seat, a baby in her baby seat, and blankets and pillows) and started the drive. We got fast food for the road, talked a little, and he drove, until we needed to pee or feed the baby or change the baby. With him complaining the whole time about this is why he likes to drive at night, you don’t have to stop for pee breaks when everyone’s just sleeping. It’s weird for me to sleep in the car – for ten years I was with a dude who needed a copilot to keep him awake when he drove long distances, like a NORMAL person, so road trips have always equaled THERE WILL BE NO SLEEPING. On this trip I was expected, encouraged to, and that was weird. It was nice though, I will always prefer traveling by car because it’s just SO MUCH LESS HASSLE. No security checks and long lines and fussing about where is the disabled entrance, just the occasionally dodgy public bathroom. And little brother annoyed that we have to stop, AGAIN, because it didn’t occur to his wife to breastfeed when we stopped for potty breaks.


We got to the hotel around noon, napped, got some In N’ Out for dinner, went out to see some friends, looked at lights, came back to the hotel, and settled down for a proper sleep. Which of course meant things had to go wrong. And by wrong, I mean someone hitting a transformer at 3:30AM and knocking out the power grid which triggers the hotel’s fire alarm. And by wrong, I mean the hotel’s emergency lights also do not work for some reason. None of which I knew, of course, just OH MY GOD EMERGENCY NO LIGHTS GET OUT GET OUT GET OUT!!! Cue me, woken out of a dead sleep in a strange hotel room with no clothes on, in complete darkness except for a flashing strobe light and an alarm so loud it is literally impossible to think. They put me in an accessible room (yay awesome hotel manager!), close to the exit, but first I had to get some clothes on, which meant stumbling around in complete darkness punctuated by blinding flashes with the most piercing, annoying screaming in my ears the whole time. I wound up outside barefoot in 34 degrees, in jeans and a backwards tank top, sweatshirt and boots in hand, hobbling through gravel to find a place to sit and put my boots and braces on by a blissfully near-full moon. I found the rest of my family, in the car keeping warm, and we sat in the parking lot, watching the pattern of flashing lights in the three story hotel (which were kinda cool looking from a safe, sane distance), my five year old nephew freaking out because he’s scared as hell and hates loud noises, my brother telling me how he went to check for me and didn’t know if I was still in the room and had fallen down or something so he was relieved that I was okay, and he is MUCH cleverer than I am, because he flipped the safety lock on his door so it didn’t shut all the way. Which meant that, unlike me, he could get back in to his room when the power came back because I’d left my wallet and phone and everything in the world in my room except pants, shirt, sweatshirt, boots, and cane. The fire department came and checked everything out, the power came back on while they were inside, we were all let inside when the firemen gave the all-clear, I had the poor night manager (freaking out because everyone was freaking out at HIM like it was his fault personally that this happened, on the phone with the alarm company because why didn’t the emergency lights come on seriously what the hell) let me back in to my room at around 4:15 or so, and got back to sleep at about 4:30.

Which is when the alarm went off again.

Just once, probably because the manager had finally gotten hold of the alarm people and they reset the system. But still. The punch line to all of this is that I’m doing a sleep study program at the moment, and it records audio while I sleep to see if I talk in my sleep, or what kinds of interruptions happen to disturb me (looking at YOU, Parmesan), so I have a recording of myself when the alarm went off. Turns out, when startled out of a dead sleep by a panic inducing noise and light show, I make a startled little “Oh!” sound like a cartoon.

And with that, it was Christmas Eve!

When I woke up after all that, I messaged my Squirrel Buddy Jim. You know, that buddy you have that you can just get together and squirrel around with. Mine is named Jim. I confess I was nervous about the meeting – I hadn’t seen him in person in too many years and I was/am completely self conscious about what the disease has done to me, how that affects people that haven’t seen me in awhile. Hi, last time you saw me I was 50 pounds lighter and didn’t need a cane and could step up on a curb just fine, how you doin? I guess I’m allergic to people feeling sorry for me? More like, it hurts me a lot when my condition hurts someone else. I get sad when I have to tell someone about it, because they get sad. And Jim has been a happy distraction in my life for almost 25 years and the last thing I want is to make him sad because I love him a lot. And he was not disturbed at all, outwardly, and was the perfect mix of casual ‘let me help you with this’ and ‘this is totally normal no big deal’ about it all, and I could cry, I’m so grateful. I should have expected as such from him, but I was still nervous, and I’m so happy I had no reason to be. We hung out like old times, we showed each other awesome things, I met his kids again, since they were wee and just born the last time I saw them, and we ate cookies he’d decorated and ate miracle fruit and tasted sour things and had a marvelous time as always. We talked from our hearts on the 45 minute drive back to my hotel (he lives in the middle of nowhere), and reconnected as always, and everything was normal and good.

And then Christmas was with my family so that was all just weird. Because family. I’m glad the aunts and uncle and cousins drove up to meet with us at my mom’s house, because I don’t know when I’ll get down there again. Traveling in general is getting harder, and soon I won’t be able to travel at all without special accommodations, which will make me less likely to travel at all. I told them all it’s their turn, now, to visit me.

And then we got up and out of the hotel on Saturday and my crazy brother drove us all home. And it was good to be home, and sleep all day Sunday except when blowing up Raiders in Fallout 4 or dodging Parmesan’s icicle feet because oh my GOD he would not leave me alone all day. And it snowed, just a little, and I slept through it, but that’s okay. It was a good Christmas.

I hope yours was grand.