Sorry about that.
I love you.
Thank you.
Vashti L. Ross died the morning of July 11, 2023 due to complications from ALS.
To learn more about her journey with this insidious disease, please keep reading, or see https://alsoregon.org/vashti-ross/.
If you would like to help with her final expenses, please visit https://www.gofundme.com/pruzh-dying-is-expensive.
In the early days of my disease, when encountering difficult things, or when someone would give me sympathy, I would say, “oh it hasn’t BEGUN to get hard.” For years. It wasn’t to be a doomsday preacher or anything, just acknowledgement of a fact. It was going to be harder someday, so I should both appreciate the good stuff while I had it and be prepared for when they did.
Things are officially Hard.
Several phrases describe me now that both hurt to hear and seem so surreal. “Late-stage ALS.” “Effectively paralyzed from the neck down.” Statement of fact. I don’t think that I get to have another birthday. True things. I am, technically, on a ventilator – while I CAN breathe without the AVAP, I choose to use it because it SO. MUCH. EASIER. But it all leads to I am capital D Dying.
Only.
Only I don’t FEEL like I’m Dying. Or even dying. I expected to be in a constant state of misery, when it got this far. I’m not. My body doesn’t work but nothing hurts. I feel FINE, it’s literally just that I can’t BREATHE. There is no deathbed, it’s just my tempurpedic.
My disease doesn’t feel awful, it just manifests as a thousand inconveniences. I would have posted months ago, but I was waiting to get my speech-to-text software running. Now that it’s installed and troubleshot and running, I find that it won’t work for me because my voice is too soft and the AVAP bakes be sound like I hab a code. It’s not the end of the world, it just means I must use the onscreen keyboard and type things out. Inconvenient. I can control my laptop using my eyes, but I can’t install anything because Windows’ little “are you SURE you want to allow this software to make changes “ prompt disables the eye gaze software so I can’t click Allow. Frustrating. But not a crisis.
Some day sooner than I would like, the ventilator won’t be strong enough. I’ll take the self checkout, because like HELL am I getting a ventilator surgically installed (you can fuck off with that ok thx bye. It is a viable option for a lot of people, but I absolutely do not want it). But that day will come, because I don’t fancy suffocating. And on that day, chances are I’ll feel fine except for breathing.
When I die, I’ll say goodbye, I promise. Until that day, expect more fuckery.
Hello, my name is Vashti, and welcome to this old body. Bob Villa couldn’t make it today.
I figured it’s time for a check-in. Even local friends don’t know exactly how far my symptoms have progressed, what I can and can’t do, so let me show you around. We’ll do this from the bottom up.
Feet – useless. I can’t move them all. I still have full and complete sensation in them, they just don’t move when I asked them to.
Legs – some movements, no walking. I can shift my legs around a little bit, raise my knees just a little bit, and that’s it. Boom. I made you a poem. My knees have become stiff with lack of use, so it was getting to be excruciating what I had to bend my legs to be in the sling or whatever. I now sit with a blanket curled up behind my knees to prevent this.
Bathing suit area – OMG potty talk ahead LOL LOL LOL – I pee exclusively through a suprapubic catheter. It is a surgical tube installed straight into my bladder about halfway between my groin and enable. It is a single best surgical decision I have ever made. I get UTIs a lot, which sucks very much considering one of them wound me up in the hospital earlier this year. Pooping is hard, because the muscles I used to bear down are starting to wither away. So it’s a weird kind of constipation. I’m not sure what we’re going to do about that when it gets worse, laxatives are not really an option because I’m not going to be able to make it to the toilet quickly when they kick in. So that’s fun.
Guts – I have a feeding tube installed, but we haven’t started using it yet. We flush it daily with water to keep it open and clear. I can still eat food so it remains installed but auxiliary.
Arms – mostly useless. I cannot raise my hands to my face. I need things to be in both hands if I am to use them, if something is out of immediate reach, it is off in space for all it matters to me. I have had to surrender control of the bed for this reason. I need someone else to raise and lower the head. I need someone else to dress me these days, I can’t really participate in anymore. I am an unwieldy doll.
Hands – mostly useless. My range of motion is extremely limited. Mostly it’s just my thumbs can move a little bit. My cell phone is in my hands, I can swipe up and down but I can’t reach the other side of the screen. Using a cell phone is very hard these days. This entry is being brought to you by eye gaze technology and speech to text software! Hooray for technology!
Lungs – getting pretty bad. My lung capacity is now around 23%, actually probably lower than that because I haven’t had it tested in a few months. Breathing is officially getting hard. For the most part I still only use the AVAP when I’m sleeping. There are days though, there were three of them so far, which went where my breathing was so shitty that I wore it all day. This will be what kills me. There is no way in hell I am having a ventilator, so when my breathing gets too bad then that will be it. Hopefully they can make me comfortable.
Speech and swallowing – I can still do both of these things. My speech is unaffected except by my breathing, which makes my voice high and reed sometimes. I’m beginning to have problems swallowing. It might take me a gulp or two to get something down. Don’t have problems with things going down the wrong pipe very often, which is great because I can’t draw and breath strong enough to get it out when it happens. I wind up having to make these horrible horrible noises trying to draw in breath. It’s pretty damn scary for everyone involved. I’m afraid that’s how I will go out – choking on something. I’m very careful and diligent when drinking and eating so I think I’ll be okay.
Brain – the brain meats are doing their job but often with protests. I get a lot of panic attacks these days, mostly related to my breathing. I find myself a little out of breath, which triggers panic, which makes me unable to breathe, which makes me panic about not being able to breathe, and it’s just a vicious cycle. Praise God for Ativan is all I’m saying. I’m mostly coping. Things are getting more real, I’m definitely in planning stages for what will happen to all of my shit when I’m dead. I have a lot of stuff. I am trying to make my death as easy on people as possible. It’s a bureaucratic nightmare, so I’m doing what I can to alleviate that.
This concludes our tour. Please return your seats to their full upright position and make sure your table trays are locked and stowed. Moral of the story here, I guess, is that things aren’t exactly great but they could be so so much worse. I still have a sense of humor about it, and as long as I can find it funny, I’ll be okay. Thanks for coming along for the ride. Wait, I was doing a This Old House Parody. Okay well wear your safety goggles and check your measurements twice. Join us next week. We’ll be making mountains out of mole hills.
The most intense, personal, physical feeling is not an orgasm.
It is someone scratching an itch you had for hours.
I knew this would be a problem – it’s actually one of the few things that I did realize was going to be a problem. The itching. It’s very frustrating to have a itch that you can’t scratch, and not even being able to wiggle to get some relief is torturous. I’ve actually gotten panic attacks from itching – being so helpless with such physical intensity, knowing you can do absolutely nothing about it.
This is where other people come in. I will regularly ask Jay for scritchies, and sometimes the relief is so intense my eyes roll in the back of my head. Now that it’s winter, of course my skin is drying out, so more scratchings. He’s a saint to put up with it, and to cater to me so well. It’s an intimacy, someone else scratching an itch. And I am here for it. Hallelujah.
The main thought going through my head as I was wheeled out on a stretcher was, “I can’t die yet, J’s name is not on the house.”
It began with the UTI. It was a pretty nasty one, and I had waited a couple weeks to hit up my urologist for medication, because she had driven it into my head that antibiotics are not something I should be constantly asking for. In order to prevent my particular colony of bacteriai becoming resistant, we needed to use antibiotics sparingly. When I finally ask for help, there was a huge mix-up with the actual medication. Rite aid didn’t have it, and they didn’t bother telling me that it went several days before I found out, and they dropped the ball ordering the medication. My infusion nurse wound up calling them to figure out what the fuck was going on, and they promised be medication would be ordered the next day and a rush would be put on filling it. They lied. They lost the medication order again. In the meantime, my doctor prescribed a different medication. I never did get that first script filled.
The practical upshot of this is that I had a UTI for almost a month before I got medication in me to get rid of it.
It was late Friday night, early Saturday morning about 2:00 A.m. Jay and I had just said good night and I was preparing for bed. I became aware that I was breathing kind of shallow. My breathing got worse to where I was struggling for breath and I figured I was having a panic attack; I asked my mom for Ativan and waited for it to kick in. It didn’t kick in. I asked her to sit with me and talk with me and distract me, but my breathing didn’t get any better. In fact it got worse. I was practically panting when I asked her to get J. He came in and assessed the situation and asked me if I wanted to go to the ER. While sitting there panicking, my brain had thought about going to the ER but it just brought on more panic. But at this point I can see that there was something else going on besides panic and indicated that he should call 911.
Breathe in. Breathe out. Breathe in. Breathe out. Breathe in breathe out.
Every breath was shallow and quick, I felt like I was getting just enough oxygen to maintain consciousness and not much more. I couldn’t think. Nothing beyond, I need to get a breath in me. The paramedic showed up and took their sweet time getting oxygen on me, despite me asking for it the moment they came through the door. I think they believed I was having a panic attack. The EMT kept asking me questions, but I couldn’t answer anything because I couldn’t talk and I tried to indicate that I couldn’t talk and I tried to indicate again. Please, oxygen. They checked my 02 level and I was hovering around 84%. They finally acquiesced that hey, maybe something was going on and put oxygen on me.
It really didn’t help that much.
I don’t remember a lot about the ride in the back of the ambulance, only that I had to keep focusing on each new breath, I couldn’t lose consciousness, because then I would go unresponsive, and they wouldn’t try to revive me because I had told them not to with my POLST form. I couldn’t die because J’s name is not on that house. Once that’s settled I can die. But not before.
Breathe in. Breathe out. Breathe in. Breathe out. Remain conscious. Breathe in breathe out.
After the very bumpy ride, we arrived in the emergency room and I’m not entirely sure what medications they put in me, but whatever it was, combined with the BiPAP machine they put over my face, I began to breathe a little easier. Not great, but I felt like I wasn’t going to pass out at any given moment anymore. They cut my shirt off of me with my permission and asked even more questions. I was finally able to answer them, and supply information on my own. My O2 SATs or normally around 91, 92, but I have ALS so that’s normal for me. I have a UTI that is currently being treated, I am on day 3 of a seven day course. I experienced no symptoms at all up to this. It was a sudden shortness of breath with no lung problems before, no sickness, no pneumonia. They did a chest x-ray to verify that my lungs were clear. The rhythm of the BiPAP kept me going. Jay was there suddenly while the nurses worked around me, I took off my watch and handed it to him. I don’t think I’d ever seen him so worried or so scared. I think he calmed down once he saw that I was breathing better.
They spurned the IV the EMT had started, and stuck another one in my arm. Again I don’t know what drugs they gave me. A lot of this was happening over my head, medicine being done at me rather than with me. They said something about ” we’ll get you admitted first and then..”
Admitted. My first hospital stay. I guess if I’m going to do it, I’m going to do it properly. J had brought me my phone, to keep in contact with him as things turned up. Eventually though, they kicked him out and he went home to sleep.
I was in the hospital for a total of 4 days. During this time, we learned that this episode was probably brought on by the UTI. I didn’t quite understand the mechanism, but I knew from experience that every single time I get a UTI it leaves me weaker. Permanently. So it made sense to my brain that it was due to the UTI I was having issues. I cursed myself for not taking my problem to the doctor earlier. J cursed the doctor instead, for drilling it into my head that antibiotics weren’t something to be used right away.
I learned a few things during those 4 days. One, hospital food really is that bad. I didn’t really feel like eating in the first place while I was there, but the hospital food didn’t give me much of a reason to look forward to it either. It was on day three that I discovered I could ask for Pepsi, which was a game changer. The caffeine headache I’d had for the first couple of days finally was addressed. Two, the fact that the UTI was to blame. Three, I would be in the hospital four days to get the IV antibiotics through me. Four, it’s really really annoying to try to sleep in a hospital. Every 5 minutes it seems they wanted to do something to shove a pillow under my butt so I didn’t get bed sores, to give me another blanket that I didn’t want, to give me a wipe down bath.
They almost used chlorhexidine.
I am so grateful that I caught it. Their usual wipes to clean patients are chlorhexidine. I would have been itching all over my entire body. As it was, I was allergic to something they put under the dressing for the IV in my arm. It itched for days afterwards.
Seriously with the jostling though. They wanted to turn me this way in that, and flatten the bed every time they did so, which was a no-go for me. I found that I was able to breathe somewhat with the BiPAP going if I was laying flat. So that was okay but I couldn’t do very long.
Number five. It was literally impossible for me to poop while sitting in a bed. The hospital didn’t have a hoyer lift. They had rooms that had lifts built into the ceiling, and for some brilliant reason they hadn’t put me in one of those. So I could not be transferred to a commode. Instead, they shoved a painful rigid bowl under my ass and asked me to poop in that. I was unable to comply. I wound up having a minor accident at one point, but it didn’t get it all out and I would have to wait until I got home. I don’t have any idea what would have happened if I had gone longer in the hospital.
Number six. Having someone wait on you hand and foot is actually kind of nice, so long as the person is being compensated for their time. With my hands being what they are, I wasn’t able to take the BiPAP mask off on my own. This put me at a high risk in case something happened, I wouldn’t be able to as they put it, self-rescue. The upshot of this is that there was a nurse or someone in my room at all times. I felt bad that they had to waste their time watching me sleep, but it was kind of cool to have someone at my beck and call if I wanted anything at all. Mostly what I asked for was bed adjustments. Can I sit up a little more, can I lay back a little more? My hands couldn’t work the bed remote. Hopefully I didn’t annoy them too much. Since they were getting paid to be there though, I felt a lot better about asking them for these things.
The first day when J came to visit that afternoon, I pretty much slept through the entire visit. Didn’t want to, but I was so tired from everything. I pretty much only woke up otherwise when they asked me to, for a blood draw or to take my meds; we actually had to bring one of my meds in, they didn’t have it in the pharmacy. And it wasn’t even the ALS drug. I was on a infusion routine at the time, which meant that I was accessed and they took full use of the port, but it also meant that I needed to have doses of radicava while I was in hospital. Jay brought in all of the medicines and everything and took care of the infusions. We skipped the first day obviously. When it was time to go we actually accidentally left the meds there and had to go back up for them.
I had a lot of time to think. Mostly what I thought about was that I really really needed to get my will together. I need to contact the bank and find out what needs to happen in order to get his name on the loan. I need to make sure that all of my things go to the right people. I have my will in a document on Google drive, but I don’t have anything official. I don’t think my brother or J know how to get to it either. Surprisingly, I didn’t actually think about my own mortality that much. Just the mundane bits of business surrounding my death, nothing specifically about worrying about the afterlife or lack thereof or anything metaphysical or deep like that just.. I need to put my name on a bunch of pieces of paper. I should finally write goodbye letters. I don’t have as much time as I thought I did. This is only going to shorten things.
We had me on the BiPAP at night, but during the day they swapped me to a nose cannula. On the very last day, they tried pulling me off of the oxygen entirely but my O2 levels dipped below 90 when they did. The practical upshot of this is that I was sent home with oxygen. My world suddenly got much much smaller. Going anywhere became exponentially harder. I thought about the medical research appointments, how was I going to get a spinal tap if I’m on oxygen, carting around a wheelie tank? Again. Practical aspects to everything. Not so much of what it signified except everything was more of a pain in the ass. Things in my house where there’s already no room. now, I have to put a sign in my windows stating as such so that if a fire ever happens they know to avoid the tanks because they might go exploding. Which sucks because they live in my room where I sleep and where I would be if I needed rescuing. I’m sure they would come in anyway just with caution. But because I had these oxygen tanks, I can’t burn scented candles anymore. Poop.
The oxygen concentrator is hella loud.
I got used to it, luckily it’s rhythmic enough. It emits this high-pitched scream when it’s first turned on though that makes all of the cats run to the other end of the house. It’s one more hose attaching me to something else to go with my feeding tube and the super pubic catheter and the IV for infusion. One more ‘hey you’re sick’ reminder.
My neurologist was exasperated that they sent me home with oxygen. Apparently people with ALS don’t do well on oxygen, it makes their lungs get lazy. I had to make an appointment with my pulmonologist to follow up with all of that. Unfortunately right now I’m between pulmonologists, mine retired. I was referred to one specific one because he works with the ALS clinic, but the schedulers refused to schedule me with him because they didn’t understand why I needed to see him specifically. I had seen another provider in their office why wasn’t I going with him. I tried explaining about the clinic but they were unmoved since the previous pulmonologist also worked with clinic sometimes. This conversation took 4 days. I called to make the initial appointments, they said they would find something on his schedule and call me back, they called me back to challenge me. Fine I said, I will take an appointment with the previous doctor I don’t care. They said they would find a slot on his calendar and call me back. They didn’t. I wound up calling them again – with at least a 10-minute whole time every single time I need to contact them. They offered no apology for failing to get back to me, only said they would try to find something on his schedule right now. I was put on hold for 5 minutes while they found something. He didn’t have any openings until October they said. They could try to find something a little earlier with another provider if I wished, and I said I did prefer thank you. They found something earlier.. with the provider I had originally asked for. It was also not until October but it was slightly earlier. I asked to be put on the wait list in case someone canceled.
They did actually contact me to tell me they had an appointment the next Friday. I requested a virtual appointment and accepted. Friday when I had the appointment, I sat by myself online for 20 minutes before I call them with another 10 minute hold time to ask what was going on. They had failed to flag the appointment as virtual, so the pulmonologist had been sitting in his office waiting for me. I asked if there was something I could have done to make sure that the appointment was virtual – I had an email invite to the meeting room so the system knew I was meeting virtually, and they said no it’s not your mistake at all it just didn’t get flagged properly. Luckily the pulmonologist didn’t have another appointment that morning and was able to meet with me.
Can I just say that I’m really not impressed with the Portland clinic?
The pulmonologist however, was lovely. I really liked him. He explained a lot about ALS and how it works, and showed me my CT scan. My diaphragm is sitting really high he said which squishes my lungs plus I’m heavy so that doesn’t help. Which honestly kind of pissed me off because I was told to gain weight. I was 160 when I was diagnosed, they said to put on some pounds so I did. I guess I overdid it. Anyway, he said I don’t have to be on the oxygen during the day if I don’t feel like I need it. Just make sure that my O2 levels stay around 91 92. Use it at night though, in conjunction with the machine I use for night time breathing.
The other thing that happened post hospital is that I had a ventilator delivered. It can be used with a face mask, but it can also be used with a tracheotomy. It is the last machine I will be issued for breathing. Once I graduate this machine, the only option is to get a vent surgically installed.
I had been asked several times if I wanted a mechanical ventilator. The first time was in the ER, and I panicked because I thought that was my only option if I wanted to breathe again. And I don’t want a ventilator at all. It’s prolonging the inevitable, and is a huge pain in the ass – you have to get a certified nurse to take care of you afterwards, regular caretakers can’t touch it. Nurses are very very expensive. I had also read a blog post from a fellow ALS haver that detailed getting her trach changed out and it sounded like it was a nightmare. She basically just has to sit there not breathing while they pull the tube out of her throat and put the new one back in, there’s always blood. It takes up to 2 minutes to do everything, and the idea of just not being able to breathe for two whole minutes freaks me the fuck out. I don’t want that. But in that moment, if she had said that was the only way I was going to survive this particular episode, I would have accepted. Just to get all of the paperwork out of the way, long enough to settle all of those things. And then turn me off. The doctor also asked if I wanted to be on a ventilator when I met with him upstairs after I had been admitted. Again with the panic thinking that was what they were going to say was mandatory if I wanted to survive this. Turns out that wasn’t what he was saying at all, it’s just that if I am decided to take a ventilator eventually anyway, they can skip all of the troubleshooting and just go to that. Why go through all the trouble finding leaky hoses if you’re just going to replace the entire engine? I understood the logic. But no vent for me today thank you.
The ventilator machine I was issued is standing on a little tray table in my room, because we’re not quite sure where the hell we’re going to put it. I don’t have a bedside table since that’s where my wheelchair parks. If I’ve been freaking out about any of this, it’s the issuing of this machine. What it signifies. The final frontier as it were. The lack of time it represents.
I’m okay with dying, but I’m sure as fuck not in any hurry to do so.
I come away from this experience with two key takeaways. The first is that I am extraordinarily lucky to have had 8 years and I really need to get off my ass and get my affairs in order because I have less time than I would like to think I do. The second is that UTIs are seriously nothing to fuck around with. My stepfather’s mother died of one. It’s entirely possible that I almost did. I have orders to talk to my urologist about potentially getting on a small dose of antibiotics as a matter of course to prevent UTIs from happening. It’s one more pill to take, but if it spares me another uti, it’s all worth it.
So that was my first adventure! My first hospital stay! My first death scare!
And this is what I mean when someone asks what I’ve been up to and I reply “nothing much, but that’s a good thing.” I’m just not built for this kind of excitement. You can have it.
NOW if you’ll excuse me, I’ve got some paperwork to get in order.
It’s time to add another entry into the reverse baby book. Baby’s lasts. Baby’s last step, baby’s last time cutting her own food, baby’s last time tying her own shoes, etc.
Baby’s last time getting off the toilet by herself.
That’s a new thing that I just don’t get to do anymore apparently. I’ve been struggling with it lately, my wheelchair seat is 2 inches taller than the toilet seat, so it’s always been a bit of a haul to get up back into my chair when I’m done. Transferring to the toilet is getting difficult, but it is much easier than transferring off. As long as I am transferring from a high surface to a lower one, I can do it. But the last three times, I haven’t been able to get off of the toilet very easily at all. And last night I had to call J in to help me. After giving me some Ativan because I had a panic attack about the whole thing.
It’s weird how I come up with these little physical tips and tricks to get my body to do the thing, workarounds that I create to make up for the loss in strength, that I cannot for the life of me remember how exactly they function when my strength starts to go beyond that point. Now, was it that I put my foot here and lean forward? Or was it more like the other foot was in the back? And did I grab the bars or did I push off the seat? How the hell did I do this simple thing before? And why isn’t it working right now, what’s different? It’s a bit like asking the caterpillar how it walks, once you stop to think about it, you can’t do it again.
He was able to grab me under the arms and swivel me onto my seat. Surprisingly easy. So that might become our game plan for a little while. The other option is to start using the hoyer to get in and out of there, but that’s just a logistical nightmare. I’m glad I’m still able to stand for a moment so that we can get thunder pants around my ankles and up, I’m not sure what we’re going to be able to do about that when I can’t stand anymore. We’ll figure it out. It’ll be demeaning and horrible, but we’ll figure it out.
I feel like it’s a demotion. I have lost an ability I had before through no fault of my own and I get to live with a consequences of that. I wasn’t quite ready to give up using the bathroom on my own. I knew it was coming, but I’m still not ready for it. It is easily one of the worst parts of ALS, how humiliating it is while it’s killing you. I still maintain that Alzheimer’s is the worst disease to have, and I’d very much rather have this than that, but it’s a pretty close race.
There will be many other entries into the baby book of Doom, this is just the most recent. But it’s one I’ve been dreading for a while. I don’t mind being helpless as much as I mind being gross. It’s unpleasant for literally everyone involved. In a very special demeaning way. I should have asked if I could have them reroute my intestines to a bag while they were doing my feeding tube. Then I wouldn’t have to use the toilet at all anymore. It would bring a whole other set of problems I’m sure, but God damn it.
I have a much happier post to write! But I needed to get this one out of my brain while it was so fresh and the timing was here. I’m sorry to bum you out. I’m doing okay really, these things are going to happen. Incrementally, with prejudice, for the rest of whatever’s left of my life. It’s just how it is. It doesn’t make it any easier, but I should know to expect things like this by now.
Enjoy pooping in private my friends, it’s a privilege.
I did not die on the operating table.
I also did not have chlorhexadine used on me.
I DID, however, have an allergic reaction to – I’m assuming – the antibiotics they put me on before the surgery because I had a UTI. I was a little bit itchy on my arms before the surgery, but afterwards it was a full-blown rash down my sides that became a traveling nightmare of itch. So unfortunately, I was not spared the itching this time either. But it was not at the negligence of the hospital crew! Progress!
They attempted to do the surgery laparoscopically, but couldn’t manage it for whatever reason. So they wound up having to do open surgery. I now sport two puncture marks and a 3 inch incision. The healing has gone okay, I’m having some minor issues with the bumper on the outside of the two digging into my skin because I may be too fat for the tube that they used. I’m waiting on the doctor to call me back to discuss that further. The pain was not as bad as I honestly expected. I haven’t had to take the opioids nearly as often as I would have figured. Tylenol and Advil have been taking care of it just fine, usually. It’s typically not so much painful as uncomfortable – like a bloated sort of “I’ve had too much to eat” kind of feeling rather than a specific sharp” I’ve had surgery” pain.
My nightmare scenario of being unable to get out of bed to use the toilet never materialized. By the time I needed to do the thing, I was able to shift myself. I’m pretty much back to where I was, except that twisting to reach things is harder. Or currently impossible. I’m sleeping with the AVAPS machine on my bed instead of in its little cubby because I cannot reach over to turn it on and off. Scootching myself in and out of bed is far more laborious at the moment, but it is not impossible. Just time consuming.
The tube is just a future proofing for now, I’m not using it at all. Every day though, we need to flush it with water to keep it happy. It is a very strange sensation to have suddenly drunk 60 ML’s of water without having swallowed it. Hopefully I don’t need to actually use the tube for quite some time. I am having no troubles chewing and swallowing, the only trouble I have eating at the moment is physically getting the food into my mouth, because my hands suck. Otherwise everything is grand.
Hopefully this is the last surgery I have to have, unless I decide to install a ventilator. Hopefully that’s some distance down the road. For now I have two tubes sticking out of my torso, and I am now a series of tubes. Like the Internet. It’s one more concession to the disease, but I’m not really having any big feelings about it. I had big feelings about the idea when it was first presented to me, and I had some big feelings when the actual surgery was scheduled. The first time. But now I think it’s been such an ordeal I’m just glad to have it done. Now I just need to have it heal and it will be another part of me and that’s all there is to that.
I could have done without the itching though.
So two things. One, I did not die on the operating table. Two, that is the longest I have ever gone without posting. I apologize for that.
Actually, three things. I have not yet had the surgery. And oh boy is it a tale of woe and drama!
We arrived at the hospital and were wheeled back to what would be my room for my overnight stay. I got into my little dressing gown and took out my facial piercing and sat around for a long time waiting for them to come get me. Actually no, I’m misremembering. I didn’t wait very long at all for them to come get me for this one. I went back pretty quickly. They put me under, and I woke up.
Thank God right?
And then they were telling me about how they hadn’t been able to perform the actual surgery. Something about how my anatomy was wrong, how my stomach was tucked up under my ribs and they couldn’t actually get to it. My diaphragm had atrophied to the point where it was pushed up and my stomach was hiding under there and they couldn’t get to it the simple way. We were going to have to try again, with radiology.
That sucked.
What also sucked is finding out that they had used a skin prep for the surgery that I am allergic to. It’s called chlorhexidine and it’s very common in surgery. And because it’s very common in surgery, I make a very specific point to tell them that I am allergic to it beforehand. I kind of make a fuss about telling them that I am allergic to it. Because it’s in everything. When I woke up my stomach was covered in a brown mark, which I thought was iodine, which they should have used, so I figured I was in the clear, but two days later I was covered in a very very itchy rash, which lasted for 2 weeks. Weeks. I spent those two weeks in a Benadryl haze, covered in itchy medicine. Bastards.
The new surgery was scheduled for January 4th. Same as before, a small puncture wound to fit the tube into, minimally invasive, super quick healing, the only difference being that they were going to use radiology to guide them instead of the camera. Unlike the previous surgery, this was only scheduled as a day surgery. Again, traded in my civilian clothing and took out my piercings and made a huge fuss about the fact that I am allergic to chlorhexidine do not use it. For fuck’s sake. Jay joined me in on this refrain with the nurse. It is very very sucky to have an allergic reaction and be unable to scratch because your hands don’t work, and you also cannot apply lotion because your hands don’t work. So you have to wait for your best friend to get home from work so he can help you apply itchy cream because your hands don’t work. And also you lose two weeks of your life because your brain’s in a fog because of the medication. I was wheeled into the room finally and asked to scoot on to the operating table which I had to break it to them that I am completely unable to help them do that, so they hauled me over and I helped them as best as I could. They then asked me to lay down, and I had to reiterate what I had told to the nurse before, that I am unable to lay flat. They indicated that they had a wedge pillow for me, which set me at about a 15° angle, which was not nearly enough. I was actually kind of panicking about this. They sensed that, and put me on pure oxygen and the anesthesiologist started the calming medication. I was able to lie down and think about nothing but my breathing and force myself to pull air in and push it out and then I was asleep.
And then I was awake. And they were telling me that they were not able to perform the surgery. Because my anatomy was wrong. Because my stomach was tucked up under my ribs.
Pretty much the exact same thing I had been told before. I’m not entirely sure what the radiology was supposed to do for them and why it didn’t work but the practical upshot is once again I had been put under and nothing had come of it. So they sent me home.
And the next day I broke out into a very itchy rash because once again they had used chlorhexidine on me.
There are not enough swear words in the world.
So, the only option after that was surgical. Instead of going down my throat into my stomach, they have to go through my abdominal wall straight. It’s a bigger deal surgery, and they have to knock me completely out, and it’s a bigger risk of course. A longer heal time. We couldn’t schedule the surgery for a long time, because COVID took up all of the hospital beds and they put a hold on all elective procedures. We are going to try to do it. Laparoscopically, using a tiny incision and a tiny camera. Failing that, she will have to make a slightly larger incision to put the tube in, but she’s very confident that we can do this and it will be still minimally invasive. To be honest, I will be happy if they can do this without using chlorhexidine on me. My surgery is scheduled for April 4th.
I have to say I’m pretty freaked out about this one. The surgeon still thinks it’s a day surgery and I’ll be able to go home that same day, and I hope she’s right. We’ve booked me an overnight stay just in case, and will send me home if we’re able. She went over all of the risks to the procedure, of which of course one of them being not being able to get off of the ventilator and having to spend a day in the ICU until I can breathe on my own. A person in my ALS support group had this surgery and his vital lung capacity dropped 30% afterwards. He went in with 70% and came out 40%. I’m sitting at about 35%. I am terrified about coming out of the surgery and not being able to get off of the breathing machine and having to decide if I want a vent or not because at this point I think I would want to vent but we haven’t planned or budgeted or even seeing if we can afford a nurse to be here basically 24/7 to monitor the ventilator if I have to be on one. I’m afraid of going in for surgery and coming out on a ventilator being unable to eat, drink or talk ever again. I’ve been through this twice now and I’ve suffered no problems from the anesthesia but I haven’t been put under completely with breathing support and I’m worried about them stopping my breathing and me being unable to start it on my own again. Which is you know the reason we’re doing this now instead of when I actually need the feeding tube to get this out of the way. Basically: one guy I know has a horror story and it’s got me rattled. I shouldn’t be so freaked out. I know better. It’s probably going to be just fine. There’s just some worried little part of me that is having a field day with what-ifs.
Surgery is one week from today.
They sent me a cleaning kit for my body, two bottles of cleaning solution to be used the night before and the morning of surgery. To make sure that I am clean as a whistle before they go cutting on me. The cleaning solution is… 2% chlorhexidine. The surgeon herself had provided me with written instructions and verbal instructions and she had not mentioned sending me any kit; rather, just to wash up with a kind of soap called hibiclens.
Which it turns out is also a solution of chlorhexidine.
Luckily I called her up today and she told me I could use dial soap instead and it would be just fine. If I were to actually use the soap that they recommended, we would not be performing the surgery because I would be a red itchy mess. I had given some thought semi-seriously to having Jay write on my body: DO NOT USE CHLORHEXIDINE.
So anyway that’s what’s happening. The surgery hasn’t happened yet. We’ve had two false starts, 3rd and hopefully final attempt next week. If you’re the praying sort, pray for me. Hopefully I come out of this with an additional hole in my body and it having been the last surgery I have to go through.
Hopefully they don’t use any fucking chlorhexidine.
It’s finally happening. I’m getting a feeding tube placed. My surgery is slated for November 24th, the day before Thanksgiving.
I don’t NEED it yet, not even remotely. My ability to swallow has not been hindered by my disease at all. I’m still able to eat perfectly. My breathing, however, is becoming enough of an issue that this surgery needs to move forward. Any time you go under anesthesia, there’s risks. But with my breathing numbers being what they are, the risk is far greater for me, and they are getting worse the lower my lung capacity gets. We need to get ahead of the surgery before it becomes completely impossible to perform. That’s why we’re doing this now.
Just because I’m getting it now doesn’t mean I have to use it. I’ll still be able to eat normally. Some basic maintenance will have to be performed daily, just flushing the tube with water and maybe changing some gauze daily. Eventually when eating becomes a chore, I can eat what I feel like eating and then just use the tube to supplement the nutrition I’m not getting because it’s too burdensome to eat. And then of course when I’m not able to eat at all, it will be my main source of calories. But I feel like that’s a long way off. My arms are going to quit before my jaws do. I’m going to have to have someone spoon feed me, before I have to use the feeding tube, but I think I’m going to be eating for a long time still. The installation of the feeding tube is literally just because I won’t be able to survive the anesthesia with my breathing being what it is for much longer.
We had the consultation last Friday, to answer any questions that I might have and to go over what the procedure is and nail down any details. I didn’t have a lot of questions, because I am a compulsive researcher and had already looked up a lot of it. I was told they were going to keep me overnight – THAT was a surprise. All of my research had indicated that this was a simple outpatient surgery. But no, my clinic typically keeps patients overnight for observation, so this will be my very first overnight stay in a hospital! I’m not sure how I feel about that, some combination of nervous about the procedure as a whole plus annoyed about not being allowed to sleep in my own bed plus excited for a new experience. I know damn well I’m not going to be able to actually sleep that night; no one ever sleeps in a hospital. I was kind of hoping to come home after the surgery and climb into my own bed while I was still kind of doped up on painkillers.
I’m not nervous about the surgery itself at all. It’s a super basic surgery, very little can go wrong, and the recovery rates are very quick. People in my support group have said that it’s not difficult at all except for the first day. The main thing I’m worried about is being able to transfer in and out of bed with a stomach wound. I basically have to use my arms and drag myself across the bed to get in and out to use the bathroom, and it’s a HUGE effort. If I’m absolutely unable to do so though, we have a Hoyer lift, and we’ve practiced using it. We’re not exactly smooth practiced professionals with it, but I think we can get the job done. I’m also incredibly pain tolerant, so the concern isn’t really that it’s going to hurt too badly to move, more that I will be physically unable to do so. I guess we will see how that goes.
The clinic called to make the appointment on Monday, and the first appointment they had was for Wednesday November 24th, the day before Thanksgiving. The date actually worked out very well for a lot of reasons, primarily because Jay has that week off work. He takes so much time off of work to take care of me I really didn’t want him to have to take more days off on my behalf. We don’t really celebrate Thanksgiving because it’s a colonizer holiday, but we do like to eat so we typically just overeat and call it good. We won’t be able to do that on Thanksgiving this year because I’ll be waking up in the hospital with a gut wound, but we can make up for that at any time really. We will have a make up Thanksgiving dinner. Maybe even two. No one can stop me. MWUAHAHAHA
I’ve been sitting with the idea that a feeding tube was coming for over a year now, and the idea gained more solidity earlier this year when my pulmonologist basically said no. Really. You’re going to have to do this and soon. The clinic before last, I made up my mind to bring it up the next time I spoke to him, and next Clinic I was ready to make the appointment, but then my pulmonologist retired and I had a new one who wasn’t quite as gung-ho about it. I thought about it and contacted him after Clinic was over though, and asked him to set it up anyway. I’d like this over with. While I still have my contributions to my out-of-pocket maximum paid, before all that refreshes, and just so I can be done with it. I’m not in a hurry to get it done, not at all, but it’s this big deal that’s been hanging over my head for months and months.
This post is going to serve as my announcement to my friends that I’m getting this surgery the week after next. I purposely allowed myself a week to sit with the knowledge that I had the appointment and everything was said and I was ready to go. I wanted to let feelings settle in, before I was ready to answer questions and ready to talk about it. I’m doing surprisingly okay. I kind of figured it would be a much bigger deal? And maybe it will be once the surgery is done. I know I will be a bundle of nerves the actual day of surgery of course. But the significance of this surgery has not devastated me like I kind of expected it might. This is kind of it. From here, the next surgery is going to be the installation of a ventilator if I decide to have that. And I don’t think I will, at the moment, but that’s a problem for future me to work out. But this is the next big big step, the next big concession to my disease. I’m getting a feeding tube placed because I’m not going to be able to eat food like a normal human being. I’m going to have to eat blended food and give up one of the things that I enjoy very most in life. I love to eat. The main thing I’ve missed during this whole pandemic is eating in restaurants. And while getting the surgery right now doesn’t mean I HAVE to use the feeding tube, it’s an indicator that I’m GOING to, someday. Unless of course, my breathing is so shitty that it kills me first, which isn’t exactly a happier thought.
For now though, I’m handling it just fine. I’m a little nervous about the surgery itself, because I’m always nervous about surgeries, because there’s always a risk associated anytime you go under. But that’s not a big Cosmic worry, that’s just common sense worry. I’ve had ample time to mentally prepare for this. I have plans in place. We have prepared for the worst case scenario of me not being able to transfer in and out of bed. I’m doing okay. This is going to be just fine.
I can’t wait to share all the gross details with you once I’ve had it done.
“Should I throw these out,” J asks me, indicating a pile of adult diapers beside the toilet. They have tabs to close them on the sides rather than being the step in brief kind I usually wear. I’m not able to stand and pull up briefs on my own anymore, so I bought these to try out, in a bid to hold on to my autonomy. It was a massive failure; I’m not able to get them under my ass properly, never mind operating the Velcro-like tabs with my failing hands.
“No, keep them,” I tell him. “Once I’m not able to get out of bed at all we’ll want them. You’ll need to undo the diaper, get me in the sling, lift me up, get the diaper off me, get me to the commode or whatever to do my biz and them lay out a fresh diaper. We’ll need the tabbed diapers.”
“I thought we said we didn’t want kids,” J tells me.
We laugh our asses off.
*************
The clip on my catheter bag has somehow come undone and there is a pool of pee next to the bed. I’m mortified, of course, and feel terribly about J having to clean it up.
“Someday I’ll be dead,” I tell him brightly, smiling like a television ad, “and you’ll never have to clean up my bodily fluids again!”
He eyes daggers at me while I laugh, like, “what the fuck is wrong with you.”
*************
Some days, the gallows are hilarious.
I’ve been away. Obviously. I have a good excuse – my mom died. Twice, actually.
…It’s ok – she’s back with us. We’re all still getting used to everything that this entails. A new normal for everyone involved, new limits, new routines, new paranoia, new hospital bills. New PTSD for both of us.
It was 4am on a Sunday morning when she came into my room, eyes wide and her voice high pitched with panic: “I can’t breathe” between frantic gasps. I whipped off my AVAPS mask and pushed it into her hands, and she tried desperately to use it to breathe. I called 911, screaming for J, at the other end of the house and on the other side of a closed door.
He never heard me.
My mother collapsed into my wheelchair while I breathlessly gave the operator my address. Could I get her on to the floor, he wanted to know. Mentally screaming in panic, I would have given ANYTHING to be able to perform CPR on my mother. I explained I couldn’t and why. I watched my mother’s eyes roll back. She stopped attempts at breathing and slumped over.
She’sdeadshe’sdeadohfuckshe’sdeadshejustfuckingDIEDjesusfuck
I told the operator she’d lost consciousness, optimistically. The operator asked again could I get her on the floor. I saw flashing lights outside. I couldn’t yell loud enough to get J to come unlock the door to let the paramedics in.
I was absolutely, totally Helpless.
I couldn’t do CPR. I couldn’t get her in recovery position. I couldn’t yell loud enough for help. I couldn’t unlock the door for the paramedics. I could do nothing.
J was awakened by the paramedics pounding on the door. They came in, hauled her on to the floor and started CPR. I was a helpless audience, trapped in my bed while a room full of people in uniform brutalized my mother’s body. CPR is a harsh, ugly thing to witness – I already knew this, but I was unable to look away. I heard the word “asystole”, which my brain knew meant dead. My mother was dead. I was right. I’d watched her die. They continued to push. They wanted more room. They moved her to the kitchen. All I could do was sit in my bed and hear them work some more. I heard “got a pulse”. I heard “let’s move her”. A police officer came in and said they were talking her to Saint Vincent’s.
J was finally allowed to come to me; the emergency crew had blocked him from my half of the house. He helped me get dressed while I told him what happened, still wide-eyed with shock. We drove to the hospital. And waited. I signed a DNR, in case she crashed again. We’d talked before about it, and she’d said she wanted to be let go. I wondered if I’d fucked up already. I wondered if she would wake up. I called my brothers. I finally let myself cry. I felt scared and completely helpless.
Mom spent ten days in the ICU.
We found out later she’d flatlined again en route. We were very, very lucky to haver her still with us, but it was perfectly clear that it was a very fragile hold on life. Every minute was by chance. I visited her as often as I could. Thanks to COVID, there were some really fucked up visitation rules which meant only my older brother and I could visit. At All. Not per visit, not per day, at all. She could die any day and my younger brother an his wife weren’t allowed to see her. Her prognosis changed by the hour, and the doctors made it seem like any minute my brothers and I were going to be called upon to decide to pull the plug on her or not.
….Which was pretty fucked up, because she was conscious sometimes, just sedated as fuck. Day three she regained consciousness but couldn’t communicate because of the tubes and the drugs, and we weren’t sure how much brain damage there was from being dead for a bit. So even as they’re asking us whether or not to consider a lifelong ventilator our a graceful exit, we’re like, shit, dudes, she’s RIGHT THERE. Maybe lay off the sleepy juice for a bit and see if she can tell us what she thinks? She was conscious yesterday, why didn’t you ask her?
For most of her ICU stay, she was intubated, so she couldn’t communicate well. Just vague gestures towards her feet when they were cold. Weak motions at her face because she wanted the tube adjusted. And when she finally could communicate, she usually asked for simple things. Her eyelids were sticky. Her lips were dry. Her feet were dangling off the side of the bed; could they be lifted back into place please.
Things that an able bodied visitor would have been able to take care if in a jiffy, but things I had to call a nurse in for every. Fucking. Time. I felt useless. I couldn’t get my mother a sip of fucking water. I could fix her eye crusties in two seconds with a damp washcloth if only my fucking hands worked.
Meanwhile at home, I was left alone for the first time in years while J went to work. We were both nervous about it. The silence in the house was deafening. Mom is a quiet roommate, but I can still tell she’s around. I had to be extra careful to have my smart watch or my phone on me at all times in case something happened, so I could call J. We had to figure out lunches for me that didn’t require heating or prep that I could have in my mini fridge, since no one would be around to get me food. I ate a lot of lunchables.
I realized that I couldn’t make myself a sandwich now if I wanted to. I’m helpless to feed myself without prep.
Mom recovered enough to spare me the decision to kill her or not; in fact, got the vent removed, moved to a biPAP machine, and then to a regular nasal cannula and was moved to a regular hospital room in one day. I brought her a celebratory Pepsi, which I had to ask a nurse to pop for her. She didn’t remember anything, thanks to the sedation drugs.
After a week in the hospital, she had to do three weeks’ time in a nursing facility to recover. She wasn’t even strong enough to hold her cellphone when she was admitted. She quickly built up her strength, though, like, SUPER quickly, and though she’s not quite 100% back to where she was, she’s something closer. I was deathly afraid of her checking in and not checking out of that place, but she worked hard and busted out of the joint.
She, of course, is worried about taking care of me. She’s not back to her former caretaker duties and she may not ever be again; any time she comes in to talk to me about something, she has to sit in my wheelchair and catch her breath from coming in. Once she worked up the nerve to sit in my wheelchair again, that is; that took some working up to. I told you: PTSD. We’re not back to how things were but she’s home.
I’d give anything to be able to keep up the house and cook her healthy meals and cater to her so she can just concentrate in healing. She’s fucking DIED. TWICE. I want to give her the luxury of time to repair.
But I can’t. I’m helpless.
Helpless in my own behalf sucks and I hate it. Having to rely on others to do things for me blows.
But this helpless on behalf of others bullshit? It can fuck right off. I just want the strength to make my mom an egg sandwich. Or do her laundry. I just want to help her. Whether it’s fetching a drink or sweeping her floor.
Being this useless blows goats.
The thing is.
The thing is after a year of suppressed grief, after a worldwide trauma, after trying so hard to keep your shit together and just survive a debilitating and humiliating disease, a fucking pandemic, buying a new house, moving into said house, isolating from all of your friends and family, from society, and being unable to celebrate milestones in a way that you deserve to…
The thing is, when you get that first injection. That first vaccine hit. The first hint of “maybe this is going to turn out okay”. That first glimmer of hope that maybe things can return just a little bit to normal. You find yourself letting out a breath you didnt even know you’ve been holding. Your brain shifts out of survival mode, and allows you to think and to feel a little bit of everything you’ve been holding in for the last year.
The thing is, maybe you fall apart.
Maybe fall apart and write a really angsty blog post about how it’s been seven years since you got diagnosed and you just kind of emotionally barf all over the Internet.
The thing is, I’m much better now.
The second shot was a fucking doozy, as advertised. But it came with a sense of peace. In two weeks after that, it came with the promise of normalcy. Not long after that, I had friends in my room, unmasked, chatting like nothing had ever happened. There was one quick moment of panic –OH MY GOD THERE IS SOMEONE SITTING ON MY BED WITH ME AND THERE ARE NO MASKS WHAT THE FUCK ARE WE DOING – and then it was over and then we were talking like old times. Natural. Normal.
This thing is, it was really really nice.
And then I got together with another group of friends last week. We had Moroccan food. We played games and bullshitted all night and again, it was nice. Normal. I had forgotten what conversation tasted like.
The thing is, there is definitely an end to all of the madness. I can see it from here. It’s lovely. Wait for it.
It looks pretty good from here.
The thing is, we’re going to be okay.
I’ve been Officially Sick for seven years now. Two years longer than the outside average life expectancy, and still doing really well, all things properly considered. Yet, for some reason, this year’s Saddiversary was really, really hard.
Like. Really fucking hard.
A solid week leading up to the actual date saw me in a total despondent state. True and proper depressive episode, sleeping and crying a lot, medicating the living shit out of myself, unable to find joy in anything, looking desperately to climb out and get just a little happy again. The tiniest bit. Anything. Please.
I imagined myself in a room. Depression Land. It’s very much like my actual room, only greatly exaggerated. The bed takes up most of it, and has shackles. I spend over 80 percent of my time in this bed. This last week I had to ask J to help me medicate the skin on my ass where it is threatening to become bedsores. Bedsores caused by sedentary lifestyle fed by depression and then feeding back into it. The bed is my world. There’s a bright spot here, a pulsing lifeline that is my laptop, my connection and my distraction and my salvation. It’s a dim light, during these episodes, the barest of dim glows, but it’s still there. There’s a bed caddy with the remote controls for my tv and my bed, my phone, and my drink. (Holy shit am I going to miss drinking soda. I will hold on to the ritual of my morning Monster energy drink for as long as I can. SODA IS AWESOME OKAY) In Depression Land, it tastes like nothing. There’s piles of blankets here but they don’t keep me warm. They entangle, instead, and stifle.
There’s a pile of luggage in the corner. It’s a matching set, poison green with little corona viruses all over them. They smell like dust and bitterness, and they represent all the things I missed out on because of the corona virus. One whole year of my extremely limited life, with my rapidly diminishing ability, gone to this fucking virus. There are twin suitcases here labeled “Portland Dining Month”. One nice sized one labeled ‘Saddiversary celebration in San Francisco with J’. One labeled ‘birthday 2020’. Six or seven labeled with various concerts and show names. There’s also a pile of cardboard boxes, hastily marked with Sharpie, “Help moving”. That one smells especially bitter.
The bitter aroma also extends to my wheelchair, relegated to a role as bathroom taxi and doctor appointment shuttle. In Depression Land, the SS Opportunity is covered in mildew and cobwebs. It never gets to go anywhere fun. She’s not my freedom, here; there’s nowhere to go. In Depression Land, this glorious machine is nothing but a tool, and a laborious one at that.
My closet, too, is mildewed. All my cute clothes relegated to the darkeness because WHAT EVEN IS THE POINT.
Books, turning to dust, snacks, tasting like ashes.
I fucking hate Depression Land.
The only good thing about it is, I know my stay is temporary. Even if it doesn’t feel like it. I’m usually able to remind myself of that, when I’m desperately scrolling through Amazon looking for some stupid little tchochke that will make me happy for five minutes or trawling the depths of TikTok to find something, ANYTHING..
Eventually, I remember.
Or in this case, eventually, the day comes and goes.
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….
***WARNING: SHAMELESS PLUG AHEAD***
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?
***HERE IT COMES***
https://www.facebook.com/donate/3825898757530235/
***WE NOW RETURN YOU TO OUR SCHEDULED POST. THANK YOU***
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.
<3
My friend posted this on her facebook recently.
Every time it shows up in my feed, I want to respond “walk”.
..But not everyone would find it as funny as I do.
I miss hugs.
I’m not even talking about being touch-starved because of COVID, either, though that is also certainly a thing. I’m talking, full body contact, chins on each other’s shoulders, arms wrapped tight, feeling each other’s heartbeat hugs. Rhythmic syncing of breathing hugs. Every thing in the world is going to be okay because I have you. Here. In this moment. Hugs. Swapping body heat and comfort and love hugs.
The good shit.
I’ve been told I give great hugs. I didn’t used to. My household was not a hugging family at all. No touchy. In junior high, I’d watch the girls hug each other hello, even though they’d seen each other scarcely two hours ago before lunch, and think: I want that. So over time, I let myself do that. And I confirmed what I’d suspected all along:
HUGS FUCKING RULE.
I miss them so much. I miss the touch. I miss the ritual of it. I miss standing in front of J and throwing my arms around his neck, him wrapping his arms around my ribcage and squeezing until my spine popped. I miss the kind of hugs where the other person runs their hands over your back.
Proper hugs are another thing ALS took from me. You can not hug someone properly from a wheelchair. You get a cheek touch, clumsy arms around your shoulders while you try not to stick your face in their cleavage. Awkward. They’re still good because they’re still hugs! But they’re not GREAT hugs.
Being in a chair is lonely. Being in a chair in a pandemic is hell. I miss hugs.
If you can, today, give someone a hug for me. Get you some of that good, good oxytocin shit. Aww yiss. Hugs fucking rule. Have one on my behalf and improve your day.
I was recently asked if I would be willing to speak to a group of people about the good work that the ALS Association does. My answer was an immediate and fervent HELL YES I WILL. I’ve expounded on their virtues before, and they will certainly will do again, it occurs to me that I have never devoted a post solely to that purpose. It’s long overdue. So here it is.
I was introduced to the ALS Association the day I was diagnosed. I was immediately given a phone number and a contact name, with promises they’d be able to help me along my newfound journey with a terminal disease. I waited a couple of days to call them, of course, because I needed time to let things settle. But once I did call them, within only a few short days I was sitting with a social worker in my living room. I liked her immediately, as I’ve come to like every single person I’ve ever met who works for the organization. The social worker was kind, patient, and definitely knew her stuff. She offered her sincere condolences for my diagnosis, and introduced me to the ALS Association and everything it could do for me.
So, as she introduced me, I introduce to you – what the ALS Association does for me.
INFORMATION: They had a wealth of information for me right out of the gate. She came with a stack of booklets on what to expect from various aspects of the disease; feeding tubes, ventilators, dietary needs. Even as she was handing the booklets to me, she was quick to point out that I absolutely did not have to look at any of this information or even think about it until I was ready. If I didn’t even feel up to taking the booklets, I did not have to. They had information about coordinating the care I was going to need, with solid advice on how to arrange it, or more appropriately – how NOT to arrange it, how to designate a primary person to manage all of that for me. I was given a book for that, too. I was given information about biweekly support groups. I was given information about hiring an elder care attorney to get my affairs and estate in order. In the space of one afternoon, I had every question answered, including questions I hadn’t even thought to ask yet.
SUPPORT: the biweekly support meetings are not only a place to support and commiserate, there is usually some kind of a presentation. How to select a caregiver, and how to know when to start that process. How to use a Hoyer lift with demonstrations. That sort of thing. I’ve only been to a couple, but in every single one of them I have felt heard and cared for. It introduced me to the ALS community at large, which is a subject for another blog post soon to come. In addition to the support groups, during my quarterly clinic days one of my appointments is with my social worker and a check in to see if there’s anything else they can do for me. They put me in contact with other people in the community who had resources I need, and set me up to be a penpal with other people in need of support themselves. They joined me on my house hunt. They helped me look for a van. They found me a lawyer. The annual Walk to Defeat ALS is a huge event that raises a lot of money, and is the single greatest ALS community event, hands-down. I cannot begin to describe to you how it feels to have such a horrible disease, and to show up to one of these events and see the LITERALLY THOUSANDS of people who have showed up to support me and those similarly afflicted. It awes me every time.
RESEARCH: the money raised by the ALS Association goes to fund research, along with everything else. Very important research. The ice bucket challenge raised literally millions of dollars for this endeavor. Research is the only way we are ever going to find a cure for this disease. The ALS Association funds research that leads to clinical trials, like the clinical trial I’m currently participating in. This research WILL ultimately save lives. Until then, it is helping make lives less miserable day by day.
FINANCIAL ASSISTANCE: twice a year, I am eligible for a $500 grant from the ALS Association to help me cover my expenses. Last year that grant paid for my medicine. And raised toilet seat. And wrist braces. I don’t even need to tell you how expensive it is to have ALS; I’ve said it before, and I’m sure you can imagine. One of my meds (for which I received a separate grant thankfully) costs $19,000 out-of-pocket. A month. Anytime you tack the word medical on top of something, it’s price goes up three times over. The cupholder on my wheelchair costs $60. The $500 could never hope to cover all of my expenses, but it is such a tremendous relief to have. A break. And all I have to do is ask for it.
EDUCATION: the ALS Association has a class in mindfulness that I was able to take. In times to come, I am very much going to need that skill, to get out of my own head when things get horrible. It was a good class. The ALS Association also hosts a research symposium, which features speakers on all of the latest research and medical trials happening. There’s always a QA session after the presentations, and I have never failed to learn something new and exciting.
PURPOSE: through the ALS Association, I’ve been able to participate in a number of extremely fulfilling projects. I’ve been interviewed for newsletters, I loaned my picture to fundraising efforts, I’ve been connected to people I can hopefully help. The moment I was diagnosed I knew I wanted to help in some way. I have been dealt a poor hand, but I can do something with it. I can help other people. Through research I can contribute to science and help find a cure. My life and death will mean something on a grander scale. The ALS Association has helped facilitate this. I cannot possibly be more grateful for that.
EQUIPMENT: the ALS Association has a wealth of equipment that they are happy and eager to share. Every single time my doctor has suggested some new piece of equipment, the ALS Association was quick to offer to loan me one. I mentioned in clinic that it was getting hard to stand up in the shower; they loaned me a shower chair. Then a shower bench when I could no longer step into the tub. They loaned me a cane. I had trepidations about graduating to a wheelchair when the time came, they loaned me one so that I could get used to being in it and try it out with no pressure. They offered to loan me a power chair to get used to it and see what kind of features I wanted. When I begin participating in clinical research in San Francisco, I was extremely nervous about having the airlines handle my wheelchair; the thing costs $47,000 and is my freedom. I was super paranoid about it getting damaged. The ALS Association loaned me a power chair for the express purpose of traveling in it so that my own chair was not at risk. The airline has managed to damage wheelchairs I was using four times in the last year and a half – I cannot even imagine what I would’ve done if that damage had been done to my personal wheelchair. I would be completely…well, screwed. They knew that damage was a risk and still very happily loaned me the chair. Because that’s what the ALS Association does. They help.
Let me be perfectly clear here: NONE OF THIS HAS COST ME A DAMN THING.
NADA.
Life with ALS often feels insurmountable. With the help of the ALS Association, I feel less alone in this struggle. I feel less lost. I feel like maybe there’s a little hope for us.
They’re good people, is what I’m saying.
Let’s talk about drugs, baby
Let’s talk about THC
Let’s talk about all the good thing and the bad
About C-B-D!
About five years ago, I documented my experience and thoughts about marijuana. They were… Not exactly complementary. More a diatribe, if I’m being honest.
My conclusion then, and remains today, that I fully support the use of cannabis for whatever purposes the user deems fit, and I fully support it being legal everywhere for all times.
I still don’t like being high, and THC does nothing to alleviate any of my symptoms. There was another experimentation with THC between then and now, and I found an edible that got me high without making me sick, and it just cemented the fact that I really don’t like being high. So I gave up on cannabis entirely for a very long time. It’s done some very amazing things for people I love, and I completely believe it has amazing medical benefit potential and wants more research, for sure. I’ll not disparage its use for anybody else, it’s just not for me.
I really wish it were. I really wish it worked for me.
I’m currently on three different drugs for mental health. Two for depression, one for generalized anxiety. It’s difficult to say if they’re working or not really, because I have legitimate reasons to be depressed and anxious and so it’s hard to tell what’s genuinely a good day and what is the medication making things okay. They’re definitely helping; I have less sad brain days with the meds than without them, for certain. ALS just puts everything on hard mode, and this year has exacerbated all of that beyond belief. Of course I’m depressed and anxious, I have a terminal disease, but I suffered from those brain problems even before I was diagnosed. When those three drugs don’t quite cut it, and some nights they don’t, I have a scrip for Ativan to take the edge off. It definitely helps. It zones me out and usually negates any panic attack I may be having at the moment. Which is nice.
The problem is I don’t always want to zone out. If I’m having a full-blown panic attack, then certainly, yes, please God, zone me out, make it go away and let me breathe. Quickly. But in general, my level of anxiety is far less dramatic than the mind racing, can’t breathe, holy shit I think I’m actually going to die RIGHT NOW panic attacks. An ongoing low level panic attack perhaps, a buzzing in the back of my brain, 1,000,001 things clamoring for my attention and every single one of them stressful and sad.
There’s just so much to think about, things to do, things to plan for, everything coming at me at all times from all sides. It’s really easy to get overwhelmed. The tiniest little side thought can lead to a spiral of panic and fear. A television show that shows someone in a hospital, connected to machinery and unresponsive? My brain automatically thinks “that’s going to be me someday, and how I do not want that life for myself”. WHEE DOOM!! Wondering if my loved ones will have the strength to let me go when it comes to that. A character finding it hard to find the right words to say will lead me down the road of thinking about how I’m not going to be able to speak at all someday. Usually I can fight the downward spiral, but not always. Some days I lose.
I have so much to do. I have so many plans to make, things to document, wishes to make known and official, legal obligations to fulfill before I die. There is never a moment in which I could not be doing something to help my loved ones through my death. Items to be sorted. Organization to be done. If I don’t actively fight it, I fall into an anxious despair just thinking about everything that I have to do and being so overwhelmed I end up doing none of it and feeling trapped and never feeling like I can just… take a breath. I sit here and do nothing all day, knowing full well that my time is short. The weight of those obligations makes it impossible for me to relax sometimes and the crushing anxiety of all of these responsibilities stifles me constantly and I spiral.
Some days I just want to not think so hard. Turn my brain down a little, not off. Sometimes I just want to breathe a little bit. Not necessarily forget everything, but just an emotional step back and a breath of fresh air. Get a little space between me and my anxiety so it doesn’t seem so insurmountable.
So what’s a girl to do?
A month or two ago, I was out doing errands – properly social distanced and very careful of course, I’m not a covidiot. My friend and I were both pretty stressed out, in general because… gestures vaguely at everything… and because of the pressure of the errands and danger being out in the world. One of our stops was a store called New Seasons, which is like a small local Whole Foods but it doesn’t suck. While we were there, we noticed they had a special on CBD drinks and we had both been curious about it. Now, I had tried pure CBD before as a tincture and it did nothing for what I was trying to do with the time. It didn’t affect my headaches, my twitching, my panic attacks. But I know a lot of people that swear by CBD, and extol its virtues for everything – particularly stress. It’s becoming much more prevalent and accepted for its benefits. So that being said, and everything being what it is, my friend and I figured what the hell, and bought one each and drank it.
SELTZER WATER AND POT IS NOT A GOOD TASTE BY THE WAY. VERY BAD. EVEN IF YOU SAY IT IS BLACKBERRY FLAVOR IT IS POTBERRY.
And a little while later I felt… Okay. A little more relaxed, maybe. Feeling a little more capable of handling things at the moment. We were able to finish up our errands with a bit more calm.
Relaxed until the aftertaste hit of course. BLEAUGAHAUGHERGH. POT TASTES SO GROSS!!
Pot burps notwithstanding, it was much more in line with what I wanted. Not brain-dead, not staring at the walls, just a little more emotional wiggle room. And I fully concede that it may entirely be a placebo effect. But if it works, then fuck it. Even if I just believe that it works and is doing nothing. GOD BLESS THE PLACEBO EFFECT.
So I guess I’ve made peace with cannabis. I found something that does something. It does not, however, do one major thing that I really wanted it to do – I really wanted something to stop my brain over thinking before I fall asleep. Because THAT’S when the anxiety and depression get me. I stare at the ceiling and my brain spins for over an hour before I’m able to fall asleep finally. I wanted CBD to take the edge off of that and let me just rest, maybe. Nope! Turns out CBD can cause nightmares, apparently? Anecdotally, mind, it’s not been properly studied (get on it, Science!), but it apparently does with me. I already dream weirder than most, my subconscious does NOT need any chemical assistance with coming up with unpleasant situations involving insect faced people in a gorefest speakeasy shootout or menacing floating toasters in my bed about to touch me. So apparently I can’t take it right before bed, which is too bad. I’ll be sticking with Ativan and Ambien for that when things get rough.
But for now, at least I found a little daytime breathing space. Which is amazing in itself.
I will fully accept that minor victory.
I feel badly that I don’t post as often as I used to, because it’s getting harder, but I know it sucks to have to refresh a blog over and over in the hopes there’s something new.
Should I set up a mailing list? Is that something you’d be interested in?
That was the longest break I’ve ever taken. Between no longer having a job, and COVID warping the reality of time itself, the last three months have gone by in an instant and an eon at the same time.
It’s been long enough I think I need to do a general check-in. So that’s what this blog post will be all about. If you don’t care, that’s totally cool and I will have something else for you very soon.
Strength
My FRS scale has gone down a point or two. I’m beginning to notice weakness in my arms now. I can still wiggle my fingers and grasp things between my first finger knuckle and my thumb. That’s going away though. My laptop is becoming too heavy to manage. I can still just about move my toes, I can’t kick with any real strength, but I can stand as long as I’m leaning heavily on something else. This means I can use the walker for a step or two, but I haven’t tested anything longer than a couple steps lately. There’s not really any way to pick me up off the ground if I fall, here, so I’m not going to take stupid risks. I’m still able to transfer myself to my wheelchair, and to the toilet from there, so I’m still pretty independent. I can still write a little bit, especially if I’m using a special pen that one of my blog readers was kind enough to send me. Along with some lovely edible treats. The pen she sent me is a kind of crutch for my finger, and it is much more easy to control with fingers that are weak. I’m not going to be writing any new novels anytime soon, but I can still sign my name and fill out short forms.
Breath
For the longest time, we weren’t able to test my breathing because Covid. When you’re dealing with a disease spread by droplets and aerosols, the last thing you want is someone purposely and forcibly blowing air into your face. Last month during my medical trial though, after getting a Covid test to prove I was clean, we were able to test my forced vital lung capacity. The Covid test sucked so bad. They dug around in the very back of my sinus cavity and I felt like I was a dead body being prepared for mummification and they were going to pull my brain out through my nose. I was coughing and sneezing and I watery for a couple of hours after the test. It sucked, is what I’m saying. The last time we tested my breathing back in March I was at 52%. When this all started I was at 115%, to give you an idea. This last trip I tested at 46%. Quite a drop. I am definitely feeling this change, I am so much more easily out of breath. I am still breathing okay this, I only noticed when I exert myself somehow. If I lose my breath it takes me a bit longer to catch it back. There’s no need for breathing apparatus yet, except the AVAPS machine that I use at night. I’ve still got some time.
Eating
I need help cutting up my food, but I can still feed myself. I have not begun choking on food or having things go down the wrong pipe – at least no more than average people do. It’s awful when I do choke on my own spit though, because in order to get my breath back I have to take these huge ragged breaths in to be able to cough it out, and it makes this horrible death rattley noise when I do it. It scares the living shit out of everyone around me, and I don’t have the breath to explain to them that I’m all right – as long as I’m choking I’m still breathing – but it’s gonna sound like I’m dying for a minute. Which is not to say that I’m not also scared, being unable to breathe is one of the worst things in the world, but I know that the choking is only temporary. And even if I do pass out, there’s a couple of minutes before any possibility of brain damage sets in, and my airway will probably be cleared out by somebody attempted CPR and up be fine again. I have not had to make any concession to the disease with regards to how I eat. So far, we haven’t had to make any concessions to the disease in regards to what I eat, either. I am still fat under medical advice. I have an obscene amount of junk food in my room for snacking on. I mean, obscene. I’ve got a little three drawer shelf unit full to the brim, and two square baskets that slide into IKEA furniture full. I have a habit of craving something obscure, and then allowing myself to get that thing because fuck it, I’m dying, but the only way I’ll be able to find it on Amazon or wherever is by the case. So now I’ve got a case of whatever. People also gift me edible things all the time, because they are amazing, and they don’t want to burden me down with material things but they do want to give me a present. Candy is perfect in that regard. And I love it. I love it all. The problem is I don’t actually eat that much junk food, so will have a couple of pieces of whatever and then it just sits here while everything else piles up around. Hence, three drawers and two baskets. This isn’t a complaint, at all. I love candy. And obscure Australian treats, and macadamia nuts, and pop tarts, and marzipan, and Lara bars, and Apple chips, and every other thing that is currently shoved in to my little space. Love it.
Speech
My voice is becoming affected. If I talk for too long my voice goes a little wobbly and raspy. This is most likely due to my breathing more than anything, there isn’t enough breath being forced out when I speak to make my voice strong. I can still enunciate properly, and get my point across. But something’s happening there.
Mental
ALS doesn’t really affect your cognitive behavior, which is all at once the best and worst thing about this disease. You retain your faculties, but eventually you become trapped in your own body with no way to communicate, still perfectly aware and understanding of everything around you. There are some cognitive issues possible though, and I’m wondering if I’m having problems with that. It seems recently that I have much more of a problem getting my point across because my thoughts are so scattered. It could quite possibly also just be ADHD or something, but I’ve never noticed it so much as in the last year. I have lots of other ADHD traits so who knows. I was never formally diagnosed with that but I also never formally sought out a diagnosis for that. My brain has always gone very quickly in circles and I seem to say something completely unrelated to what we were talking about; but I do have a definite path that I used to arrive at what I said. We were talking about chocolate, which makes me think about dogs being unable to eat chocolate, which makes me think about a cute dog video I saw with a dog biting at a stream of air from a compressor, which makes me think of really windy weather, which makes me think of another video of an umbrella rolling down the beach with dramatic music, which makes me think of going to the beach. And that’s why when you say “I really like this dark chocolate”, I respond “we should go to the beach soon”. There’s a path there, a definite way I arrived where I did, you just don’t see it. Lately I am having trouble even explaining that path out loud, even though my brain understands completely.
Emotional
This one. This is the one I’m struggling with the most, if I’m being honest. I have the absolute worst time being unable to help myself. All my life I have been entirely self reliant, and any help I accepted was on my own terms. I obviously don’t have that luxury anymore. Friends come over and help me unpack, and I can literally do nothing to help them, and that eats at me. Even though I know they don’t mind, and are even happy to do so. I sit here in my room and see something that needs to be done, and it would take me all of five minutes to take care of it forever if I were able-bodied. But I’m not. And so it must become this hour-long effort to get someone here with enough time to spare, and explain what needs to be done, and then have them do it. And so much remains undone because it seems so stupid to call someone in here just to push a thumbtack in that had fallen out of the wall. It is frustrating in a way that I have never thought possible. And it absolutely eats at me to know that it’s just going to get worse. More than my own death, I fear being a burden. And my friends and family can say all they want, that I’m not a burden, but I will never be able to believe that. And that’s just how it is. Still, I have many more good days than bad days. I try to take things at face value as they come and be gracious about the help I do receive. I mean, I’m still going to completely obsess over it mentally and examine it from every angle in minute detail And stare at the ceiling until 3 o’clock in the morning thinking about it, but… um… Where was I going with that.
Anyway.
House
We are slowly but surely getting into this house and settling in. It is taking an excruciatingly long time because of the three people living here only one of them is able-bodied and he has a job. Thanks to some amazing friends who have come over to lend a hand, we are much further along than we would otherwise be. For example this is what my study looks like now!
Neato torpedo. The place is actually beginning to resemble my living space now. We’ve been pulling things out of boxes that I haven’t looked at in over five years because they were packed up from the house that I owned and then just put into storage while I lived in the apartment. It’s nice to be able to go through these things, and get rid of so much. My friend Tamra did all of the work you see up there. She is absolutely an amazing person and I’m lucky to know her. We have some semblance of the living room, rather than boxes piled upon tables and couches, you could almost sit in it. We are still discovering the um.. Character that this house has. Like the skeleton of a rat in a rat trap in the crawlspace. And the very interesting decisions or more owners made in regards to the electrical wiring. And duct placement. Our back porch is still a mess of boxes and other things needing to be sorted and there’s an entire storage unit out there, full of even more stuff from my old storage that we need to go through. We are taking it a little bit at a time. This house feels much more like a home now, already, and it will only become homier.
Travel
I am still participating in a medical trial which necessitates traveling by plane to San Francisco once a month. It’s usually a two or three day trip, but it seems to take half the month to prepare and recover from it. As per my previous post, traveling in a wheelchair is not easy. I can’t tell you much about the trial itself, except that I do undergo a spinal tap each and every time. It’s… becoming routine. Which is not something I ever thought I’d say – spinal taps aren’t something I would ever think someone could get used to? But here we are. I can, however, slip you this link which details some of the preliminary findings of the trial in general. The results are looking pretty good.
Outside influences
I have to keep all of my mental and emotional facilities trained to what’s immediately around me, because the outside world is pretty fucking scary right now. I live near Portland, which the president is trying to paint as a lawless expanse of criminals and terrorists, but really there’s protests happening in two square blocks in the inner city and the damage is mostly confined to the federal buildings. Driving through downtown is not unsafe. The president has promised a tax break should he get reelected, which would mean disability becoming unfunded by next year, so I’m pretty scared about that. I’m really scared about the slide into fascism that our country is taking and the wannabe dictator going unchecked when he says really dangerous shit. Some really scary shit going on outside and I can’t do anything about it, so I do my best to bury my head and just not think about it. Sometimes that works. Sometimes it takes Ativan. Otherwise I spend every waking minute angry and terrified. I cannot wait for a time when a week can go by and I don’t even think about the president. I hope I live to see that.
Overall though there’s nothing too horrible or too awesome to report. I’m settling into the new normal at the house, settling into the new normal of my disease day by day, and settling into a sort of routine. One of my absolute biggest stresses was finding a house, and getting this place has helped immeasurably. So I don’t really have all that much to complain about. Overall I’m doing pretty good. I still feel like I have some time. I still have things to do, things to say, cats to pet.
And all this junk food to consume.