#i've been sick since the weekend and my test came out positive

[thevioletcaptain]

So I've been quiet on here a lot longer than planned.

The reasons are many. The reasons are varied.

The reasons are mostly fucking horrible.

Under a cut because it's long. Check tags for content warnings.

First was the expected absence: my parents came to visit me in Los Angeles over my birthday, so I spent the first half of October showing them around whenever I wasn't working a shift at my shitty department store day-job, or in class at UCLA.

Then, almost immediately after they went back to Australia, I got a second job working as a personal assistant for a composer. This was (and is) an extremely fun and rewarding job, but meant having one more thing on my weekly schedule, which was an adjustment.

Given that until halfway through last year, I'd been out of work since I immigrated in 2019, it took a while for me to get used to having so many concurrent responsibilities, and I'd just started to get a handle on things when I got sick right before the holidays. I took many covid tests -- all negative -- and eventually determined that it was just last year's strain of flu, which I hadn't managed to find time to get the shot for due to the aforementioned super busy schedule. I'm almost positive it was thanks to a particular customer at the aforementioned shitty department store job who coughed hard enough in my direction for their germs to get through my n95.

Anyway, last year's flu was a monster, and I spent a week in bed with a fever, then several more weeks being utterly drained and with a horrendous cough to match. It took a full month for me to recover, and then in mid-January, almost as soon as I started to catch up on all the things that had fallen behind while I was sick, things got bad, then good, then worse, then better, then much, much, much worse.

Basically, it starts with my dad being diagnosed with prostate cancer. He'd told me in October when they came to see me, but the surgery was scheduled for the tail end of January.

The surgery happened on a Monday, and it was a complete success. They got it all in one go. No chemo or radiation or further treatment needed at all. I spoke to him on the phone after he woke up, and he was in good spirits. Happy to have been given the all clear by his doctors.

I told him to watch Star Trek: Strange New Worlds & Evil while he rested up at home, because I'm writing specs for both this year and wanted him to be able to read them and know what was going on. He's the one who got me into sci-fi and horror, after all.

He went home.

He was home for two days.

He started feeling a bit rough on the Thursday. Short of breath. No appetite. Mum took him back to the hospital, just to be safe.

Turns out he'd had a mild heart attack. They couldn't figure out why. The echocardiogram didn't show any issues with his heart.

Then over the next couple of days, his breathing got worse. They took a scan of his lungs, and found that they were extremely inflamed. They'd given him covid tests but they came back negative. We told them about a work accident he had about 20 years ago, where a switchboard he'd been working on exploded in his face, and he'd suffered from inhalation burns among other things.

They thought that maybe something during the prostate surgery had caused irritation in his already damaged lungs, which put stress on his heart and caused the mild heart attack. He's never had any issues with his lungs since that accident, but they thought that maybe he'd just adapted to the damage over the years without realizing.

They kept trying different treatments to help his lungs heal. Nothing seemed to work. His breathing kept getting worse. They had him on as much oxygen as possible without intubating him, but it wasn't enough, so over that weekend they decided that they'd need to move him to another hospital with a more specialized lung unit.

When they were preparing to do that on the Monday night, he crashed. Another heart attack. Bigger, this time. They intubated him. Sedated him. Called my mum and told her to come in right away because things looked so bad.

But then he rallied. By the morning, though he was still sedated and intubated, the doctors were confident that with the right treatment at the specialized lung unit at the other hospital, he'd be okay. He was still in a rough condition, but stable. They transferred him to the other hospital.

He was given another covid test. This one came back positive.

My mum and brother called me once it was a reasonable time in Los Angeles to let me know what was going on, and the next day my brother booked me a flight back to Australia. I had to leave for the airport about five hours after my ticket was booked.

I got to Melbourne on February 1st.

For the next two weeks, dad was intubated, sedated, and in an isolation room. Every few days, they scanned his lungs again, and they were slowly improving.

Finally, he stopped testing positive, and was moved to a regular room in the ICU. Then he healed enough for them to extubate him and wake him up.

On February 13th, he was conscious enough to squeeze my hand when we went in to see him. On February 14th, he was conscious and capable of talking enough to ask a nurse in his ward to bring him his phone, and called mum first thing in the morning to wish her a happy Valentines Day.

Two days later, on Friday 16th, his lungs looked good enough on scans that they felt it was safe to do an angiogram, which they wanted to do just to double check that there weren't any issues with his heart that they missed with the echo.

They did the test. They found massive blockages. 90% blockage in one artery; significant blockages in two others.

Even though he'd barely recovered from covid, the blockages were bad enough that they scheduled him for open heart surgery on Monday 19th. They said without surgery there was a 100% chance that the blockages would cause another massive heart attack that he would not survive. They said there was about a 20% chance that he'd have complications, but only about 4% that they'd be serious/life threatening.

Like before, the surgery went well. Triple bypass, in the end. We got a call late on Monday afternoon to say that he was in recovery and looking good. His heart was functioning perfectly. They'd bring him out of sedation that night. Keep him in the ICU one or two days just as the standard post-op procedure. He'd spend a week or so in a cardiac ward after that, then head to a physical rehab ward for a couple of weeks until he could build back the muscle mass he'd lost while sedated.

We went in to see him the next day. Tuesday 20th. His 66th birthday.

He was tired, but looked good. Color in his cheeks. He made a couple of jokes. We left after about 45 minutes because he was pretty worn out, and we wanted to let him get some rest.

But then after, that his breathing started to get bad again. By Wednesday morning, they'd switched out the oxygen prongs in his nose for a big, high-pressure mask again. They called to let us know they were going to intubate him again so he could rest while his lungs recovered a bit more.

They struggled to get the tube in.

His lungs were deteriorating badly. He kept getting worse. We couldn't go in to see him because they were working on him all day.

At 9pm we got a call to say that he was just getting worse. They had him on 100% oxygen. He just wasn't absorbing it. His entire body was under massive strain. They were doing everything they could, but he just wasn't improving.

They said we should go in right away.

We got there by 10pm. My brother and his wife arrived about the same time. We went in to see him. He didn't look good. He looked pale. But he was warm, and he'd come back from the brink before, and we were sure he could do it again. We stayed with him for about an hour, and left not long after 11pm. Went back to my brother's place because they live closer to the hospital.

We were there about half an hour before they called us again. Just after midnight. He was gone.

That was about a week and a half ago, now. It still doesn't feel real. He was only 66. He hadn't even retired yet. He was working full time up until the week before Christmas, and had planned on going back to work a few days a week after he'd recovered from surgery. He never had any heart trouble, or lung trouble. He was active. He was fine.

My wife Zel and her mom flew in a couple of days after it happened. I barely remember anything from the past two weeks. Everything just feels fake.

I've been trying to write something to say at the funeral, which we've finally been able to arrange for next week -- it was delayed because we had to wait for dad to be released by the coroner. I don't think I'll be able to do it.

Anyway. That's where I've been.

It'll probably be a little while longer before I'm around here much, let alone posting with any regularity, because I'll be in Australia helping my mum & and my brother sort everything out. I have no idea how long I'll be dealing with stuff, or when I'll be able to make words cooperate enough to post anything, but I'll be back eventually.

I'm trying to keep an eye on Discord (I'm violetmatter over there) so you can find me there if you want. But yeah, I just wanted to let you guys know why I've been so quiet.

#cass says things #this is a very long #and heavy post #so i guess i should include some content warnings #uh #christ what do i even tag this with #cw: hospital #cw: health #cw: death #cw: parent death

[fuck-customers]

This is a fuck coworkers.

I work overnight at a convenience store. In recent weeks, we've lost a lot of our staff for various reasons. One person's out on medical leave, our old assistant manager found a new job and quit, and a third person was fired for giving out free cigarettes. A fourth person is transferring pretty soon, and our part timer who works in the early mornings has a history of flakiness, which just leaves me, the store manager, and the new assistant manager who's being trained from scratch. We're all overworked and we're all fucking sick of it. Which is why I was totally okay with my manager taking a weekend to himself after working nearly 3 weeks straight with no days off.

We knew about this long beforehand. There were no surprises. We had a plan: since I know bits and pieces of the manager's duties, I was going to help our assistant while bossman was out of town. He gets his weekend, and I get to actually go home before the sun comes up for once, which has been a struggle ever since the clocks changed. Win win. But THEN, the day before my manager leaves, our assistant manager calls off due to COVID. Now, the veracity of her claim is up in the air. My boss thinks the timing was no coincidence, and that she's probably a bit nervous about having to do his duties while he's away, but she presented proof of a positive test, so the higher ups have to give her PTO just in case. Bossman's obviously disappointed, but not discouraged. He puts together a last minute plan in which the part timer comes in to relieve me at 7 am, and leaves me to do the manager's stuff all by myself. I'd just have to call someone from a different store to help me with the paperwork. No biggie. One small problem: remember how I said our part timer has a history of flakiness? Yeah. I wasn't having that.

I've been flaked on by her many, many times in the past, and I wasn't about to wait until lunchtime to get off work (leaving a store that's supposed to be open 24/7/365 unattended would get me fired, so I'm stuck there until someone comes to relieve me). So I call the district supervisor and I ask her to send someone to help me with the paperwork that morning. However, she tells me that my manager will be there that morning, when I know FOR A FACT that he won't. He told me himself, but he DID NOT tell HIS boss, which is inarguably more important. So now, I was backed into a corner, and I spilled the beans and told her what his plan was. I emphasized that I was worried that I wouldn't get off till much later, because, you know, flakes, and told her if nobody came to relieve me before 7 am, I wouldn't be able to work the following night because I'd need to waste a whole day catching up on sleep. Perfectly reasonable thing to be concerned about, right?

She understands, but now my manager's upset with me because she's blowing up his phone, because he failed to tell her he'd be taking that extra day off. Now, I know district managers are typically harder on store managers than us regular cashiers, but requesting two days is perfectly reasonable and he had a backup plan. There was no reason not to at least TELL her, and she would have found out regardless.

Anyway, she agrees to come in and help me with the paperwork, so I still get to go home at a reasonable time like I planned, but I still feel bad, so I put in a good word for my manager in an attempt to save his ass. I tell her it's just a stroke of bad luck that his store is in such disrepair, which, yeah, honestly it is. Losing half your employees in 2 weeks is bad luck, plain and simple, and while I agreed that my manager needed his days off, it really feels like I'm left to clean up everyone else's mess. And now I feel like a pariah at work because I was never made aware that he didn't tell his boss the truth, and that I wasn't about to rely on someone I knew I couldn't solely on her word. But whatever. I'm not gonna be at this job forever, at least.

[unbidden-yidden]

A rough accounting of what has happened since last weekend:

Had a slight sore throat but tested negative, so I still drove ~6 hours out of state to see family with Spouse

Did a couple things with Spouse's family while mostly masked/outside and then went back to the hotel

Woke up completely out of it and Bad on Sunday; I stayed in the hotel while Spouse spent time with family

Fire alarm goes off sometime in the late afternoon-ish. I ignore the first shorter run. Second time it goes off long enough that I realize that it's not a test and throw on my shoes and grab my bag and head out to the parking lot in my pajamas.

Turns out the hotel was on fire??

But like only a little bit

I couldn't see any smoke during my slow lap around the building, but that doesn't mean much

Basically every other person there is a 25 - 50 year old man, which makes the fact that I'm not wearing a bra more awkward than it strictly needed to be

Some guy runs up to another group of guys and asks "this motherfucker on fire?" This is greeted with laughter but no answers.

An hour and ten fire trucks/cop cars later, we're cleared to reenter the hotel

Smells kinda smoky but I really can't otherwise tell that there was a fire so that's good I guess

Also did I mention that this hotel doubled as a trucking school?

Seriously one of the most liminal places I've been in a hot minute, not helped by being deliriously sick and out of it

I go to lay back down and realize by now it's dinner time and I desperately need food

I order some soup and go on a delirious ten minute drive for this food

The food tastes weird, but it's hot so it's fine enough I guess

Spouse brings home Covid tests he's been randomly gifted by his family

The next morning I test myself since hey - we have tests and it never hurts to be safe than sorry even though it came up negative a day and a half ago

And

It

Comes

Up

Positive

So now, I'm in another state with a ~6 hour drive home, Major Work Things the scheduled the next two days, and now I'm tamei for Covid

(Spouse tests negative for Covid miraculously, and so far is asymptomatic)

(We skip out on the goodbyes with his family anyway though and hit the road)

It takes us 11 1/2 hours to make this normally 6 hour drive home, because I keep having to stop to set up work-related coverage

My driving is mostly okay but this is the loopiest I've been driving in a hot minute

(Spouse doesn't drive, so I am the only driver unfortunately)

We get home stupid late, and I collapse into bed only to get up very early the next day and proceed to work 6+ hours for coverage reasons.

I manage to work slightly less on Tuesday, which is good, because by that point I physically cannot stay awake for more than an few hours at a time and can barely talk.

Spouse is also now very obviously sick

Wednesday I sleep

Thursday I sleep

Friday daytime I sleep

I bring in Shabbat on time, and then proceed to fall asleep at 9:00 p.m. and sleep until 12:30 p.m. on Saturday

Sunday - well, after I got up on Saturday I managed to stay awake 14 whole hours! But I'm still sick as hell. Spouse is also still very sick, and both of us retested positive as of Friday afternoon. We'll see what the rest of Sunday holds I guess.

So anyway, time is fake, last weekend feels like a year ago, and some things are better not smelled or tasted whilst sick anyway.

[virtualcarrot]

so... i tested positive to covid

i tell the neighbour/friend/coworker who was kind enough to drop by on her way to work and leave the autotest that officialized it in front of my door

''ok sure but you came here [at work earlier in the week], your office mates are up shitcreek''

... okay... thank you... let's gloss over the fact that I came *masked* with the mildest of throat aches that no one thought twice about, and that I've otherwise always tested myself the moment I caught a cold, much to everyone's gentle amusement, but sure, that's... great...

''thank you,'' i told her ''that's a really heartwarming comment''

''but it's true, though. did you make an official announcement? [insert our customary words of affection]''

''no, I've kept in secret, haven't told the boss, haven't told the team leader, haven't told the person I carpool with on tuesdays, haven't told my family that I saw this weekend''

''pfff, you're joking''

YOU DON'T SAY! NO, I JUST... DIDN'T SHOW UP TO WORK FOR THE SECOND DAY IN A ROW WITH NO WARNING! I'M WILD LIKE THAT! HAVEN'T BEEN TORN WITH GUILT OVER IT SINCE PEOPLE NEED ME TO FINISH MY TASKS IN THE PRODUCTION CHAIN BEFORE THEY CAN DO THEIR OWN JOBS. GEE

[...]

friendborworker: [offers help w dogwalking and groceries]

me, too miffed to risk feeling like I owe her: [refuses, citing other people who alrdy offered me help]

''just say you like them better than me''

''well, they didn't make comments hinting at the fact I'm being willfully careless and contaminating the whole workplace''

''gee you're so susceptible''

I'M FUCKING SICK

[...]

"do you resent me for my comment?"

"a bit, it was undeserved and unasked for, especially with the care I've always taken over this. But i'll sleep it off.''

''well then sorry...''

tl;dr: at long last, i caught covid and am finding out people will have the weirdest reactions to it

#life as a carrot #covid #and how did i catch covid?! going TO THE CAPITAL! fjfjfbfjfjfjfbfjfjf #i should never leave my nice smol city

[cravinganescape]

My throat has been fighting off some sort of infection since last Thursday.

I've desperately been trying to get in contact with my doctor since it happened, only to be told I could only get a throat culture and flu test done by a nurse in my car. I drove an hour out for this and the nurse didn't even conduct the throat culture properly. She swabbed my tongue. Obviously the results came back negative. I had to wait all weekend for the office to open up again. I can't believe the bullshit I went through today trying to get in touch with my doctor, or any doctor, at this point.

I have chronic anxiety and have been dealing with insomnia for 3 years now. Being sick only amplifies this and this entire experience has made me feel so helpless. I feel like I've been dicked around all day today.

I'm not feeling pain anymore, just swelling and still am seeing redness. I was told to try and call back tomorrow morning but no guarantee someone will be able see me. I wish I could say I can't believe this shit, but this is exactly what I expect from the US healthcare system. Especially when I factor in the fact that I'm not on private insurance & the doctor I see works for a NFP.

If you've made it to this point, please send me your most positive thoughts or something funny?? I haven't been able to smoke and all my other anxiety coping tools have only helped me prevent a panic attack. Edibles really only help with the physical discomfort, the feeling that something is trying to claw its way out of my skin. I need mental relief.

#personal #this is also why I haven't been posting as much #im sorry I just can't even focus or harness the energy rn #thanks for listening

[servingliesarchived]

since i started actually plotting with some of y’all again, i’ll get back to y’all just as soon as i don’t feel like death incarnate.

#𝐎𝐔𝐓 𝐎𝐅 𝐂𝐇𝐀𝐑𝐀𝐂𝐓𝐄𝐑 ; nerd central. #long story short my coworker came into work and infected a bunch of us #i've been sick since the weekend and my test came out positive #so i've got the plague #i'm at least glad i was vaccinated before so hopefully this is gonna pass soon but uhh #would not recommend i feel like death #covid // #covid tw #covid / #covid-19 /

[thesickpanda]

Where is My Mind?

Stress can make you feel like you're going crazy.

I cannot emphasize this enough. Long-term, persistent and intense stress well above your baseline levels can make you feel like you're losing your mind.

Life is stressful and when I think back to when the intense periods of stress started in mine it gets a bit ridiculous because I grew up in a domestically violent household with severely mentally ill parents in a country on the brink of civil war with one of the highest crime rates in the world. So I have been kinda stressed for a very long time. However, in more recent months, the level of acute stress I've been experiencing has made me feel disconnected from reality. I've experienced derealisation a number of times due to Lyrica withdrawal and accidental cannabis highs. But this one is different. The depersonalisation I’ve been experiencing is from pure, unrelenting stress. I really did question my sanity more than once.

 In July, I saw my psychologist to describe this feeling to her. She very helpfully drew a diagram which explained the neuroscience of why we feel this way when we've experienced high levels of stress for a long time. It was really helpful to see that because it reassured me that what I was feeling was, as much as this can be said, "normal", given the amount of strain I was under. But the stress hasn’t let up since then and I have been well above my baseline for much too long.

 Long story short, I haven't really recovered since my family visited me last year. 2018 was a year from hell. 2019 hasn’t been much better but for different reasons. Basically, the hardships I’ve endured being the leader of a non-profit all these years reached critical mass and finally, at long last, broke me. After 8 years of pouring all my heart, soul and every last spoon I had into it, I quit last month…and to very little fanfare at that. 3 people turned up for our final meeting, and only because we needed to hand them the organization’s physical assets. We had a little unplanned dinner out and that was that.

I'm grateful to the handful of people who have reassured me they will continue its legacy beyond my departure, genuinely I am, but overall I think I stayed in that position at least a year longer than I should have. I feel incredibly jaded and cynical about the whole thing.

 And I’m sorry if this offends anyone, but screw Sydney’s activists. The vast majority of them can barely call themselves that. I have never been in such an apathetic, vain, self-centered and lazy city when it comes to political activism. This migrant has had enough of trying to get Australians to care about their own issues. (And yeah, the people I handed the non-profit over to? Also migrants).

It is telling that the final meeting was also the night before we moved house (because we always had to wrap our own lives around the goings on of that organisation, not the other way around, which is another major reason we quit). So after an hour and a half’s drive into the city, we had to get home late to get up early the next day to start that fun process.

 But I am getting ahead of myself. Before we ever got to moving day, we first had to find a house. If you haven’t done it before, let me tell you, the process of house hunting on a tight budget in a hostile market is disgustingly stressful.

We were looking from June. The property market in Sydney is unbelievably expensive and even though it experienced a so-called "correction" for a year, (meaning that house prices stabilized instead of continuing to rise), that ended just as we entered into the property hunt. I am extremely grateful that we got the house we did at the price we did, but my God, getting to that point nearly killed me. I keep explaining to people that it felt as if my partner and I ran full blast over broken glass to the edge of a dock, leapt several metres and grabbed onto the barnacles of a departing ship by our fingernails. I really do think we may have been among the last millennials that got on that “property” ship, and it was only because, at long last, we had help from my partner's extremely wealthy parents. After shaming us for a decade for not being able to afford impossible house prices (“ok boomer…”), he finally relented and helped us out. Again, I'm grateful, but also disgusted that this is the world we live in. Housing should be a human right and we shouldn't have this intergenerational greed and infighting over something so basic. Forgive my inner socialist. 

Finding the house was only the first part of the equation; moving into it was the next step.

 The moving process was incredibly arduous. At the time we should have been packing up the house, my partner's work decided to send him interstate for business on multiple occasions. By the time moving day came round, we were not ready and we couldn't afford to pay removalists. We enlisted the help of two amazing friends and Joe's brother-in-law. Again, super grateful that I had their help, but my God, was it intense. It took the better part of four days to move everything. We had to pay off the mortgage and the rent for the previous place for a two-week period, putting considerable strain on our savings. At the same time, we needed to get some work done in the new house so that was being done while we were trying to sort out the old house. The rental laws in this country are a joke and are widely considered to be abusive to renters, including by many of my American friends who now live here. I doubt we will ever see our bond returned, even though we were treated like crap living there for three years in a house that was not sealed, had no insulation or air conditioning, leaked and was draughty, didn't have proper doors et cetera et cetera. I mean, we had maggots falling from the ceiling… twice. The place was rotting and rotten but because my partner couldn't completely colour match the paint when he tried to cover up what was absolutely reasonable wear and tear on one of the walls, I'm sure we will lose all that. As usual, the landlord will claim it costs our entire $1800 bond to get a $50 an hour painter in to patch up one wall.  They always do this. In your contract it says reasonable wear and tear are a few knocks and dings on the wall and that the tenant is not expected to pay for that. In reality, in every rental we have ever lived in,  the landlord has refused to refund the bond when there’s been even the slightest bit of damage, even if we had a record of being model tenants. It was almost comical how hard my partner was trying in the middle of the move to cover up a few scrapes on the walls from moving furniture in and out. It all came to nothing because for love nor money he couldn't find the correct match of paint. And then of course he had to mow the entire grounds of the last rental when he really wanted to be using his weekends to sort out and unpack the new house. Good God, it was awful.

 My partner and I barely spent any quality time together during this period and he was extremely stressed out and distant from me. I totally understand why but the whole thing flared every single one of my conditions and I needed him as my carer. But he couldn’t really do that, as he was trying to do literally everything else. Moving house is hard on a healthy body, never mind one with two chronic pain disorders, irritable bowel and generalised anxiety disorder. And then (because of course), a family member of mine (one of the abusers) picked that moment in time to start harassing me, thereby triggering my PTSD which led to a nervous breakdown which led to intense depersonalisation, insomnia and nausea. Everyone and everything seemed unfamiliar to me, even my partner. I started to doubt whether or not I loved myself or anyone else anymore. I just felt so completely and utterly disconnected from the world. I began to lie awake at night terrified that I was fading away, that I could no longer feel anything other than fear. All the time, people kept saying, “congratulations on the new house! You must be so excited!” But all I could feel was sickness and dread.

 Two weeks after moving in, I had to drop my Lyrica one more time. This drop has been very difficult. All of the stress has led to some dark thoughts in the back of my mind which of course Lyrica then co-opts and exaggerates. I have had a more than a few moments of suicidal ideation. Everything in my life on paper has improved. We are now homeowners, we live in a beautiful part of the world, we've made some new friends lately, things are settling down et cetera et cetera. But I feel like I'm in shell shock after this year and last year. I haven't even had time to process that I am no longer the president of the not-for-profit I founded and formulated an identity around. I just haven't had the time to process literally anything. I've been more exhausted that I have ever felt. Oh, I'm sure everyone will say, “this too shall pass”. But I do not believe that bullshit. Yes, this individual stressor will pass but more horror will come and I know that makes me sound super negative but I just cannot remember a period of time when things were calm for… I can't remember. I just feel like I've been in a hurricane forever.

 So yeah, I'm writing this post while experiencing Lyrica withdrawal which makes me depressed and anxious. It's probably colouring my vision on everything. Fine. But I have been going through Lyrica withdrawal for two years, so it’s kinda become my normal. My final drop is on 26 December after which I will experience two more months of withdrawal and hopefully, after that, some semblance of sanity again. In the midst of all this I have to study for my citizenship test which is at the end of this month. I don't get any government support for my disability until I have been a citizen of this country for eight years, and as I’d like to survive my 40s, I need to get citizenship now. But yeah… studying an eighty-page textbook with an addled brain is just so much fun.

 Of course, during this time we haven’t have Internet because we had to disconnect the old place and it takes an age for it to get reconnected at the new place. We only recently acquired it at the new house. So there are piles of emails waiting for me. Many of them are from friends and I'm glad for that. But there is also a lot of life admin I now need to do. I have to change my address on every account I hold, which is really tedious. We have also had to organise time with family. Because my partner's family helped us get this house, we feel especially obliged to go to every single one of the family events, of which there are many. He comes from a big Catholic family so every relative who comes to visit, every party that's being held, every birthday, wedding, funeral and religious holiday, we’re now expect to attend. We have several in the next few weekends, taking up most of the time we *needed* to be unpacking the house. We’re obligated now.

 In all this negativity, though, I want to say that I am genuinely grateful to be one of the lucky ones to have a house. I know it sounds like I am whining about a good thing. It's not that I'm not glad for this (I know how ridiculously privileged we are). I just haven't been able to really feel it yet. I think that regardless of what happened this year, I’d be feeling this way. Something broke in me last year and just hasn't really come back. I feel shattered.

 And all my chronic pain conditions have been wearing me down too. I found out this year that the operation that cost me and my friends so much money (to remove that nerve in my foot) had failed. Or rather, the surgeon had completely botched it up. I have PTSD from that surgery. Just the thought of going back to have it done again fills me with heart racing terror and cold sweats. I’ve had numerous surgeries before that one and been fine, but the reaction I had from the anesthetic last time was so severe, and the recovery so long, that I genuinely fear it more than almost anything else. And yet I need to go in for that nightmare all over again in 2020. I'm going to be asked to trust a different surgeon to do the same so-called “simple operation” to restore some functionality to my left foot. My right knee is probably also going to need surgery since it has been resistant to any physiotherapy rehabilitation. And on top of all this, my poor partner's health has also taken a hit this year from the stress which is worrying me. Because I can always do with some more worry…

 But hey! This too shall pass! You should be happy! Life is great now! Yay yay yay!

Fuck, sometimes it just want to be allowed to feel shit and to have other people say “okay you can feel shit now. Yes, some good things have happened but right now you need to process the bad and that's okay too”. My lord, if people could just do that for me. If they could just let me feel what the fuck I need to feel.

 What I feel is exhausted, scared, freaked out, traumatized, weird, sick, angry, overwhelmed and fed up. And I need to feel those things before I can feel anything else.

#rant #Fibromylagia #chronic illness #chronic pain #chronic stress #stress #overwhelmed #personal catharsis

[justinsdaysinthedark]

Post # 6 - It is what it is

I'd be lying if I said I haven't spent the past half an hour with tears flowing from my eyes staring at a blank screen wondering how I'm going to get everything I've got floating in my head out. I suppose listening to Coldplay live in Argentina probably wasn't the best choice of music to set the mood. I'll work on that one in the future...

Where do I start? It's been a question I'm often asking myself at the start of these blog posts and it's certainly not the easiest one. What do you guys know? There's been so much happen since my last post on Thursday night.

Friday July 26th: I saw my doctors around lunchtime who came in quite concerned. Whilst they were confident my lymphoma was one called DLBCL (Diffuse Large B- Cell Lymphoma), some tests had come back with suspect results that it could be a more aggressive and harsh type of lymphoma called Burkitt's lymphoma and if confirmed, chemo was starting that night with no time to waste. There was also one marked in the middle (a cross of the two) called Burkitt's Like Lymphoma which is treated similarly to DLBCL. Whatever it was, I couldn't change it. I just wanted answers and if treatment needed to start, let's get it underway!

Adam, my incredible haematology doctor sent off another test of my gall bladder to finally get the confirmation I was after. It was urgent. He had to know. It was reassuring of Adam to state "Justin, we need to know what this is. Preliminary results are due back later this afternoon and that will hopefully rule out Burkitt's. if it is Burkitt's, we'll start chemo tonight and I'll be with you every step of the way - even if I have to stay back a few hours."

I know doctors earn a fair coin on a lazy day, but how many give you that much confidence that you and your health is important to them? I'm going to have it a guess and say not many but alas, I am so incredibly lucky with the team of doctors I have.

4:00pm and Adam strolls in the door heading straight for my room. My heart drops, similarly to what it had when Michael dropped the news I had lymphoma. "Good news. Preliminary results are back and we're confident it's not Burkitt's. You can't rule out anything in life, so there still is a small chance it could be. We're happy to wait for the final results on Monday, figure out a treatment plan from there and start Chemotherapy next week. Spend Saturday and Sunday on day leave and I'll see you next week."

This was news to my ears. In a time of what has been negative or no news, I could spend the weekend with family relatively freely and forget everything was happening for a few hours each day. My Uncle Bob and Aunty Denise were down from Tasmania to see me, as was my Aunty AJ and cousins from Bairnsdale so it all felt like it fit into place.

Friday night saw me considerably more relaxed with this news...that was until Collingwood started and it was the demolition it was. Slightly humorous side note, the nurse came in around 9pm for my nightly observations. Naturally, my heart rate was up a bit more than normal watching the football (118BPM - normally between 70-85BPM). This caused the nurse to call in the team of doctors who wanted to put me on an ECG machine for the night and monitor my heart. I assured them it was because Collingwood were on and if they gave me an hour, I'd be okay. It took some convincing, but it finally worked. Back they came an hour later and it had gone down - crisis averted.

Saturday afternoon and evening was wonderful. I went down to dads for dinner and was fortunate enough to spend some much needed time with family over a beautiful dinner and good laugh.

Sunday was much the same. I went home, mum did a fair chunk of washing for me as I spent it being me. Seeing Courtney, napping in my own bed and even headed over to Fountain Gate and got some much needed new clothes and other miscellaneous items - something that seems so simple but is such a luxury when you've spent the past 15 days in hospital.

Monday July 29th: They say the more you think positively, the more positive news you shall receive....or it goes something like that right? I woke up this morning the most upbeat and best I'd felt in weeks. I felt fine. I felt no pain, almost like I'd woken up from a shitty hotel! In all honesty, I felt like I'm abusing the system however I keep being quickly reminded how much I need to be here. Did I wake up so positive because I lived my old life for 16 hours over the weekend? Is it because I was hoping to hear a reasonably positive outcome with this lymphoma test? Probably a mix of both if I'm honest. But whatever it was, I was hopeful.

Adam came around at roughly 10:00am. Didn't really have much for me in terms of news but more of an outline of the day. If they hear the results of the test they were waiting on, they'd write me up a treatment plan ASAP and get chemo started this afternoon. At worst, I'd be starting it tomorrow (Tuesday). They just needed that definitive answer of what type of lymphoma I have - an answer I'd love more than anybody.

Either way, we agreed i'd need a PICC (Peripherally Inserted Central Catheter) line in which basically is a long-term cannula. It runs from the inside of my arm right up and around and stops basically just outside my heart. This is for easy access for the chemotherapy and even an easy exit for blood tests - something that's proven incredibly difficult to take from me over the past few days. Additionally, these lines can last up to six months verses the three days you get from a cannula. There were too many positives to say no to!

This wasn't scheduled for any time in particular, so 1:00pm came around and I was about to be taken to get the PICC line in.

Just as I was about to leave, Adam came in with a few words I'm all too familiar with. "Well, the pathology tests we were waiting on have come back inconclusive..."

Woah. Wait. What? How do tests of my gall bladder that was removed six days ago come back inconclusive? How does one of the main sources not have enough 'data' to tell them what sort of lymphoma I have? I was just stunned.

Adam continued "As a result, we can see some signs of Burkitt's lymphoma and that's what we're going to treat you for. You're young. You should be able to handle it and it's better to over treat you than under treat and be stuck where we are at the moment. It's an intense 16-day chemo treatment that will totally wipe out your red and white blood cells as well as your platelets. We foresee you being in here for another 3-5 weeks, depending on how well your body goes getting these levels back up to normal post this first treatment..."

I honestly say this but that's all I remember from this conversation. I was hoping I'd be heading home this week but looks like that definitely won't be happening. Today marks day 40 of the past 55 days in hospital (day 15 of this stint) and if I go off the longest suggested time expected, I have another 35 days to go. That honestly crushed me.

I got taken down to get my PICC line in - quite an easy process. Very similar to putting in a larger cannula, just a whole lot longer and uses local anaesthetic as well as being guided by an ultrasound and X-ray. I'm lucky enough to have two ports, which will hopefully speed up some of my medication and how much they can pump in. Does it feel weird? The only weird part was feeling it slide down past and near my heart - but that's okay now!

By the time I return, dad made his was in to try and help process the news. We get Adam in to once again explain the process. In layman's terms, I'll be starting an intense and high-dose 16-day chemotherapy program kicking off tomorrow (Tuesday) morning. Most of the time across the next 16 days, I'll be hooked up via IV drip getting whatever medication is required. I think I saw I have rest days on days 7 & 8 which I suppose will give me two days to look forward to. At the end of the day, it's something I'm not certain on and will be a day by day process and constant learning about what's going into my body to help fight with me.

I do have one request for you all. With my body not producing red or white blood cells or platelets over the next few weeks, I do request if you are planning to visit however are sick to stay away those extra few days. With my immune system going to be at the lowest it's been, I don't particularly want to pick up something I don't need. Additionally, as much as I'd love flowers, they're also banned due to the infection risk of the spores mixing with the chemotherapy and causing some dangerous damage from the inside.

At the end of the day, if you're not sure please message me and check as I'm not entirely sure myself about everything. I'm constantly learning as I'm going.

How am I feeling? I'm nervous. I'm nervous at the unknown. How will this affect me? How bad am I going to feel? Will I lose my hair? What will my energy levels be like? In advance, I do apologise if over the next few weeks I'm not myself. Truth be told, that's because I probably won't be.

In a way, i'm finally excited to start my treatment first thing tomorrow morning (after yet ANOTHER lumbar puncture). I was so envious of both people next to me getting their first rounds of chemo today. I know mine will be intense but I just can't wait.

I've learnt so much about cancer and chemotherapy over the past four days and I know there's so much more to learn. Today I learnt I'll be incredibly highly cytotoxic, which basically means all needles and anything used on me need to go in a separate bin just for me. Additionally, I'll have to get used to the good old double flush after the toilet to ensure all waste is disposed of. Mouth ulcers are a big issue with most chemo patients as well. I'll have to start brushing my teeth after every meal and taking a special mouthwash 3x daily to assist with keeping these under control. There's plenty of other little things, but they're two I least expected.

Everything really hit me last night....not like it did tonight though. I just had twenty minutes to reflect and it just became a sudden realisation. What I'm going through is real. It's not a 'joke' anymore. It's not something they're looking at as a potential cause. It is the cause. I have a legitimate medical issue and it's finally time to fight lymphoma. All well and good to be talking the talk like I have been - it's now time to walk the walk. This sits well with me. If I give somebody my word, I do whatever I can to get it achieved. Unfortunately for the lymphoma throughout my body I've given it my word and it's time to fight it. Round one begins tomorrow morning.

I leave tonight feeling a whole lot better than I did when I started tonight's post. I didn't learn from my words earlier as Coldplay live from Argentina is still playing however I'm in a much more comfortable mind space.

My best friend of a lazy 20 years, Dylan visited tonight with his partner, Jacqui. One phrase popped up more than most and they made me aware it was a common phrase coming out of my mouth.

"It is what it is."

I can't control what's happened to me as "it is what it is." What I can control from here though is how I fight lymphoma. Thanks for the visit tonight guys, I appreciated the two hours spent here in what's been an incredibly tough afternoon.

Much love.

Juzz xx

[canaryatlaw]

okay, I'm tired but today was fine. woke up at 8:45 and hopped on for court. took a while to get the case called, but everything went okay. one of the defense attorneys I have a friendly relationship was in the courtroom with me (it was the one without a zoom coordinator so they just dump everyone in the courtroom and let the judge sort it out) so we were chatting a bit and catching up on cases (he was originally on the case I won at hearing last month before the Respondent replaced him with R's cousin...) so that was nice because it's been a bit since I've talked to him. I went to take some trash out and realized it was super nice out, so I pulled out the little table and chairs we had on the balcony and did the rest of my work out there for the day. I was pretty productive for the first half of the day or so, but then kind of ran out of things to do lol so I was kind of stuck after that. I'm growing increasingly frustrated with my coworker (my "work buddy") who I've had a lot of difficulty with trying to get even small stuff done. It's funny because a year ago I easily would've said he was a superior attorney to me (and I do think that's still true in some senses) but I definitely feel like I'm more competent at the day to day stuff at this point. I don't want to like, say anything to my boss because he's my friend and that would feel like a shitty thing to do, but I'm definitely getting frustrated. so that's not great. Roommate got home from work with news that one of her kids has two covid positive parents and under the school's new covid policy they've still been sending their kid to school and haven't tested them since last week, and apparently the kid was coughing all day, so she was a nervous wreck because she'd also been feeling sick (which isn't at all out of the ordinary for her), so she did an at home covid test while I started dinner that was thankfully negative. She was still pretty sick though, so she went to bed shortly after dinner (which came out pretty good). So I had most of the evening to myself, which was fine, just chilled out and did my thing. Eventually I showered and got ready for bed, and now I'm here. It's just a bit before midnight, trying to do at least a little bit better with getting to bed earlier since I've been super tired lately (it occurred to me over the weekend I might be having a mono relapse but I really refuse to entertain that possibility at the moment) so on that note I'm going to go to bed now. Goodnight friends. Hope your Monday didn't suck.

#daily journal #March 2022

[horrorhouse]

Personal: Don't mess with Covid

I've been sick with a cough and chest/nasal congestion since 1/6. I found out a few days before that my hubby's nephew contracted Covid-19 the weekend we were all together and we were likely exposed. John (hubby) got sick around the same time as me. He had a Covid-19 rapid test that weekend and the results came back positive. He's been off work (paid leave, thankfully) since then and will be going back on 1/24. I ordered a Covid home test (I'm agoraphobic) but I'm still waiting for it to come in. I don't know for sure if I have Covid, but I'm just guessing that I do because John's positive. We haven't been dealing with any serious symptoms like loss of smell or taste or changes to our skin or lip color. It just feels like a severe cold or sinus infection. I haven't been vaccinated because I just had not gone to get the jab because my agoraphobia's kept me inside, so I've been safe. Even on the rare occasions that I do go out, I always wear a mask. John was fully vaccinated and we were even discussing scheduling him for a booster. I'm feeling much better now than I have since I first became ill. At this point, John and I are just still feeling a lack of energy.

#Covid #Covid-19

[saccharine-cursebreaker]

How can someone be so reckless?

TW: Talking about COVID under the cut, and a fair amount of cursing because I am stressed, tired, and terrified.

I have tried my best to be so goddamn careful, for two fucking years. I quarantine, I wear two layered cloth masks until I could get my hands on a surgical, and added that in too. I stay 6ft apart in public. I got vaccinated.

For the last 4-6 years I've lived in a gray area of 'you get sick really easily but because you were too poor to go to the doctor most of the time we don't have documentation so you're not immunocompromised you should just be careful.' I've made it very clear to the people in my immediate, day to day life that I'm not fucking around. If they aren't feeling well, I will be sad but they should not come anywhere near me. Strep always sends me to the drs. Flu usually sends me to urgent care or the ER if I think I can afford it.

Someone in my immediate life asked if we could pick up groceries together. I had some miscellaneous things I needed to pick up, so I said sure. We carpooled together on Sunday morning.

I get a text from them Monday evening that they aren't feeling well, are having breathing problems. They're going to schedule a covid test just in case. Terrifying, but no hard feelings. They must have been feeling fine Saturday, or so I thought.

An hour later and a friend of a friend managed to get their hands on an at home test for them in the interim. It came back positive. This morning (Tuesday), during a break from work (I WFH), I open my TikTok. The first video that pops up? A video of this person, filmed and posted this morning. Talking about "COVID day two" and "I hadn't been feeling well for the last few days." What in the actual goddamn fuck.

I trusted this person, they were vaccinated, said that they had been masking everywhere, they didn't mention not feeling well. Then I have to find out through social media that they actually weren't feeling well, and chose to make a risky decision anyway? So they made a risky decision, didn't tell me so I couldn't make an informed decision, and I am now quarantining and left with the consequences of their actions. How in the hell is this fair? I don't have a support system here. I live 3 hours from the closest family member. The only close friend I trust in a crisis lives 19 hours away. I had to cancel a weekend gig that would have added $300 to my moving funds because I couldn't live with myself if I knowingly went out and potentially exposed people. My aunts say that I should be okay, I haven't gotten my booster yet but I still have two vaccines in me. That I'm young. That since we were only in the car for 45 minutes, unmasked total that I might only have a small viral load. That doesn't change the fact that I am terrified because someone I trusted didn't have the decency to let me make an informed decision.

If you all could just cross your fingers, maybe send me a funny meme or something you saw so far this week and think is cool, I'd appreciate it. I'm hunkered down and just trying to stay distracted and calm down a bit.

#tw covid #covid mention #coronavirus #pandemic #why are people so horrible? #i have depression. ptsd. adhd. and my doctor suspects POTS #i cannot cope and manage all of that plus active covid PLUS anything it may or may not leave behind in my system #anxiety vent #angry vent #vent #covid-19

[matthillica]

Pandemic - Day 7 (Weds 3/18/20)

Not even sure where to begin this, suffice to say I've had a nagging feeling over the last few days that I need to document this as we all hurtle toward the unknown.

I haven't touched this blog in almost exactly 10 years, which is crazy to think about. Crazy that something I used to spend so much time agonizing over and pouring thought into has become antiquated and obsolete... only to become the one outlet that makes sense during this crazy time.

Yesterday I set up the Kinect on my Xbox, another obsolete piece of technology. Because I'm a nerd and always have to have the newest, hottest, flamingest shit, I got one of the first Xbox Ones to come out, which came with the second generation of Kinect sensor... you know, the one Microsoft tried to shove down all our throats relentlessly. Anyway, we basically used it as a voice operated remote to browse Netflix. "Xbox, pause" "Xbox, play" "Xbox, rewind"... you know, shit Americans are known for. Anyway, Microsoft eventually gave up the ghost and phased the Kinect out. Mine's been sitting on a shelf gathering dust for at least 2 years.

Now, it's a way (if I can get the damn thing working again) for us to use an outdated Skype app so that we can talk to Grandma on a daily basis. My daughter, Caroline is almost 2 (yes! I have a daughter now and have been married to my wife since September 2015). Grandma is in Kansas, set to move to be with us in Atlanta as soon as her house sells. She was supposed to come visit us 3/27, but it's looking like that won't happen now. I told her if she was able to get in the car TODAY and make the 14 hour drive, stopping only for gas and to sleep in her car, that she's welcome to come stay with us and ride this thing out. Tearfully, she told me she needed to stay in case someone wants to come look at the house.

Honestly, it's going to be safer for her there anyway. McPherson has around 15,000 people. Meanwhile Atlanta is set to blow with this virus and cases have started to double overnight. It's hard to know how many there really are simply because there's a shortage of testing. Personally, I think by this weekend, our healthcare system is going to be in the grips of the worst crisis it's ever seen.

I should also mention that my wife has some autoimmune health issues that are pretty unique. She suffers from Schmidt's Syndrome which is a combination of Addison's Disease and Hypothyroidism. It's something that can be managed with a daily regimen of drugs, but is a serious condition that can be exacerbated by illness. The story of her diagnosis and the things we went through to get to it could fill a book at this point. I have taken more trips to the ER in the last 5 years than I care to mention and many of them have been triggered by illness, whether that's a common flu or something given to my wife by Caroline from her daycare or mastitis... even the slightest thing can send her into adrenal crisis, which immediately requires a trip to the ER.

So... as you can probably guess... I'm pretty fuckin nervous about all this. Luckily, I have been quietly prepping and watching this story develop, so we have plenty of food, water, and meds to get us through the next 60-90 days. My concern is that if my wife catches this, which she probably will, we may need a trip to the ER... and that's the last place on earth I want to be right now or for the forseeable future.

I should ALSO also mention... my wife is 13 weeks pregnant with our second child. This means that now, not only do we get to navigate our way through a pandemic AND Schmidt's... but we also have to deal with morning sickness and fatigue, all the while playing the game of "Is this symptom just pregnancy OR is it your Schmidt's OR is it Covid?"

Anyway, the last few days have been rough and we're only at the beginning of this thing. My wife can barely stand due to fatigue. She basically moves from one flat position to the next... shuffling quickly from our bed to a sofa or from the sofa to the kitchen and back as quickly as she can. It's slightly horrifying. I've been trying to cram fluids and food down as much as possible, but it's hard when someone doesn't feel well. I got her a bottle that lights up every 30 min to remind her to drink, but that's not really helped much at all. I grabbed protein shakes from the store in an effort to find something high calorie with vitamins, etc. that she can drink easily. I basically had to hold a gun to her head to make her drink it this morning. I'm equal parts husband and taskmaster. It sucks.

Last night she said she felt the fatigue was getting worse and that it wasn't due to pregnancy. I can connect with her doctors via an app that allows me to send them messages... Laura was too tired last night to do this herself, so I fired off an email to both her endocrinologist and OBGYN. No response.

In preparation for a doctor visit today, which we assumed we'd be able to schedule, we drove to Laura's folks' house so they can watch Caroline while we go to the doc. We tried calling the docs on the way over, but it seems they're already trying to stem the flow of patients. It's worrisome when you're living with someone who has a life-threatening illness to see the system strained already when the worse is yet to come.

Anyway, not long after we got to my in-laws' house, Dr. Patel (endocrinologist) called me directly. After discussing Laura's symptoms with him for about 10 minutes, he said we need to go to the ER so that she can be given fluids via IV. I said, yeah... no I don't want to go there AT ALL. But he said really, we need to go as this is the only way to deliver IV fluids. I thanked him for calling us and he said he'd call back tomorrow to check in.

So... what to do? Do we drive into what we KNOW is a situation that will expose us both to Covid so that she can be given IV fluids and told she needs to eat more, which I can almost guarantee you is what will happen since we've been through this a dozen times before? OR do we do what we can at home, try to see if we can force fluids and food to make her feel better, then reevaluate tomorrow when, in all likelihood, the situation will be even worse at the ERs? Neither is a fantastic choice.

For now, we've decided to stick it out here at her parents and see if we can force the fluids and food for today. At the very least, tomorrow when we wake up if she is still not feeling better, we'll be able to say that we know she's not dehydrated and we know she's had enough food. I know it will be worse at the ER tomorrow, but if going there is a Covid sentence either way, seems like it would be smarter to delay that option as long as possible.

So that's the situation right now. We're all "working from home" at this point. I have a desk set up at home and have grabbed my monitors, so with the exception of the folding table set up in Caroline's playroom, it's just like my normal office setting, basically. It's interesting attending meetings and trying to handle the business-as-usual functions of our jobs while the world around us starts to crack and crumble. I can't help but wonder how long this routine will go on before each one of us is just in 100% survival mode, unable to track or even care about projects that have lost their meaning in the context of this incredible, unbelievable, worldwide crisis.

It's crazy to think that everyone... EVERYONE on EARTH... is living out their own versions of this story, complete with difficult situations to navigate and impossible choices to make. My own drama is consuming all of my mental real estate right now, so my heart is with everyone who is dealing with their own all-consuming drama as well.

Be good to each other over the coming days and weeks. Stay strong and as positive as possible. Take care and stay safe.

-Matt

[servingliesarchived]

y’all, life has been a lot.

#𝐎𝐔𝐓 𝐎𝐅 𝐂𝐇𝐀𝐑𝐀𝐂𝐓𝐄𝐑 ; nerd central. #work is killing me #i've been too busy #also my coworker came to work sick and apparently his covid test was positive so :)))))))) #covid // #covid tw #in other news i've remade ron i'm just waiting for the right moment to post the link #since my weekend plans cleared out imma have time lol