ER(E) with a disability

[7Wannabe5]

There is an option towards the end of the marketplace application that asks if they can use your tax records to better match your income. You can reject it for up to 5 years at a time if I remember correctly. Maybe you authorized it at one point and that is how they are figuring it out?

Bingo! I was also somehow auto-pilot enrolled in the Medicaid program without being made aware of it, so I had both federal plan I was paying for and free state plan for around 1.5 years.

[recal]

Thanks all for more considerations about the health insurance. I'll ask around and keep looking into it, and I'll let you all know how it shakes out.

[recal]

Oh no... I've fallen to getting too used to the plump corporate lifestyle.

My last day of labor was December 22nd. I haven't resigned yet, as before I decided to resign, I was trying to take a month off to deal with these health issues. But, I'll be putting a meeting on my manager's calendar a week or two from now. I don't expect I'll be told to work another two weeks.

So far, I've been severely depressed. I don't think it's from a lack of labor per se. As I've said before, and is a motto in my life, I have to experience pain in order to work. That's never been more true than in 2023.

But, that doesn't mean coming off of that pain is easy. I flinch when I have to take my medicine (the only way I'm able to get out of bed rest for the day). Nothing feels worth that flinch, if that makes sense. I've been so caught up in saying no to non-laborious commitments for so long that the inherent curiosity died within me.

Well, I hope it's sleeping, not dead. Even now, two weeks later, I awaken thinking of asking for an unpaid sabbatical, some guarantee of labor to return to.

I've completely lost the plot here. 2022 me would kill for a year of youth to do all the things I wanted to do. I just flinch at the idea of doing those things now. I can afford to take a year off! I'm not even committing to a year off, I'm only committing to 6 months off. After that, I need to decide how much labor I'm willing to commit to, and go from there.

I'm off of the medicine in the lead up to a new doctor. It's hard to extrapolate how much of this is a trauma response to my current prescription (both the day-to-day QoL and the fact that I had to go on disability leave for a very painful steroidal 3 months). If I had quit when I first wanted to instead of listening to the practicality of persisting until I felt broken, maybe I'd feel different now. Maybe I'd feel better.

I never wanted to be this way. I never knew I could be so corporate complacent. I consider myself a scrappy person who lives outside the normal milestones. I tricked corporate into letting me in, I didn't know corporate tricked me into becoming one of them. Now, I don't know how to get out.

It's very possible that this is just a very acute response to the wait for my new prescription. I'll get the new medicine, everything will feel different, I'll have a manic response, and be a totally different person on the other end. It's happened before and I hope it happens again.

Lastly, a few practical updates:

- The budget is much easier to stick to without a job. The only significant spending is going to be on the doctor days, because I am flying and Ubering and eating in a different city.
- I am going to sign up to Covered CA the day I put in my resignation. COBRA should work in hindsight if I need it. I'll be putting my income as $22k. Coverage will begin February 1st.
- Cycling is cheaper than public transit. It's so much easier to save money if you're able-bodied.

[delay]

Thanks for your journal!

Oh no... I've fallen to getting too used to the plump corporate lifestyle.

Surely life as a salaried worker is much more convenient than working for hourly wages! I'm always amazed at how nurses, construction workers and bus drivers are treated. Some are told their hours only a few days ahead and have to arrange their life around that constant uncertainty. Compared to that, office life doesn't look bad.

It's very possible that this is just a very acute response to the wait for my new prescription. I'll get the new medicine, everything will feel different, I'll have a manic response, and be a totally different person on the other end. It's happened before and I hope it happens again.

That's something I hear often. Some people are on their fifth type of medicine, others are on ten concurrent medicines. It seems that the solution to problems with medicines is yet another medicine.

May the path you choose work well for you.

[recal]

My "Finding Freedom To"

I read both Slevin's and AnalyticalEngine's journals yesterday in trying to find inspiration to get out of my slump, and both spoke of their "Finding Freedom To." I've never had trouble with a "Finding Freedom To" before now. I only lost it because I've spent the past 15 months or so prioritizing work with a very limited sphere of energy. It is crazy how quickly that muscle has disappeared into a nub, but I am hopeful that it will grow back faster.

I've kept a journal of my relationship to my disability since September 2021, which is a month after things started progressing again (as a reminder, I have a degenerative disease). I am going to read through it and quote the important relevant bits now. This will be long and aimless and 99% for me... I'll bold the important bits.

My Finding Freedom From: Working despite it being painful. I don't want to experience pain to be able to feed myself in the world.

Journal Quotes of Relevance:

September 6th, 2021 -- "I wish I had more chains, more excuses. I'm chained by the todo list that will never leave me, and it's so private and quiet and meaningless, yet it means more to me than my job, my health. ... There is so much good art in the world, and I will die without experiencing it all."

October 2nd, 2021 -- "We need time to think, to stare out windows, to pursue obsession. If something doesn't feel like your soul is being branded, it doesn't matter."

Manifesto, or Things I Know To Be Indubitably True

1) Media, and specifically cinema, is the lens with which I both relate to the world and find joy. My life's purpose is the pursuit of more (and the pursuit of a deeper connection to) this.
2) A little bit of vigorous exercise every day goes a long way.
3) My secondary, underlying life purpose is to leave as little of an impact on the world as possible.
4) Travel is high impact, low happiness. Avoid it at any cost.
5) Eat plain, unprocessed, but various food as much as possible.
6) Live in a small, well-lit apartment in a walkable area for the optimum health and happiness.
7) Do not be afraid to spend money, but do be afraid to make transactions. The opposite may be more clear -- Be afraid to make transactions, but don't look at the cost when you do.
8) People who spend more money than you are not happier than you.
9) The pursuit of being more tolerable and likable will not lead to [platonic] love, it will only lead to loneliness.
10) Independence is the greatest luxury.
11) It is fine and normal to wish to free yourself from work. Do it.
12) Asexuality and aromanticism doesn't mean you're incapable of both giving and receiving [platonic] love.
13) You will never be normal. Do not pursue it like it is an ideal.
14) Any pursuit of a "public life" will leave you feeling empty and misunderstood.Low impact is to die without a trace.
15) Urban, walkable, dense, and interesting is where I should enjoy living. Live somewhere interesting enough that you never feel like you ant to take a break (travel) from it.
16) Keep Iron, Vitamin D, and Omega-3 in check.

No Date -- "I want to pursue active, creative, and intellectual hobbies. I want to simply be rather than always feel like I'm always running on a treadmill pursuing zero [on my to-read or to-watch list]. I want to consume media actively without every notification feeling like the devil incarnate."

"Who do I want to be?
* Quieter. I feel so overstimulated, attached at the hip to the neverending list of things to do -- to consume. I want to feel comfortable just lying in bed and having the radio or music on. No phone, no texting, just existing without constantly looking at it.
* Sporty. Runner, cycling, tennis player, martial artist, and girl who can do a pull up.
* Anti-Consumerist. Buy little, eat out with friends, feel a leftover energy.
* Movies. Always and forever, but focused."

Sadly, the entries relevant to "finding freedom to" stop there. This was my last entry before my prescription changed last year, and ever since, I haven't said once that movies are the reason I'm alive, or that sports are cool, or done anything off-beat and interesting.

I'm not sure if I'm trying to remember the old me or forge a brave new path. If it's the old me, the list of passions are endless -- movies, an endless to-read list, kayaking, cycling, volunteering, an active social life, and most importantly, an inherent curiosity that has me constantly trying new things and getting into wacky commitments. I hear all that, but it sounds so foreign.

If it's the new me, I have to wait for the new prescription to figure things out. I thought I'd have more to say at the bottom of this, maybe a plea for help and a plan to start working that muscle again, but the drop-off the second I got the new prescription is stark and drastic. Those entries became hard to stomach and I began to skim because I'm trying not to reinforce my current personality into an even deeper groove. What happened to the person with that self-assured manifesto?

I can actually tell you what happened. My hobbies and passions changed from the stuff I race to after the work and chores are done to ways to pass time while waiting for the inevitable medical update. I'm not sure I can artificially pretend movies are more important to me than my medical updates. I'm just looking at the clock, hoping the movie is longer, and I wake up to my next appointment day or next realization that the prescription is failing me again. It changes the entire relationship with the passions. Work becomes the best way to wait, because the company is asking for all the time and energy you can muster.

Agh... Well, this was a fruitless exercise. I don't think there's anything I can do but wait then... I'll let you all know when I'm done waiting, then. Something will inevitably change once my health stabilizes.

[Lemur]

@recal

Can empathize and hope your health recovers with the new medicine. Chronic conditions have a way of robbing you of everything you want to do...and these aspirations sort of sit on the backburner waiting for better days. It simply beats you down overtime. And recovery is just never linear either so its hard to plan in the long-term but to simply take life day to day. I too find that work can serve as useful distraction - in this case not necessarily a bad thing.

[recal]

I just got delivered another heartbreak that things are going to take longer than I hoped. I thought I would be back to starting to put my life back together in March, but alas, it doesn't seem to be the case. I have no particular estimate now. But, a few mildly interesting updates occurred in the meantime now that it's officially been 2 months since I stopped working.

First of all, I tried to resign from my job, and they instead offered me leave. I'm very unclear why. My performance for last year was below average. I don't have FMLA coverage for more than 1 week from the disability leave I took last year lasting basically that entire 3 months.

Not only did they offer me leave, my managers seemed relieved when we were all on my resignation call and I was like, "Oh sure, I'll take leave if they offer it." There was an immediate mood shift. I don't understand. They should want me to resign. Don't look a gift horse in the mouth, I guess. I get basically free medical coverage and I just pay $6 a month to keep my dental. If they do layoffs, I get severance, but that's unlikely, honestly. If they don't, then assuming I'm better on time, I get to go back to a job that's not great, but okay. If they put me on a new team, I may even remain at the company. If I have to resign at the end of the 6 months, I still got that free medical insurance for 6 months.

This is not how I was taught Corporate America works. In general, my job has gotten very Office Space over the past year or two, and this is the final Office Space straw. It feels like I pulled a heist. I really do feel like the scene when the guy walks into the meeting and says a bunch of crap and gets promoted. Again, I'm grateful, but I also feel like I want a clean break. I'm not me unless I'm scrambling to survive and making big changes. This isn't a medical break like my disability leave last year. This is a medical-induced life reset I'm trying to embark upon.

That's the big news. I wonder if anyone has any insights on that... The theories I've heard from my friends is that if the company is in an unofficial hiring freeze (it is for US), the executives would love to fire me, but they don't know I exist. Like, my managers would have to appeal to the execs to replace me which is a bigger loss than the 6 months, but they can approve this leave under the radar of the execs.

Second, let's talk a bit about spending. I didn't believe the general common knowledge that people spend less when they're not working, but it's true. I'm not counting the thousands in medical bills and flights on very short notice to my appointments in my budget, to clarify.

In January, I spent $600 or so outside of my rent. I didn't have any leftover groceries, I went out to eat, I bought video games, I went to a movie, and I bought even more than my usual in the category I define as "toiletries," which is kind of a code word for OTC medical stuff. I'm still using train money from when I was employed and that was deducted from my salary, but even then, I don't take the train every day anymore, it just doesn't make sense to. I'm sitting at home basically daily, obviously because the medical stuff, but if I wasn't, I still don't think the spending would change that much. I'd probably sign up for a couple of music lessons and some kind of fitness thing (currently still most interested in martial arts and tennis) which would cost a couple hundred dollars a month, but then I'd be at budget ($850 outside of rent). I don't mind going above my budget if it's for thoughtful lifestyle changes like that either, maybe even adding a new category in the budget for Cultivation.

Overall, although I'm happy about this, it might finally be time for me to admit inflation has affected me, for the first time since I wrote down this budget a year ago. Energy bills keep going up... I changed my plan which should save enough money to keep my current budget. Fingers crossed. The "toiletries" category is almost confirmed to be going up. That's not inflation, that's just the realities of my new medical situation. I don't want to take money out of my other categories just to keep the clean $30k a year budget, and I obviously deserve and can afford the best medical stuff on the planet.

Third, let's talk about the finding freedom to. This reply from Slevin in his journal really came at the right time for me.

Good. I'm glad a lot of people liked and got value from the post. Its not perfect though; sometimes life forces us into places where there is nothing to do...

Life sucks sometimes. My favorite advice in these times is from Ajahn Brahm (physicist turned buddhist monk), which is to sit down and have a cup of tea. When there is nothing to do, do nothing. Worst case, if things don't improve, you can still enjoy the tea .

I realized I felt pressured by both myself and my friends to make this time some kind of grand adventure. I think it's that corporate slavery point of view: How often will I have 6 months off of work? I really have to live it up! It's the same kind of wasteful and overzealous attitude of people who travel to a destination across the world for 6 days so they can be back for the Monday meeting, and it's just running from photo-worthy spot to photo-worthy spot. I don't have to hold myself to that kind of living it up standard.

I transitioned to thinking of this time like I'm a patient and giving myself that grace. That's worked wonders. It still does mean that as I woke up today and wanted to write to you all, I was appalled that it's been 2 months because I've done so little with that time. But, it's fine. I went from not eating to eating frozen food 3x a day to eating my own cooking 3x a day. I went from no exercise to doing a small bodyweight routine most days. I went from never cleaning the apartment to spending 5 minutes a day most days cleaning. It's okay. I'm a patient. A big part of the transition to accepting I'm a patient is not making myself do things that I don't truly want to do. I don't have to put myself through pain anymore. Just letting myself say no, the pain is not worth the pleasure. It's not worth it. It's okay to do nothing rather than something that hurts you. (I'd like to clarify: Exercise-type pain, good. I think I've kind of kid myself into thinking that for example, something I really can't do for medical reasons like reading a book after how much work takes away from me is exercise-type pain. It's not. It's medical pain. Stop! Don't do it!)

Hell, I have enough money now that I think I never have to do the exchange of work and pain again. I've sacrificed 6 years of my limited time with the best years of my degenerative disease. Within those 6 years, the threshold of "best" has already gone down. Medical technology has improved, and god knows, I've now spent thousands of dollars on these medical advances to compensate for my body continuing to degrade. And that's great and thank god and there's still potential for this doctor I'm seeing right now to give me the best health I've had in a decade. It's possible. But, it's going to get worse.

With these 6 years, I've also made $500,000. That's 80% of the way to my most frugal financial independence option, 33% of the way to my proper option, and 25% of the way to my luxury option. I know this is a frugal forum where a ton of people have this kind of money and more, but.. Let's be real. That's a lot of money. It would take 12 years to run out if I never made a dime again.

I want something to come BEFORE work now. I want something I prioritize above work now. I think that can still fit with a full-time job, maybe, if not, freelancing. This isn't necessarily what I want, but some examples of what I mean: my friend was in a band and had practice 3x a week and hauled their drums on public transit, another friend does competitive sports as an adult aka a total time and money sink, there's a bunch of cycling groups in my area that do these long cycling runs in the mornings, volunteering as I've said before and did put before work -- I volunteered twice a week and once was on a weekday, etc.. This doesn't have to be during work hours, but something that I show up to with even more commitment than work. It doesn't even have to be a group thing, although that would be nice. Like, I have an indie theater really close to my place... I never go... Reading 50 books a year would be this kind of commitment. I want one thing that's really important to me that doesn't work around work. Work works around it.

I don't know what that is yet. I have no idea. As I've said before, I'll really only know what my limits are once I'm out of medical limbo. I'm not pushing myself to try new or old things yet. However, I'm really starting to struggle with this "living two-three weeks at a time" between appointments. I've been using video games as these kinds of projects that take that length of time to complete. But, I don't know, I'm getting pretty worn out on video games. I guess next I'll try TV? But, I don't really like that either. Ideas are absolutely welcome. I'm particularly curious if anyone has any ideas for some kind of fitness thing that could fit into two weeks that wouldn't be injury-inducing considering that I am basically hospital-grade unfit, I'm in bedrest constantly.

That's about it. Living 2 weeks at a time, but, I have good medical insurance. It's a high deductible plan, though, so I'm actually probably not saving any money as compared to the ACA plans. It's fine.

[Lemur]

For the job - you’re probably performing better than you think you’re despite what any performance review states. If you’re the workhorse / task-master type then you’re valuable. Layoffs are reserved for middle-managers.

For the fitness idea…try long walks with podcasts, documentaries, music, or even just silence and let your mind wander. Game it using pedometer step counts.

[recal]

For the job - you’re probably performing better than you think you’re despite what any performance review states. If you’re the workhorse / task-master type then you’re valuable. Layoffs are reserved for middle-managers.

For the fitness idea…try long walks with podcasts, documentaries, music, or even just silence and let your mind wander. Game it using pedometer step counts.

You're probably right... Below average doesn't necessarily mean as much of a headache as I assume. Especially again, compared to hiring.

The long walks idea is really good. Thanks! I can try to walk the length of a particularly long podcast (2-3 hours) a day.

[Scott 2]

How did you decide the work performance is below average?

[recal]

How did you decide the work performance is below average?

There's a yearly performance review at my work, and I got the results in early January. It's rated out of 5, but really, no one gets a 5. 3 is "good" and average, and I got a 2.5 which is "performing below expectations."

[Scott 2]

Do you know how the rankings are distributed? IE - ranked with coworkers, what percentile you are in?

Sometimes employers force a bell distribution of the reviews, meaning it's literally impossible to have a "good" team. Valued members get a score nobody believes, because that is what the system requires. It primarily exists to "fairly" distribute the annual raise budget.

The leave suggests management likes and values your contributions.

[recal]

Yeah, I'm not sure. I've always gotten a 3.5 or a 4... My work friends have also gotten 3s, generally.

I think, honestly, I'm riding on that past performance. I think management does like me from being above average for my first 4 years at the company. Replacing someone with that much internal knowledge and an unofficial US hiring freeze would be difficult, I guess. Reason suggests if I fixed my health issues, I would go back to being above average.

[Scott 2]

Replacing someone with that much internal knowledge

This is another and durable form of contribution. Holder of institutional knowledge. It's possible your role could shift and remain valued, even with the health issues.

[shaz]

Fitness idea: yoga. I know a number of people who say yoga helps them manage pain.

Work: I agree with @Scott 2 and @Lemur that you are probably contributing more than you realize. Also, your managers are human and may be sympathetic to your situation.

[recal]

The Three-Month Update, or I Live In Such Luxury:

This is the longest I've been "unemployed" with a normal lifestyle. I have been binge-reading stuff here and on blogs the past few days, and hit a bit of an epiphany this morning.

It's been 3 months like this. I've been under my budget every single month. Granted, I haven't been going out much, I'm I'm not just a bit under budget, I'm hundreds of dollars under budget, so I can definitely go out more, eat more, and be more active. The budget I set ($2,500 a month) is the top of my spending ability as a retired person as of 2023 inflation levels. I don't need to pad that out any further for my month-to-month stuff.

With that in mind, that means my spending is: $30,000 a year + $2,000 medical care + $3,000 misc.

Misc. is for either a situation I'm in right now where I have experimental treatments or some kind of travel or some kind of family thing. I have learned I won't do both a bunch of luxury purchases AND a bunch of medical stuff in one year, so I think it's good to have a yearly budget separate from the monthly budget, but kind of all-inclusive. So, that adds up to the high-end of my spending, aka flex built in, to being $35,000 a year.

That means my 4% retirement number is $900k and my 3% retirement number is $1.15m. I want to add $100,000 for any kind of major surgery or something -- just let me be a little bit conservative here, so $1m and $1.25m. In no circumstances do I want to wait for $2m to retire. $1.5m, my earlier "proper number," is now the luxury/fat number.

But remember, this is the *upper limit*. Let's switch some variables around:

1. I live in a cheaper apartment in the Bay Area (right now my apartment is highly luxurious, on the top floor, great lighting, really good transit access because my job is in office): $20,000 rent a year -> $15,000 rent a year. That's now $1.1m (all numbers will now include the $100k buffer/3% rule built in).

2. I move to a cheaper city, like Chicago. According to Bankrate, Chicago costs 20% less than where I live right now. $35,000 -> $29,000. $1.05m to retire.

3. I move to the cheapest great city in my realm of comfort, Montreal. According to Numbeo, Montreal is 40% cheaper than where I live right now. That's $850,000.

Right now, in my accounts: I have $570k. The gap between this net worth to the "living with roommates" semi-retirement here in the Bay is basically accomplished. The gap between here and permanently moving to Montreal would get solved in between now and immigrating there via a skilled workers visa into a permanent residency, blah blah. I haven't looked into healthcare for Chicago and Montreal because I'm not too serious about this, I'm just putting it on the table, I'm sure I'll find my way around it. Specifically for my condition, for Chicago I expect I'd have to fly to NYC for the best care, and for Montreal I expect I'd have to take a train to Toronto.

The more time I spend with you all, the more my numbers trickle down. I *really* want to re-read ERE, the book soon because when I first read it, I was a teenager who thought I'd grow up to have a much more dirtbagging lifestyle because I was incapable of holding down school, so I thought jobs would be the same. Little did I know I'd become a corporate fat cat and accumulate a ridiculous amount of money by my 27th birthday.

I'm so grateful and blessed to be in the situation that I am. As you would expect with living in a notoriously expensive area, I spend the least of all my friends and everyone asks me to imagine spending more. I can't. Going to Michelin star restaurants is within my budget. I went on a vacation last year. I fly from SF to LA on a moment's notice for my grandmother's funeral and that works within my budget. I take Ubers. I have an unnecessary amount of streaming service subscriptions. I live in a beautiful apartment. I don't spend a lot of time looking for deals when I want something. If I want it, I get it. I just got jewelry for fun, that's how luxurious my lifestyle is.

This is the peak of luxury for me. It's been 6 years since I left home and became an adult, and I've spent less and less every year as my skills have increased. I don't eat out as much. I don't need to wine and dine new potential friends so much. I have so much stuff now that just hasn't broken in years. Eg. Instant Pot, when I bought it, it was expensive, now I've had it for 4-5 years. I have a perfectly functional personal laptop I got for free that is now 10 years old. Once you buy it, you have it.

So yeah, that's my latest financial update. Things just changed, you know. Now, retiring in 5 years feels substantially different 8 years. Every year counts now. Every year is about $100k increase in the net worth. With one more year of working, I will reach the point where there's some option to not have to work again. Every $100k/1 year after that is another step up the ladder of options. It caps out with 8 more years.

Medically, how am I doing? We're going somewhere, we're making progress, but it's not a slam dunk. I'm not confident that I won't reject this medicine yet like what happened last time. I have to keep trying for 3 months. I'm back to sort of "emulating" work and trying to aggravate the amount of strain I have in a day, and then if I keep up with this, by mid-late June I'll know whether or not my body is starting to reject it or not. The problem is... I'm already kind of aggravated. I'm not sure yet if it's the old symptoms or if it's new symptoms, but, yeah, my body is definitely not 100% on board. Or even 80%. This is harder for me to enunciate right now, I just wanted to give my financial update.

The point is, when I started this journal, I thought I needed $2m to retire. That was my sure number. Now, I think it's $1.25m, with all the same security padding I feel when I confidently stated $2m before. I lacked the confidence and the levers to cut that number, which is now almost half, while my net worth has basically doubled. This is through further facing my disability, and realizing I'm not as helpless as I think I am, reducing my spending by about $6k a year, and getting a more realistic idea of both the American healthcare system and my own health needs (eg. the surgery I expected I'd have to have every few years is actually not administered twice except in very rare exceptions, there's always a possibility for another surgery in 15-20 years, but that's a completely different situation than what I was planning for).