ER(E) with a disability

[ertyu]

That sucks to hear. Do you rent or do you own? If you own, renting out rooms might be good comparatively passive income. If you rent, you might see about buying a place you can house-hack, but I don't know what would be affordable near where medical services are accessible. If these services can be had elsewhere for cheaper, 360k usd isn't a bad amount to live on in asia or latin america. Good luck

[mathiverse]

I'm sorry to hear your situation has gotten challenging and your condition has worsened.

What limitations do you have when your condition worsens?

Could you tutor math or computer science or another subject you are familiar with? Are you a programmer? Could you do short term freelance and contracting projects that pay by the project (so you can set your own hours according to when you're healthy enough to work)? Can you give mock software engineering interviews (for example on interviewing.io)? Just a few ideas that are adjacent to your work as a software developer, but I don't know what kind of limitations you have, so perhaps these ideas aren't useful.

ETA: Did you have short term or long term disability insurance from your job? Can you take advantage of either given your situation? Can you use one of those to take a paid medical leave for as long as possible before resigning?

Also once you no longer have income, maybe you can use some of that time to look for discounts/grants/help on medical expenses and also to negotiate with your medical providers for cheaper care to the extent you can since you'll be a low income person at that point?

[Ego]

My health has all taken a hit far earlier than expected. I will probably have to resign from my job with few job prospects....

I won't qualify for any kind of disability.

I am so sorry to hear about the rapid decline.

I always believed that an employer must offer a reasonable accommodation in a situation like this. Is there no accommodation that would work? If not, then you qualify for disability / retraining, right? Is that not how it works?

Someone I know has the most extreme version of your disability. She is in a phd program, fully paid with housing allowance, medical insurance, a stipend and specialized support from the famous charitable institute.

I can't imagine how hard that transition would be. Perhaps retraining like that would buy you time to learn how to use the many tools available to someone with your disability. Have you already reached out to the institute? What does your doctor say about disability?

Sorry for so many questions. Many years ago, right after my diagnosis, I ran through what-if scenarios and that's what I came up with for the most extreme outcome.

[recal]

A lot has happened in the past 24 hours but I'm also in a lot of pain right now, so I'd like to give a clear update while still being succinct.

I was betting on a new treatment these past few recaps. It was a complete disaster. It doesn't work, but an advantage is it doesn't cause permanent damage.

I am now unable to do any kind of cognitive work for more than 30 minutes a day (including writing messages like this) without extreme pain and discomfort.

I don't believe that this is permanent and life long. There are new technologies all the time, and there's creative doctors. It's just that this means I probably have to stop working and change my profession to full-time patient until further notice.

What is until further notice? It could be 2 months, it could be 4 years. When I first got the disease, it took nearly 4 years. Then I was okay for 3 years, then I've been getting worse again for the past almost year and a half.

Realistically, I agree, I can't retire. I won't retire. But, I will likely have to use my savings. I have about 8 years of living plus medical, assuming nothing new happens.

My friends messaged me suggesting the same thing -- FMLA and SDI. I thought it was impossible but I messaged my doctor and she said okay. I'm going to start talking to HR about it then. But, SDI means I'd start taking it now (soon) and the paycut involved now rather than engineering my firing by stopping doing work well.

Honestly, I like my job and my fervent desire is for a mild miracle to happen and for me to come back healthy and happy within 3 months.

Which... isn't impossible. We found the failure reason for this treatment is a new subdiagnosis. There is a new technology that can solve for this subdiagnosis. I booked an appointment this morning and literally had to book a $300 flight for next week to get the process started. I'll be flying back and forth for the next couple of months until we get a success or failure from this machine. Due to my frequency of treatment, I may have to pay entirely out of pocket as well. But if it works it'd be so worth it.

I believe that's it. Most importantly, this isn't permanent. I believe living a pain free life right now is most important. I saved all this money for retirement, but I think a mini retirement is good too?

Not to throw a wrench in at the last minute, but I was diagnosed with something quite scary during my last annual checkup, much scarier than my disability which is just chronic and painful. I've been referred to a specialist to see what's causing it, and all of this talk of controlling healthcare expenses and feeling comfortable leaving work may go immediately out of the picture depending on how this appointment goes. I won't go through with the SDI until I get confirmation it's not... hyper expensive.

Look, honestly, everything sucks. I haven't been this miserable and stressed since I was first losing everything to this disease.

I appreciate having a sounding board to help me plan for these just, unplannable things.

[antable]

I haven't commented before but I've been reading. So sorry this is happening. Hoping with you!

[recal]

Hey folks, here's a new year's update.

My situation isn't as dire as it was when I last posted in November. I've been doing the treatments, I've taken a lot of time off of work, and I've been balancing the budget throughout this.

How am I? Better. I'm on a new treatment which is extremely difficult to adjust to, but I think I'll be out the other end by mid-February. It's mentally a big adjustment. Physically, you expect a big adjustment, but the mental doesn't really have a guidebook. I've had some moderate mental breakdowns in the past few months and I suffered from severe exhaustion due to balancing work and the doctor's appointments and the treatments until the new year. My last regular appointment was January 9th. Now, it's just adjusting.

Apart from occasional flare-ups that last a couple of weeks (I'm currently in one and avoiding work, sorry if my post isn't as coherent as usual, I'm foggy), the new treatment is undoubtedly better. That's a big adjustment, too. You adjust your life around the constraints of your treatment, then you get a new and different treatment, and all of those assumptions you made are no longer accurate. So you have to slowly, slowly, question and re-try every assumption you previously made. From "Why do I cook the food that I cook?" to leisure "Hmm... TV? I kind of like this." to exercise. I won't go into too many details here because I don't really have a coherent answer to all of these yet.

During this time, I've been extremely grateful to have the luxuries that I've paid for. Living in a city with moderate weather year-round, where I can live without a car, and where I am in my own apartment has been frankly the only way to cope with this period. I can't fathom having to be presentable to people when these days I oddly find it more comforting to fall asleep in odd positions on my couch than using my bed. It's just more comfortable right now and I can't justify why. Living alone means I don't have to justify why.

I also bought a gift for myself this winter again, as it seems lifestyle creep keeps catching up to me. It's a $200 robo-vacuum. I like it and I can't deny it works well. It also fits within my budget. Is it decadent? Completely. Is it useful? Without a doubt.

Which, yes, the $2,500 a month budget has been humming along. Remember, this excludes medical, donations, and gifts. As it stands, I have $155 left to spend this month because January has front-loaded a couple of yearly bills. But, I'll tend to either have a net gain of $100-250 a month or a net loss of $100-250 a month. They even out.

I just did the math on my entire spending for 2022 and it comes out to $36,824.17. This includes about $3000 in donations, $1000 in gifts to family, and $4000 in medical spending. My estimate in this post (viewtopic.php?p=261554#p261554) was around the same at $37,213, sans any donations though. That means that in practice, my spending has decreased by $3500 this year. Since it was in place for about 1/3 of the year, I can say that sticking to the budget has decreased my spending by anywhere between $7,000 - 10,000 a year, effectively decreasing the amount I need to save by $300,000 or 3.5 working years.

Fundamentally, I'm still on track to retire by 35. The details around saving a couple thousand a year don't change that. The goal of this budget is to prevent the increases of a couple thousand a year. Inflation is a fact of life, but it's also a choice we make. Again, all of these kinds of high numbers make me feel kind of insecure to be a part of the ERE community, but I really do still identify as ERE rather than FIRE. Retire extremely early because money only has a few uses. It just so happens that my few uses are quite pricy...

That's about it. I won't go into more details on any of this unless asked, but I'm happy to start some discussions and get this thread going again. Coping mindset, what to do with free time during treatment, the tech market (I'm a Bay Area software engineer, as a reminder), anything goes.

[Scott 2]

Glad you've found a path forward and life is trending upwards.

[7Wannabe5]

So you have to slowly, slowly, question and re-try every assumption you previously made. From "Why do I cook the food that I cook?" to leisure "Hmm... TV? I kind of like this."

but I really do still identify as ERE rather than FIRE. Retire extremely early because money only has a few uses. It just so happens that my few uses are quite pricy...

I can definitely relate to these due to my recent "adventures" with late onset Crohn's Disease. For instance, I used to be a person who was happy to sleep in the back of a jeep and poop in the woods. Now, I am compelled to plan/price my lifestyle around fairly easy continuous access to a bathroom all my own.

Anyways, wishing you well with your journey!

[recal]

Hi folks,

It's been another 9 months. I don't have a large update to share here, just a few things...

My health became worse than it ever did after that last post. I've been returned from disability leave, but I'm not feigning confidence that this is going to last again. I'll be fine for a few months, but this winter will be a pretty extreme test to see if this is real or temporary.

With some miracle, I've kept my job, and although my income decreased due to disability leave, it looks like I'll be hitting 500k net worth by the end of this year. That's pretty dang huge, that's enough to be semi-retired, or permanently part-time. I like my job right now and would lament its loss before I reached a bigger milestone of money (a reminder that my ultimate goal assuming my spending remains is 1.5m). But, whenever this job or I get fed up of the other, I feel 500k is enough to confidently pursue some part-time work to just cover my expenses again.

Still living in luxury (I bought a washing machine!) and incredibly overwhelmed by health stuff. I have no grand philosophical updates to share. I don't think I'll ever reach a lower level of spending than I do now, it's simply too risky for my health to have to rely on myself... One thing I'd love to do, though, is move into an ADU in someone's yard. It'd have to be someone I knew, but yeah, that would be the only thing I can imagine changing the bottom line by a drastic amount. It all still has to be walking distance to public transit and urban living.

[ertyu]

Glad to hear from you dude, even if health's been going downhill. On a positive side, though, it seems like your efforts so far have put you in an excellent situation to continually take care of yourself and that's great. Good luck with sorting out an ADU, doesn't sound like a bad idea by half

[recal]

Today, I am supposed to be writing my self-review for this year in work. I am instead here devouring ERE and adjacent content. I think I did the exact same thing last year, if I'm remembering correctly.

Perhaps it's time for this journal to become active again, because I have decided to resign. I'll be putting in my resignation the day I come back from the Christmas holiday, and will be out of work by mid-January.

The entire time I've had this journal has been an extremely stressful time in my life. It's not the first time disability crippled my life outlook, but it was the first time that had happened while working a job and having a lifestyle that I'd like to maintain. I've gotten gray hairs for the first time in my life this year. Not just one, but several.

Work didn't work out as expected when I returned in August. I felt burned out. I actually don't think my work environment is all that uniquely good, particularly the new manager I got in April (I was basically completely out of it from April-August, so I didn't absorb anything about their management). Most importantly, my health didn't remain stable in the end. (Note: This isn't bad enough for disability leave again. I'm unhappy with my base level of functioning, but it's not a single aggravated symptom like earlier this year.)

But, I've saved a lot of money. I have $485k or so right now (I don't know exactly because Mint is dying, but this is an estimate that is within a 5k range, for sure. This will be 500k by the time I resign.) I'm on track to spend $35k this year (not counting donations), which is a personal inflation rate of 2.91% from last year. With a budget of $10k for health expenses, I should have 11 years of living expenses saved.

Although this is considered crazy to a lot of my peers, I believe I'm in a good situation to step back from work for the foreseeable future.

I'm actually not even getting as much of a break as they would understand. I leave in January, and I plan to go to a new doctor about a new treatment in February. I get 3 weeks or so to loaf around and just sleep without work looming in on on me.

Depending on how that goes, it will remain to be seen whether I get another job, freelance, or try and get a part-time job permanently. I think right now, I would prefer another full-time job. I think that in my field and with my rapidly worsening health, it's the most effective path to my retirement goals. Once I get the $1.5m total I want (8 more years of work at my same savings rate assuming I wasn't taking this break), I can breathe a sigh of relief that my health can't force me to do anything that brings me too much pain.

Right now, the plan is to take 6 months without worrying at all about making any money. I'll continue spending as normal with my budget, and never counting health expenses as part of my monthly budgeting. I will spend anything, go anywhere, talk to anyone for my health to return to a workable state, no matter the cost. If after 1 year, I still haven't gotten anywhere, and still feel like I'm in limbo, I'll start getting freelancing off the ground to try and cover my expenses.

Some things that may be of interest to people:

- California unemployment isn't worth getting fired for. It caps at $11k of total payouts. My future won't live or die on $11k, I'd rather leave my job with dignity.

- I will be trying to figure out how Covered California works soon. I'll have 1 month of income by the time I need to apply under a job loss. That would make my income for the year below poverty level. The estimate on the website is stating that I would qualify for Medi-Cal, which is extremely low-cost, but I believe alternative healthcare. I hope there is some way to instead qualify for the below-poverty-level Covered CA plans.

For reference, my initial estimation that Covered CA would charge me based on last year's tax forms has my estimated health expenses for the year at about $6,800. (This doesn't count dental and vision.)

If I change my income to $25,000 (which is more than I make in one month...obviously...), my estimate goes down to $1,300 a year. Obviously, this is a pretty significant change.

I'll let you all know how these two legalities go. I don't think I'll be doing anything else ERE-adjacent. I like my lifestyle which is at a Wheaton Level of 4.

As I've said before, I think the biggest risk with trying to do the higher levels is that this is the healthiest I will ever be. I have a degenerative disease. I should always be able to do the things I do now, but they will start taking more and more effort as the years pass by. I don't want to have any obligations of labor other than keeping my apartment clean and keeping myself fed. And, I think any machines that help me with that tend to be worth the money... The robot vacuum ($200) and the mini-washing machine ($250) have been very useful. My dishwasher from 3 years ago ($300) is still going strong. This year, there were several months I didn't get to my dishes in a sanitary amount of time. I ended up buying the hyper-expensive Cascade laundry pods, and it was worth it to avoid labor. I think I draw the line at hiring humans saving me labor (most of the time), but that's very expensive. But, machines... chemicals... frozen vegetables(! my favorite discovery of 2023), I'll take them all.

[Scott 2]

Good to see an update, that's a sizeable stash. Definitely buys time to figure things out.

A couple thoughts on resigning:

1. Any chance once you give notice, you're immediately terminated? Is that a reason to wait until after 1/1?

2. Any benefits to staying employed through 12/31? Vesting or annual bonus?

3. Could you use a Roth conversion to get 2024 income where you want it?

4. You'll need proof of a qualifying event to get your insurance outside of open enrollment. Make sure to get a letter confirming your last day of employment.

5. ACA plans use estimated income. Last I looked, the penalty for over estimating your income wasn't very significant. Especially in the first year. I'd probably try to land at 1.4x poverty, for maximum subsidies and cost sharing, while avoiding Medicaid.

6. When do compensation changes from performance reviews take effect? Would waiting until that date to give notice get you a little extra?

7. Does your employer offer an FSA? If so, could you elect max contribution for next year, then spend the whole year's worth in January, before you quit? At my employer, you'd only owe for the period you worked, so that was essentially free money.

8. How make work credits do you have with social security? What's the minimum needed to be eligible for your eventual benefit, or maybe even SSDI? It could be worth optimizing against if you're near 5 years of full time employment.

9. From what I hear, tech job market kinda stinks right now. It's too bad you can't catch a round of lay offs. $11k is still 4 months of living expenses.

[recal]

Good to see an update, that's a sizeable stash. Definitely buys time to figure things out.

A couple thoughts on resigning:

1. Any chance once you give notice, you're immediately terminated? Is that a reason to wait until after 1/1?

2. Any benefits to staying employed through 12/31? Vesting or annual bonus?

6. When do compensation changes from performance reviews take effect? Would waiting until that date to give notice get you a little extra?

Our Christmas vacation is a week off from the 24th through the 1st, so I'll be putting in my 2 weeks on January 2nd. Probably little chance of getting booted out the door on the spot, but it's always possible they recommend 1 week instead of a 2 week time or something. I have 3 weeks of vacation to be paid out as well, so my income should reach 5 weeks...ish. I just want to bank the fact that the last holiday is basically a free paycheck and have some income on record for this year in case this lasts longer than expected.

No annual bonus or vesting until March, and I have no plans to wait that long both for my sanity and because I expect a below-average performance review this year. Bonuses tend to be delivered exponentially to higher performers.

3. Could you use a Roth conversion to get 2024 income where you want it?

4. You'll need proof of a qualifying event to get your insurance outside of open enrollment. Make sure to get a letter confirming your last day of employment.

5. ACA plans use estimated income. Last I looked, the penalty for over estimating your income wasn't very significant. Especially in the first year. I'd probably try to land at 1.4x poverty, for maximum subsidies and cost sharing, while avoiding Medicaid.

I'm unfamiliar with the Roth conversion. Thank you! I'll look into it. I do hope that I get some income this year, so hopefully I can avoid it. I'll see what my options are, but I think you're right that if the application is pushing me into Medi-Cal, I can pretty responsibly overestimate my income for the year.

My plan is to get 6 months free and clear without any symptom aggravations that make working untenable before I feel comfortable looking for a full-time job again. Part of that will require emulating working, for the obvious reason that work tends to aggravate my symptoms. If I can emulate work without the pressure, then I can comfortably take it on again. It can't be that hard to pick up $15k or so of programming work in a whole year of doing this "work emulation."

EDIT: Reference for myself. For a single person in California, this is peak between $21-25000, with $21k income being $1 a month of premiums and $25k income being $18 a month. I should aim to get $22k of gross income next year, and write that on my application. I'm almost there! Just need to either do a Roth or freelancing situation for ~$5-10k.

7. Does your employer offer an FSA? If so, could you elect max contribution for next year, then spend the whole year's worth in January, before you quit? At my employer, you'd only owe for the period you worked, so that was essentially free money.

I have an HSA. I'm maximizing the amount I can contribute to the 401k and the HSA with that last paycheck.

8. How make work credits do you have with social security? What's the minimum needed to be eligible for your eventual benefit, or maybe even SSDI? It could be worth optimizing against if you're near 5 years of full time employment.

9. From what I hear, tech job market kinda stinks right now. It's too bad you can't catch a round of lay offs. $11k is still 4 months of living expenses.

I'm 26, so SSDI requires you to basically work only 3 years of the past 10. I've worked 5 in a row. I'm good if that happens. For retirement-related social security, I believe I have 7 years worth (assuming that 5ish weeks payout is enough in 2024, or that I'll freelance enough to cover that), and you need 10. I might even have enough from the small jobs I did when I was 18 to be at 8. I have no doubts that I'll work enough to cover that 3 year gap, though.

I know... We had a small round of layoffs last year, big reason why I won't believe any will come anytime soon. I think my historical performance was too good for that to affect me. I'm in a sweet spot level-wise where I'm not an overpaid 20-years tenure person or too junior to be useful.

Thanks for the gut checks here! I appreciate it.

[Scott 2]

Totally respect the choice to step away. It does sound like you have space to quiet quit.

I personally didn't find much opportunity for part time tech work. It was a race to the bottom with poor customers, stuff like word press sites and Shopify stores.

The exception seems to be getting an existing role converted to part time. You're too valuable to lose, so they concede. Otherwise, building a freelance business is a full time effort, IMO.

[recal]

I think where I've had luck is with startups -- especially since I have a local advantage of already living close to Silicon Valley. I had an opportunity to work on a car brand's website back when they were in a very big hiring stage and the website was basically an avenue for jobs. But, their engineers all did car stuff, it was a waste of time for them to work on getting their website working. Just recently, a friend interviewed for a small contract job to replace an early-stage startup's engineer with "just enough to keep the gas going" while they are on maternity leave. I also know some friends of friends who negotiated the contract-to-hire situation (common with very small startups) with "Never hire me, just keep me on as a fractional engineer."

I agree that I absolutely prefer just hoarding the cash from a full-time job, but it's... possible with a lot of the in-person types. It's something I would only be comfortable pursuing with the fact that I have this big stack of cash that will compound on its own if I leave it alone, because I don't expect to have a lot of money going back to savings with this. Just enough to cover expenses.

[delay]

Good luck with your resignation, it reads like you have this all planned out.

I expect a below-average performance review this year

As I grow older it seems to me performance reviews have nothing to do with performance. I've had bad reviews for good years and the other way around. So far my best fitting explanation is that the review is about how well you fit in the reviewing person's plan for the next year.

Focusing on a physical disability is an excellent idea! The body thrives when the mind tends to it. If I were in your situation, I'd try to find other people with the same disability, and see what I could learn from them. Different countries (France, Germany, Brazil) have moderately different ways to explain diseases, and different cultures (like India, China, Russia) have wildly different ways. Lots of things to learn and experience.

[Ego]

I'll have 1 month of income by the time I need to apply under a job loss. That would make my income for the year below poverty level. The estimate on the website is stating that I would qualify for Medi-Cal, which is extremely low-cost, but I believe alternative healthcare. I hope there is some way to instead qualify for the below-poverty-level Covered CA plans.

Question the assumption that medi-cal is inferior. You might try the reddit section for your disease to ask people's real-life experiences. Be sure to specify medicaid in California, as each state is very different. Another option is to ask the person who checks you in with the doctor you now have. You may be surprised.

[mathiverse]

I have experience with Medicaid in a Northeastern state and it was great. I got lucky in that my existing providers took Medicaid, so I didn't have to change doctors. I got the same care except the out of pocket costs were lower or non-existent for PCP appointments, specialist appointments, ER visits, and medications. I had to use my insurance for all of those things during the time period in which I had Medicaid.

[7Wannabe5]

What Ego said. My primary care provider pretty straight-forwardly informed me that the Medicaid option provided better care/coverage for my expensive chronic condition than the best marketplace deal, and I haven't had any difficulties since I re-affiliated myself with a major research hospital/system. However, there are some downsides to life-planning, because, in theory, Medicaid eligibility is monthly as you go qualification (although based on AGI), whereas the marketplace plans are yearly estimated forward qualification. So, for example, although earning/spending less than $18,000/year is not much of a problem for me, keeping my income steady at less than $1500/month can be. Also, when my income/spending was very low for a few years, I did over-estimate my income forward in order to qualify for the marketplace rather than Medicaid, because I assumed the Medicaid option would be worse, and the techno-bureaucracy eventually forced me to take the Medicaid option. IOW, there must be an algorithm in play that only allows you to over-estimate income a couple years in a row.

OTOH, another advantage of the marketplace over state-managed Medicaid option is that in my experience, the federal bureaucracy is much more efficient and accessible. So, for instance, if you had to appeal to the state-bureaucracy in order to get an exception from standard calculation of income (or what have you) in order to remain qualified, it is entirely possible that you could be stranded without coverage for quite a while until resolved.

Anyways, I very much empathize with your realistic choice to spend money on machines , frozen food, etc. due to your disability. It is difficult for me to accept the fact that I pretty much need 24/7 access to a modern bathroom due to my condition, even though I am now approximately 90% in remission. Important note being that these kind of realities will likely eventually have to be faced by majority members of this forum, unless they wind up in "lucky" minority that strokes completely out at 59 yelling at driver in front of them.

[theanimal]

Also, when my income/spending was very low for a few years, I did over-estimate my income forward in order to qualify for the marketplace rather than Medicaid, because I assumed the Medicaid option would be worse, and the techno-bureaucracy eventually forced me to take the Medicaid option. IOW, there must be an algorithm in play that only allows you to over-estimate income a couple years in a row..

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?

.
OTOH, another advantage of the marketplace over state-managed Medicaid option is that in my experience, the federal bureaucracy is much more efficient and accessible. So, for instance, if you had to appeal to the state-bureaucracy in order to get an exception from standard calculation of income (or what have you) in order to remain qualified, it is entirely possible that you could be stranded without coverage for quite a while until resolved.

This many times over. Mrs. Animal and baby animal have been without health care for the entire year due to state bureacratic incompetence. We applied for healthcare on the marketplace on November 1st last year and it was determined that they were both eligible for Medicaid. We heard nothing from the state and followed up multiple times. It turns out they were backed up processing applications for multiple months due to lack of staff. By the end of February, they had given us an ID number but it wasn’t a plan number and didn’t seem to be activated in any systems. 2 months later, they tell us they have no record of them in their system. Hopefully it’s better this year.