I am so not a lawyer, but I have a lot of friends who work in Disability Rights - have you ever thought about requesting an ADA accommodation for a later start time? Not all employers qualify for ADA accommodations, but I actually know a lot of people who have that one.
It’s interesting to hear how you’ve made life choices to work around your chronic illness. So many small things add up!
I am so disappointed on how poorly society deals with support for chronic illnesses. I don’t know how everyone manages - I am theoretically healthy but dealing with EVERYTHING is too often overwhelming.
And - I feel like most of us are at sometime going to deal with a chronic condition due to aging. And throwing pills at it, then pill for the side effects of the first pills, etc. ad naseum is not dealing with it IMHO.
YMMV.
While not a magic cure, I’ve found going on an SSRI to be very helpful in managing my brain and the side-effects it was having on my life.
Sometimes pharmaceuticals are the answer for people, and that’s not a bad thing.
Lord I love my drug. I hate the cost, but having it has changed the course of my actual life. But luckily very few side effects from Miracle Drug and I now only need one shot a week! Yay!
I didn’t like when I had to be on a cocktail to manage side effects (Methatrexate + Predz + Folic Acid to stop hair loss from MTX), but I’d reckon it’s better to customize for your own biology rather than getting a combo drug that “tries to be everything” and fails. Many drugs can only co-exist in therapeutic pairs anyway. So eh, more drugs, whatever. It’s just access to them that makes me angry. 
I was on a very high dose of prednisone when I was first diagnosed with Crohn’s to get it under control. Getting the moon face side effect in high school was NOT FUN. And it gave me pre-osteoporosis and I have to get bone density scans every 3 years to keep an eye on it to make sure it doesn’t get worse, in addition to taking daily calcium and vitamin D supplements because I don’t want to get broken bones when I’m older…
@Oro - absolutely! Proper use of medications can be pretty miraculous! And some SSRIs do help with anxiety (not just depression per se). But I do see, especially with the elderly, that there is often this cascade of medications that begins with medication for the primary issue, then additional medications to deal with side effects. That’s where I get frustrated.
@anomalily - your RA treatment is a great example of a drug having a great impact on the target, luckily without lots of side effects. I’m glad you have this drug.
The access is an even bigger can of worms. R&D is expensive and few products make it to market - so I get that pharmaceutical companies have to recoup these costs. But then we see examples of price gouging, unwillingness to do research for “low profit” drugs, etc. Yikes.
I definitely get really mad when I see an older adult patient that is having a massive health issue, likely related to med side effects, from a med they were given just for risk reduction (vs a primary/acute event), like statins or BP meds or something, when it’s something on Beer’s list and they weren’t a good candidate. Or especially when it’s like, “oh, suddenly she had this really severe dementia, so we put her on an antipsychotic with anticholenergic properties, and now she’s having this TERRIBLE reaction” and then it turns out it was a goddamn UTI anyway… udhduhgdfgu.
Meds can be the best of times or the worst of times. Mindful prescribing is really just so necessary.
I had never heard of Beer’s List - very interesting!
It’s possible my hackles are still up from when I feel I got tricked by hospital staff into approving a medical procedure for my dad… grrrr! It was totally unnecessary and didn’t inform or change anything.
It’s really hard to be a good advocate for you own or someone else’s medical decisions.
Very, very much agree. I’m a nurse and I often feel overwhelmed when in the role of medical decision maker. No idea how laypeople muddle through- it is not made easy at any step, generally =(
Dang about Beer’s list, which I didn’t know about either. How old are the “older Americans” in whom the listed drugs are contraindicated? Asking for a friend…
Intended for 65 and older 
and definitely eye the “strength of evidence” and “severity of effect”. It’s way more of a guideline than a law- but many of them have alternatives, so it’s worth looking at risk/reward.
One of my sons (age 14) also has epilepsy. Last year he had surgery to potentially cure his epilepsy, but I am terrified about his future healthcare expenses. Right now he can’t be denied insurance coverage because he is a child, but who knows in the future. Every year, we assume we will hit the out of pocket max for him. Last year that was $2500. Then there is the issue of driving, which depends on how successful the surgery was, which we just have to wait and see…
Yeah…my insurance works differently, but there will always be costs. I’m glad he had a chance at the surgery. It can be amazing.
It could be worth pointing him towards the merits of government jobs (here they have the best healthcare).
If I hadn’t had a government job with its sweet bennies I would have been screwed when I got irrevocably sick. I wish everyone had that kind of security.
Yes, I think his best bet will be live in a big city with good transportation, and if not a government job, a job at a big corporation will probably be best for him.
Hello friends I have a degenerative physical disability (scoliosis, but not the normal kind) and have had boatloads of surgery (spinal fusion, hip bone grafts, ribs removed, 2 knee surgeries, etc.) which has resulted in chronic pain for the last 19 years or so. My mobility is pretty up and down but I am able to work part-time from home for now!
Does anyone else think about getting life insurance? Especially if you’re mostly supported by a partner? I’m so financially and otherwise dependent on my husband, and honestly it’s terrifying (in addition to heartbreaking) to think of what would happen to me if anything happened to him. I’m wondering if life insurance might make sense for our situation. My healthcare costs are very high and my lack of earning power is kind of scary. Disability is definitely a major motivator in saving for me, and it’s why I first sought out PF resources.
Life insurance makes sense when you have dependents - so I would say it is a good fit for you both to get life insurance on your DH. He may have life insurance through his work, but that is tied to his job (gone when he leaves the employer).
Hey! I can’t work onsite either, bc of disability, have you considered working from home? That’s what I do! There are a LOT of remote options these days, not as much $ as being in person sometimes, but if you want to do something to bring in money that’s what I recommend (to you and anyone else with a disability).
I’m not 100% certain what @Elle does, but I don’t think it can be done from home–at least not without a lot of expense for a dedicated space and work to find clients.