Congrats on finding ways to prioritize your health, and I’m impressed you are managing ok with just naproxen and vitamins but concerned you may want to look at more treatment of the underlying disease? I mean aside from lifestyle changes to support your best well-being, which is fundamental to any medical treatment working, but with lupus your body already has an established attack on itself at the cellular level, which usually requires immunosuppression to contain it and hopefully start a good remission when you can get back off the drugs and manage by lifestyle! I learned something that really made me think twice about my tendency to avoid starting drugs for fear of always being on them, from a rheumatologist I used to work for (in an office job, coordinating clinical research studies for autoimmune diseases! More on the potential horrors of office jobs in the next paragraph!), who is a regional lupus expert on the west coast, MD/PhD from Yale and a nice guy with fantastic patient manner and listening skills to boot (Stanford Peng at Virginia Mason Med Ctr in Seattle.) He explained that early, aggressive treatment (within the first year of diagnosis if at all possible, or as soon as possible thereafter) actually reduces the likelihood of needing chronic immunosuppression, steroids and even symptomatic management (like naproxen, which has many of its own problems, as you’ve experienced!)… And it does this (with extensive bew evidence in current lupus research, which is happening even though it isn’t leading to many new drug options for us yet! Support the LFA/Lupus Awareness Month!) by increasing the chances of a good, stable remission! Then plaquenil is important long-term to prevent flares/relapses and manage low-grade disease activity. My personal leaning towards natural health approaches has me convinced that in milder or more stable cases, anti-inflammatory diets and supplementation with a very moderated lifestyle (working less or flexibly from home, very low personal stress with excellent exercise, social and mental wellness, etc…) could contain the disease very well once it’s first put into remission. I think my case isn’t a candidate for lifestyle-only management, because I had already adopted the anti-inflammatory diet several years before I was diagnosed (to deal with early symptoms, and it DID help and I stick to it vigilantly especially now that my disease has worsened so much!) and even seriously overhauled my stress and commitment level when I graduated college (see my post on Dobby’s work at home thread for more on that…)
So, I think you’re totally on the right track to look for compatible work options, I encourage you to discuss with your rheumie what level of lupus treatment (not just symptom control, but immune-modulating treatment, which in some cases is just plaquenil, others low-dose steroids in short or continued courses, others, like me, cytotoxics or biologics)… AND I caution you against thinking an office day-job is the answer! You will be paid so much less per hour than you’re used to making, sitting at a desk for long hours hurts plenty as well (for me, MORE than being on my feet a lot, though a mix of the two and absolute choice when to sit and rest versus walk around is the key!) and the fluorescent lights and even computer screens will shower you with extra UV that will make your lupus worse over time even if it doesn’t give you an acute reaction… Worst of all, you may have an uptight boss or jealous/insensitive co-workers who thwart your attempts to have a feasible schedule and appropriate accommodations (just like at the restaurant; but this boss is in charge of ALL you earn instead of just the non-tipped portion, and may treat you as such with that level of controllingness!) It might not be bad like that at all, but I worked at a quite understanding place (autoimmune research center! But I didn’t know yet I had the disease myself and was not asking for accommodations or able to explain why I was out sick or late so often!) and I was experiencing significant pressure, strain, pain, sense of failure, worsening symptoms, and many other issues encountered in a 9-5 even by healthy people! So, be wary of what to expect from office work, and above even the work area itself look at how the company and employees operate and what your day to day work-flow will be like. And know you still may not be able to keep up as well as you hope… I had an ideal work-flow of 50-50 standing/walking vs. sitting time, fairly good choice of when to do which, understanding, supportive coworkers who heard me and helped me sort through my mounting health problems with plenty of knowledge and compassion to share, generous vacation hours and sick-pay practices and good advocacy from my boss to utilize it… And I still couldn’t hack it anymore. I left voluntarily to move to CA with hopes of returning to school (was gonna be med school, till I figured out why I was getting so sick and beaten down and that it wouldn’t just go away… So I altered my course and will do a master’s in SLP instead), but honestly I knew I was letting them down a bit and over stretching myself a lot to try to keep up. I never even sought similar employment after I moved, for one because I got sicker, and in light of all that knowing I wouldn’t make it through the first 3 months of the “trial period” without vacation or sick leave. That means not only no sick pay, but no LEAVE to be sick without being subject to disciplinary action, which after more absences than they’re ok with (like one or maybe 2 days in 3 months of full-time work!) would result in not being hired after the initial review period (aka, fired, and without disability or even unemployment, since you weren’t a regular permanent employee yet!) I personally see lupus as a gift to get me OFF the corporate day-job track, because it’s one of the most subtly exploitative industries to work in. Best of luck, but I hope you follow Dobby’s lead!
Whatever you decide about any of the above, you’re doing great because you’re acknowledging and fighting for what your body and mind need… Don’t let ANYone imply you are a quitter or a failure, because you’re actually strategically winning a war by accepting defeat in some uphill battles like inappropriate work, or on some previously-held ideals such as me accepting major pharma intervention after years of trying to detox from it (childhood overuse of antibiotics, processed food, lack of breast feeding, and overexposure to sun on the false sense of security of “all-day waterproof” chemical sunscreens are the other 3 factors in initiating my lupus… Aka, that one lump factor called being born into 1980s USA!) Don’t let jerks or societal factors hold you back from winning your war! Great job, and thanks for role-modeling for us!