Ugh, so many stories we all wish we didn't have to write! This disease really does suck! It reeks havoc on our livelihoods, our social lives and mental health.
I'm currently lucky enough to work for a large pharmaceutical company (yes, one who makes a few of the biologics, we discuss here) with a boss that gets it.
I can use my heating pad at the office and do, every day.
Work provides ergonomic assessments for all employees, so I have a great chair, sit at the right height, monitors at right height, blah, blah, blah
I can take sick time for my Remicade infusions (which I always schedule in the afternoons so I don't have to take full day off every 5 weeks- and bonus the Remicade is free)
Hours are flexible with start and end times
Can work from home one day/week-that's my infusion day-minimize time lost due to commuting.
I'm also a mom to 3 - my twin boys are in their senior year of high school, and 12 year old daughter is in 6th grade. The boys don't drive (don't ask, I don't get it, I'm begging them, and my daughter plays tournament softball (currently practices 8 hours/week) and plays basketball, so we're always hopping.
I own and am responsible for 2 GMP global computer systems and have to sometimes take off hours Webex meetings - not great for sleep.
I love what I do, but my group is under staffed, and my job is stressful, with the added responsibilities that come with regulatory compliance associated with Pharma. Most of our IT is outsourced, so they tend to have a high turn-over rate, so I serve as IT, Validation, and quality compliance for the systems too.
I have a problem employee who makes everything personal with me and acts like a child.
I often have brain fog at work-I don't often feel like I'm at the top of my game anymore
Work stress often induces flare-ups
The fatigue and ability to concentrate are bad-I don't feel as productive as I once was - I do get hit from all sides all day long though-the systems are the most important part of my job, but oddly, I have little time to focus on them during the day due to other priorities. I often work nights and weekends to try to keep my head above water.
The stupid politics and difficulty of all the spam that should be easy that is increadibly hard and frustrating that come with large companies now infuriates the hell out of me. Oh wait, there's that flare up😜
While the office allows my hours to be somewhat flexible, my families' needs ultimately dictate my hours-as they should! Just the juggling act we all do.
46 year old female
Fusing SI joint, spinal calcification, stenosis
Simponi, prednisone (still trying to get off-but it works so well), folic acid, leflunemide (don't think it's working)
Been on but didn't work or had bad side effects: sulfasalizine, Humera, methotrexate