This is mostly a venting for my mental health kind of post but I will gladly take advice and words of wisdom.
I'm between a rock and a hard place right now. I was diagnosed with RA, but then a rheumatologist called that diagnosis into question and stopped DMARD's. She was probably wrong, but if it isn't RA, it is almost certainly PsA, Lupus, MCD, and/or something else in that family (all of my other specialists agree on this point). I've been on the hunt for a new rheum since mid-April. I finally have an appointment with someone who seems promising, in mid-October. In the mean time, the only treatment I have is Indocin, Baclofen, and a very limited supply for Prednisone for "as needed" use.
I have a new boss at work who is not employee friendly and who keeps dropping hints that I'd better get it together fast. They keep implying that if I was just more assertive and motivated to get treatment, I'd be fine and they seem to expect that once I see the new rheumatologist, I'll get medicine and will be back to 100%. I can explain until I'm blue in the face that this is going to take time and nothing is guaranteed, but it doesn't sink in and even if it did, it would not help my situation. I'm just trying to be honest and set realistic expectations. I know that I am resented both because of my physical limitations, sick time, intermittent FMLA, and the cost of my health care (my employer is self-insured). I used to have stellar performance evaluations, I know that's going to change with the new, less understanding boss. They're being hypercritical on performance in a clear effort to build a case so that it doesn't look like retaliation for FMLA.
At the same time, my health has rapidly deteriorated and continues to deteriorate. I go to work, max out my meds to get through the day, come home, crash, rinse and repeat. I often have mini-flares because even a minimal amount of walking, being on my feet or sitting in a bad chair during a meeting = overdoing it. Increased pain, swelling, crushing fatigue, higher than usual fevers, mouth sores, cognitive dysfunction, it's bad and will cause me to be absent for 1-2 days at a time. I have multiple torn tendons that are also causing trouble and my ortho seems to be coming to the conclusion that surgery and PT won't help me because they just keep tearing. Having an MRI with contrast on Monday to try to get a better picture (and maybe capture proof of synovitis). My home and personal life is typically non-existent because I'm giving work everything I've got. I'm not sure that I've really crossed the threshhold into full disability. Maybe that's wishful thinking, I don't know. I only have a few more classes to finish my degree (and they're easy ones) but the last three semesters I've had to withdrawl for medical reasons. I registered again this fall, but I fear the same result.
So, my diagnosis is iffy, I'm not currently in treatment, I have no guarantee that the next rheum will be worth a damn (though he gets good patient reviews), I'm falling apart. I'm putting in 110% to try to go to work and do my job and still coming up short. Right now, I'm the breadwinner and insurance provider in my household. My SO and I are not married (we could be but I've been putting it off because I don't know how it will affect my options in the future). He is self-employed and the last couple of years have been rough. I do have long-term disability insurance through work, if I qualify, it would still mean a cut in take home pay and a loss of benefits and, we can't afford to live on SSDI, not that there's any guarantee that I'd get it. I also have major hang-ups (pride and shame) involving collecting SSDI. I hope that eventually his business will get to the point where he can support us, but then I have anxiety about the outcome of this election. If the ACA remains in place, we live in a state with a robust exchange, and we'd be OK. If the ACA is repealled and not replaced with some sort of safety net for decent affordable insurance for people with expensive pre-existing conditions, we'd both be royally screwed (he's insulin dependent).
I just don't know what I can do to improve my situation. I don't know at what point I should be considering disability. I'm guessing that it would be hard to get until I have a rheumatologist with a definitive diagnosis who supports me and I've tried biologics etc (I've been on four DMARDS, due to reactions, I wasn't on any of them long enough to see a significant difference). I don't particularly want to cut my income in half or deal with the stigma associated with SSDI, but I don't feel warm and fuzzy about being a burden on my employer while I drive myself into the ground either.
Hi,I'm married and love reading the Bible daily , Christian music , and gardening .We are glad you joined .Smil7
Hello I have asked before for prayers and when everyone prays for me it really does help me. I want to ask if you may all pray for me to have the motivation and drive to get back into fitness, workoing out and eating healthy. I used to be into fitness before I got schizophrenia. I miss it. It kept me happy but now with schizophrenia I lost my drive and discipline to continue. If I can miraculasly...