Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
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.
But I am glad you’ll be seeing a new rheumatologist – think positive and hope that s/he pulls a rabbit out of the hat. Although I do have to wonder why the DMARDS were stopped [though you mentioned issues with them anyway]. BTW – If it’s PsA the treatment is identical to RA.
I can’t address SSDI because I haven’t participated in it. But let me say that I fully support anyone in need applying for the benefits. That’s what you paid into for all these years, right? There’s no shame in that. You need to get over that stigma. In reality, it’s like Social Security – you pay into it, then you draw out of it when it’s needed. So you need to let the SSDI “shame” go.
Yes, its darned hard trying to work and until you get the right meds you feel like you’re spinning your wheels or have brain fog or just simply are embarrassed to be in the workplace because you believe you know what your boss and co-workers are thinking/saying. The only one to be concerned about is your boss. Of course you don’t need to divulge any part of your condition to him/her [I’ll use him] but there’s some peace in knowing that he’s on board with your efforts. If you think he needs more of an education [and it sounds like you do] take him to lunch and explain. Or print out quick and fast to read information to make things clearer and give it to him. If you think he’s not approachable, then go to your HR department and explain the situation – that you’re trying your best, you’ll need time off and understanding while you find the appropriate meds. Then the HR person can talk with your boss. And if you still have a problem – is a transfer possible? [Helluva time to transfer though.]
You can’t worry about the ACA. Prioritize what to worry about. Put ACA on the shelf for now. Worrying won’t resolve a thing.
I feel for you. And I hope you SO can either make the business a go…..or get a regular job.
Vent all you want.
I would love to transfer, but as you said, it's a terrible time and in my condition, I really wouldn't be any better off, I'd just burn another bridge.
I'm really hoping that the new rheumatologist is a keeper and that he can help me get things under control but it's been a long road full of disappointment. I'm short on hope and afraid that my reputation will be ruined (and doors closed) before I find effective treatment.
I'm also afraid of being blown off by yet another rheumatologist. I have so much anxiety about this, I know it's not helping.
Any possibilities, if it did worsen, you could move in with family/ friends, to save money? It doesn't have to be forever.
And, if you can, don't let the new boss take up any more space in your thoughts. I recommend writing a journal with dates, times and specifics. It's not right or legal to punish a person who has a disease. It wouldn't hurt to talk with an Attorney, just to hear what your options are. Usually, they don't charge for the first consultation. It sounds, as if, it's turning into a hostile workplace. You didn't ask for a disease.
I'm hoping and praying this gets resolved, in the most excellent way, completely in your favor.
I hope this new rheumatologist is one who gets what you are going through, and finds meds that help your situation. In my case, I was an elementary school teacher, and my union did not want me back, even during the years I had RA under control, because RA means too much time away from the classroom.
It took me a while, but I did get on disability, and stayed on it for 16 years. Of course, it was not nearly what I would have made as a teacher, plus my pension is correspondingly much less. Not to discourage you, but RA is the gift that keeps on taking, unfortunately!
Still, some manage to work, and I think that the first step for you is getting a proper diagnosis and then treatment. Rheumatologists seem to measure time in years, not the daily, hourly, minute by minute pain we experience. Maybe even centuries?
I did have a husband who was able to support me financially as I bridged transitions, which helped a lot. Still, I worked hard for my degree and I was diligent in my teaching duties, and I never got to even get to max, let alone accrue more years.
I don't know much about American disabilities and accommodations, but I hope you will listen to what others are saying. And you do need to realize we have to keep adjusting to the downward progression of our bodies. Everyone does in life, it is just for us, we have to much earlier, and accepting disabilities is something some people will never experience. Sorry you are struggling with all this, but I certainly understand.
My advise - start getting your ducks in a row financially now. It can take years to receive disability even if you are easily qualified.
My wife had already been off work with no income whatsoever for 8 years when my RA started. After my first year with RA I started seeing the writing on the wall - that if something drastic didn't change that I would not be able to continue working. All I could think about was how I was going to pay our mortgage and bills.
Long story short - I had the mindset many years ago to not live beyond my means and to have AT LEAST a 6 month emergency fund. I'm talking about having no income whatsoever and be able to pay ALL your bills from that fund. 6 months worth wasn't enough be it made it possible to survive.
I worked for at least 1 year longer than I should have because of this which I feel added to the severity of my RA. What I am trying to say is prepare for the worst and hope for the best. There is a good chance that your RA might spiral like mine and you will have to stop working at some point.
Be prepared!
While under her care, I failed four DMARD's, two due to severe allergic reactions, two due to intolerance. She was talking about a biologic before things blew up in April.
I had a heck of a time finding a rheumatologist who would agree to see me after that. I finally saw one in June who was a dismissive you-know-what. It took until the beginning of August to find another one willing to see me, and that appointment is in mid-October.
The silver lining is my pain management specialist. I swear, he knows more about autoimmune disease than any of the rheumatologists I've seen and he's more than willing to help manage my care, once I have a diagnosis and treatment plan (he's local, rheumatologists are not).
We are working on our financial position. Once we sell our old house (probably in the next year or two), we should be able to pay off the mortgage on the current house, or get close to it. That would cut our monthly expenses by almost 1/3rd. If I didn't have a commute, I'd save a few hundred per month in gas and vehicle maintenance. We both have retirement funds. We would take huge losses by dipping into them and I wouldn't be able to until after employment ended (including any period of disability insurance). I would prefer to leave the retirement funds alone if possible. I'm only 37, things are going to get much more expensive before I die, I'll probably need that money in 30 years. The only debt we have is the mortgage and student loans. He is working on a new project that should increase his income. When I think about it in those terms, we're actually in a somewhat OK place, financially. We have grown accustomed to having more security, but a series of expensive emergencies have drained our savings and we're freaking out a bit. I am already extremely thrifty when it comes to discretionary spending. The real concern is health insurance for both of us. Without good insurance, all of that would go 'poof' pretty quickly.
I guess that's where I am. I'm starting to see the writing on the wall and trying to plan and it scares the hell out of me. I have a relative who has been living on disability for the last 20 years and it's been impossible for them to make ends meet. They also take a lot of crap from family who look down on them.
I admire you for addressing these issues. Too many would just sweep it under the rug and take it a day at a time.
I wish you the best of luck. Wish i could do more...
It sounds like the one person that has your back (besides your SO) is the pain management doc. Have you picked his brain about who the absolute best rheumatologist in the area would be? He probably has knowledge/opinions, and they are probably worth hearing. I don't remember where you live: do you have lots of choices, or are you in, let's say, rural Wyoming where it's a four-hour drive to the closest town, and it has 8000 residents? I hope you have some choices.
You sound financially astute, and that is a good thing. Let's face it folks, we all have a higher-than-average risk of having to change courses with jobs and careers. Seeing statistics recently about how many Americans have the resources to deal with a $400 emergency was scary: it's not many. At least in my life, the $400 emergency is pretty common, and larger ones crop up too often.
If you have had psoriasis and joint symptoms since childhood, shame on every single doctor who has failed to diagnose you in the meantime. No excuse for that. My rheumy (third time was the charm) says that in ANY patient who presents with psoriasis and joint pain, the difficulty lies in proving they have anything OTHER than PsA. It's kind of a no-brainer: the assumption is PsA unless you can prove otherwise.
Which brings me to my next point: do you still have psoriasis? If that's a "yes" and you have a dermatologist, can he/she be of any help? A mildly competent derm should be aware of the potential for PsA in their Ps patients. Even if they are not willing to treat you, and some will, your hypothetical dermatologist might also be a good source of a referral to a rheumatologist who is familiar with PsA and who is at least partially sane.
Speaking of less than sane, what's the story on your last rheumy getting her panties in a knot about your having seen a pain management specialist? Is she playing the "drug seeker" card? It almost sounds like she has black-balled you in the community, if other nearby rheumys won't see you. Any idea what that's all about? (I had a similar experience with orthopedists. Felt like {OK, knew} mine was missing something, and wanted a second opinion. No anger, no ideas about getting rich with a lawsuit, just wanting a straight answer. They do stick together.)
No real advice on the employment situation. I have only ever worked for microbusinesses, and have no experience with these games. Sounds miserable, though.
Two months until you see the new one. I hope the time goes quickly for you, and that you will strike gold with the new one.
I too was receiving hints, direct and indirect, from my employer. Don't take these lightly...you're not being paranoid. Like you, I had been relatively open with them as I was trying to find a diagnosis. I even applied for some accomodations which were denied out of hand. Prior to this, I received top marks in every annual review even receiving ratings so high I was told by many there that they were unheard of before.
For me, my 1st rheumie was a couple of years prior. However, she had mis-diagnosed me, fortunately, with another type of inflammatory arthritis so the meds were the same. It kept it in check mostly for 2 years. Then, out of nowhere, my RA progressed rapidly, hitting me hard and fast. (cont)
It finally came down to an ultimatum from my employer about 2 weeks before my appointment with my new rheumie. Seeing as how I had both short and long-term disability through my employer, I immediately filed for it. It began immediately and within a month, I had the support from my new rheumie to finalize the approval.
It was a struggle financially, yes, but it could've been worse, and frankly, I had no choice. It was time, I just didn't want to accept that. If I had quit or been fired before filing, I would not have been able to be on both my private disability and SSDI and every bit helps when reducing your income. When it comes down to knowing if it's time to file for disability, my suggestion is this - if you're asking yourself that question, it's time, probably past time.
"When it comes down to knowing if it's time to file for disability, my suggestion is this - if you're asking yourself that question, it's time, probably past time. "