Creaky, but still working (employed) | Arthritis Information
An angel named Sam who is listed as a Senior Member suggested I repost my psoriatic Ar post here, because things were verrrry sloooow and quiet on the PA board. If my post is redundant and contains stuff you're sick of reading, heard it 1,000,000x already, questions have been answererd elswhere, please just point, my work is reading and writing all dern day anyway. Sorry, it would be polite to say hello and thank you all for any help...
My post yesterday was:
Hi everyone...this is my first post and the first web forum I've found dedicated to psoriatic AR, so thank you in advance if you are here and reading.
Brief overview...(or, how to condense a looong life of misdiagnosis and ignorance into one post)
Had psorasis as a child, but as a 57 yr old, I will say either it wasnt well known 50 yrs ago or my parents just didnt know what to do. It was localized and disappeared in my late 20s; I married, had multiple children, suddenly became deathly ill with a sky rocketing white cell count that no one could account for, PC doc gave me multiple antibiotic injections, snt me home..to continue caring for huge family.
Divorced, started working full time and going to college, full time. Strange physical problems-lifetime of nightmare Ob-GYN hormone issues culminated in ER surgery removal of uterus at 41, ongoing misdiagnosis-cardiologist,shrinks,PC's all tested, all came back negative, told nothing but stress. Since '87 loss of muscle control/spasms, chest pain, bones started crackling at hips, knees, felt like walking thru waist high water, sleep becomes fractured, not a full night, just cat nappng, then falling asleep almost impossible.
Finally, finally after another ER surgery after misdiganosis of small bowel obstruction 3x by same ER, was rushed to NYC hospital and had abdominal surgery. Now its '07 and after 1st rhuematologist suggested elavil for sleep, I waved bye bye and looked for 1. A woman doctor, 2. a rhuematologist that might take me seriously 3. I was a very sick, depressed woman. Luckily or divinely, I found a woman rhumeatologist who diagnosed me initially with sero-negative RA and then seeing the outbreaks of psoriasis, changed my diagnosis and began me on methotrx, Enbrel, sleep medications, Lyrica-I forgot to mention that a neurologist tested and diagnosed severe FM and an ENT found a sinus tumor close to my eye after I asked for a brain MRI and it was allowed. Tumor was removed and I stopped misstepping and falling.
So, here we are and the Enbrel is barely working after 2 yrs-I could not tell you what methotrex is doing, it doesnt seem to effect anything if I take it or not. I'm about to start max dose and not happy about it, but I can barely get from point A to point B and I have a full time job and commute on subways which are a nightmare...no one gives up their seats, I'm ashamed to use a cane not that anyone would get up anyway and my employer is oblivious as I disintegrate, as long as my deadlines are met. Dr. and I requested legal ADa accomodations, lighter workload, hours and after months of trying to push off implementing some kind of agreement, I got some minor adjustments that turned into a cold shoulder from direct boss because she said, what will the rest of the team think if you leave half hour before them? I stuck it out for 12 months and said, thanks but forget it. It turned into me and the rest of the department dealing with me as someone to work around rather than a colleague.
My doc has suggested LTD saying she's confident in presenting a clear case for it-I'm grateful and shocked, as she said this because I'm wondering if I'm an idiot and not understanding how sick I am? I have many cognitive problems, like I can no longer do 10 things at once and still have to, I need to do one project at a time if I take on too much I mentally short circuit, I dont even knonw what I'm looking at.
If you're still reading...I'm wondering who has applied for disability and specifically how difficult was it with PA? My doc will not enter anything but the PA as a basis as she feels its cut & dry strong case. I would appreciate any and all feedback, suggestions on what to start pulling together in terms of paperwork, documents?
thank you all
Goodness! I'm sorry you've had to experience all this crap. I don't know a lot about disability (but we have well-versed members who, I'm sure, will provide their knowledge). It sounds to me like you'd be a shoe-in though! That's kind of bittersweet to hear...
I just wanted to say welcome to the group! I'm sorry you had to find us, but I'm glad you're here. We can all use new friends. And you came just in time for the holidays. Bonus!!
Hope you're having a superfantastic and extra-comfortable evening!
Just wanted to say welcome. Best of luck to you in finding a solution to your problems.
Hi Creaky, firstly, well done for still working although I think thats why you are probably worse at present due to all the stress! My advice would be to get as much back up as you can from your Drs, physios, occupational therapists and anyone else involved, only tell them about your worst days, if you suffer depression make sure they know as that on its own is enough to qualify in Australia. Tell them what you can't do anymore and if you need assistance at home apply for it and let them know. I just became so unreliable, anyone would be mad to employ me, I suffer very badly controlled RA and other comorbidities but rapid fatigue is the worst offender, so make sure you mention everything Thank you all for your insights...I'm in the US and it seems from word of mouth mentioning mental illness kills any chances-our insurance terminates LTD after 2 yrs if mental illness is the cause. As anyone of you can imagine or have experienced, living w/chronic pain does bring on depression, with the doc I have who takes everything into account has made all the difference. I fell today crossing the street while at work; the project involved an outside contractor who had arrived to do the job. I fell splat in the street, think my cane caught on something by the curb. A normal person would haved broken their fall with their palms, but somehow I landed on face down but using the back of my hand with the psoriasis. The fall broke more skin which bled, swelled and the street crud scared me more than anything because I've dealt with staph multiple times recently. Since the contractor was waiting, genius was helped up by nearby construction men and she hobbled over to the job. At my age I'm still terrified of losing my job, being homeless so I keep showing up nose to the grindstone...this was not work I should have been doing, but the men assigned to do it shrugged it off and how do you supervise people like that? Like dogs that smell fear, they go right for that person. i finished 3 hrs later, went to office washed up and left.
You would think with a small company where people know each other for years that when something is obvious, bosses would sit down and say, maybe you need to consider disability? Not here...Hey, "Ducky" [short for "Duck's Down],
I'm glad you're over here on this forum as I'm sure someone here has had some experience in getting disability. Don't be shy about "bumping up" this topic. [Maybe you can edit the title to read something like, "Need Help Making My Case for Disability" or "Apply for Disability - How?"]
It's true....in the US if you mention a psychological condition too many people think you're whacko. Sad to say that. Looks like Australia is way ahead of us in that regard.
I won't defend businesses for not sitting down and asking you if you have considered disability. Managers simply don't know how to approach it, and I'm willing to be that some believe if they do, it might be grounds for a lawsuit.
This might be a good time to raise the idea that people with RA or PsA or other debilitating diseases should start thinking early on about different options for the future. For example, if you use computers all day long, look for a company that allows its employees to work from home. Many high tech companies do that.
But the immediate problem here is helping you to prepare for your disability case. Who's got some good suggestions???
Welcome to this board, I've found help and solace here. I'm so sorry you're experiencing all these problems and {{HUGS}} re: your fall in the street, how awful. Best wishes getting on disability, keep us posted.hello everyone...
I've been a member on another board ProHealth for a couple of years.
Members on the fibro board have been discussing use of opiates, particularly since certain celebrities lately are giving a bad name to really helpful meds like ambien and vicoden.
I dont want to start a firestorm if this is a sensitive issue, but my doctor has been suggesting I use opiates to control my pain, because it seems its written all over my face and body. I have used them, they are actually the ONLY meds that completely alleviate pain which is why I am afraid of them.
That may sound like *ssbackwards thinking, but with all the rehab shows of people who cant see straight or need interventions-I dont need another medical issue to deal with.
Doc told me where there is actual physical need, addiction is not an issue and learning how to use the meds is equally important. BEtween my creaking, crackling and falling yesterday I didnt sleep last night. I caved this afternoon and took the med she prescribed and as I sit here writing, have to say its hard to recall the level of pain I had only hours ago. It is nothing short of a miracle.
That said, its hard to make a case for disability if a med can have this type of effect. I would like to continue working and need to discuss with her long term use of this category of meds. It wasn't solely my pain that finally allowed me to use an opiate, it was reading another woman's post on the other board. She was upset about wholesale condemnation of a class of med that she's used successfully for 2 decades, a class of meds that allow her to function, albeit causing her chronic constipation (excuse me for mentioning that).
All this about using a med may sound obsessive but there were some solidly serious addicts in my immediate family, addicts I had to care for. I've avoided that horror and dont want to become one....
You know if you think about everything, you (I) sound like I think too much, but these days nothing seems simple or straightforward, whereas years ago a decision might yield a consequence, a decision to act today can impact your life and so many others...maybe that's what living in the adult world is about.
I'm still growin myself up
I havent reached "Ducky" status yet, but hope to get there in this lifetime lol.
Ducky,
I say whatever it takes to make you feel better, go for it. You always have to choose the lesser of two evils. With a solid medical team managing your pain, you should be in good hands.
Hi Sam...my doc is an Army of One lol (unless she consults with her own team). She's an angel, literally saved my life. I find trusting anyone, even a doctor very difficult, but I think you hit it right on, I actually slept through the night over 8 hours and after waking to feed the 2 furry brats, fell back to sleep again. This is historical, albeit it boring for others, for me.
Hi Ducky, I know what its like to try for disability, so I did a search on past discussions we have had on this subject. I thought this might help if you have the time to read it all.
http://www.arthritisinsight.com/forum/forum_posts.asp?TID=22045&KW=disability&PID=246170#246170http://www.arthritisinsight.com/forum/forum_posts.asp?TID=22057&KW=disability&PID=246273#246273Best of luck to you and welcome to the board!
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