End of short rope | Arthritis Information

 

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

 

Before I begin, let me say that for whatever reason, there aren't a lot of posters here.....gradually the PsA'ers floated over to the Rheumatoid Arthritis forum on this website. So it might be wise to copy and paste your posting there where it would have a better chance of getting responses. [I really don't think that case presentation for RA or PsA is altogether different.]

 

I myself have not applied for disability but if I were to, I'd supplement all the medical records and affadavits with separate documents as described below so that the person reviewing the case could get a real glimpse of a day in your life:

 

1.  A list of all the everyday common activities that you cannot engage in.

2.  a list of all the everyday common activities you CAN engage in, but with help of some sort. Describe the help.

 

I'm sure if you post your message to the RA forum you'll get a lot of advice.

 

Good luck! And good for you for having the fortitude to put yourself first!

 

Sam

 

It's so cold in my apt, there's no heat and with 2 pair of socks, my feet are numb. The cats are huddled close to each other altho it kills one that the other is shivering and wants to snuggle.

 

I went out right before holiday; my meds were at a pharmacy in the city, which required a long subway ride that I normally take for work. Walk to pharmacy that lists its hours from 8am, hoping for a quick return home, pharmacy doesnt open until 9am because of holiday eve. Half hour later Manager comes in, sees me and while still wearing coat, opens Pharmacy window and gives me my meds. Remind me to see him after holiday to say thank you.

Walk to bank, need cash to send to daughter who lives abroad. Used to ask myself if things are so bad over there, why not come home over here, but cant ask that anymore, the question holds no philosophical water.

Walk further to buy some groceries, no milk and little food at home. I dont shop at bodegas & local mini supermarket meat section smells like a cat cemetary.

Now with heavy bag over one shoulder and tryig to use cane, walk one last stop to Petco because the boys needed something new...its been awhile. Found a toy with raffia that scratches as its dragged and sure to be fun.  It was fun...when it was warm enough to run around and play.

By the time I got home, pain meds were useless. I dont think my day was more than a normal person would have done-small list of errands-the pain was so sharp cat napping wasnt possible...I float on the surface of sleep trying to go deeper inside and cant dive down far enough to dream.

At 5:30am the door bell blasts. Impossi ble I thought, another one of those noises I hear that no one else does. Frightened, shaken I lay listening...door bell rings again. It could be Hell or the end of the world I am that frightened. Who rings the bell at such an hour, in such cold and dark? Only if the building is burning and we must leave. I look and see both cats are sitting up, terrified of the loud sound the bell makes. Again, and again it rings. The neighbor must hear it, we always hear each other's bells. not a sound anywhere, no doors, no voices.

 

7 rings and I go to the intercom and in a deep rough voice ask who it is...a squeak in a language that isnt english and no more rings. a few minutes later, the front door is opened and someone walks up the stairs and closes the neighbor's door. Either drunk or forgot their keys, better to ring my bell hoping I make the trip down a flight than bother the people they're staying with.

 

There is a Santa Claus, Virginia because my rhuemi emailed me to come into the office and discuss LTD in 2 weeks. I just cant do it anymore-tried every which way to make myself work in a world thats increasingly cold, demanding of impossible tasks and multiple deadlines, unforgiving and unfriendly, but mostly filled with younger employees who snicker and make snide remarks as if I'm too old to see or hear or get their inside jokes.

 

I used to wonder how I got from there to here, but its useless wondering now...all of life is much like Alice's trip down the rabbit hole and finding what made sense on the other side of the mirror is now confounding and truth is totally subjective...so they like to tell us. The only ones who struggle with life are those who maintain a set of beliefs.

 

 

 

I stop by - not often - but I do.

 

How's it going? Where do you stand on the LTD?

 

Am thinking about what you wrote:"  The only ones who struggle with life are those who maintain a set of beliefs." True, but better that way, don't you think?