Hi Colbey,

One thing I did learn during this process is the importance of filling out the paperwork the "right" way.

The first thing is...it doesn't matter to them if you can't do your old job...it only matters if you can do ANY job. If you can't stand all day, you can still do a desk job, for instance.

When I first applied it was on my own. After denial,appeal,denial, I did get a lawyer before my hearing in front of the AJD. Do you remember the form that asks how many hours a day you can sit/stand/etc ? When I filled it out, frankly I think I was too honest. I'm not saying lie......I'm saying be careful to not just give them your best case scenario.

In my case, it was also worker's comp. WC was trying to deny my claim.....saying I was exagerrating my pain levels, etc They had their little spies with video cameras peeking in windows at my house. Some days, I'm in bed most or all day due to pain (TOS, cerv radic, and RSD) to try to conserve my meds for the few occassions when I do get out. Somedays, I am able to sit up in a chair most of the day. I veg in front of the tv and pass the time playing computer games, or pecking away at forums like this.

I need a high back chair (wing chair) to support holding an icepack against my neck and to support my L arm. Because I also have hypertension, I get swelling in my feet and frequently have to elevate my legs on an ottoman. Most days, I have to go lay down during the day. I frequently nap...because of pain I never sleep for more than an hour or so at a time. I have a table that I can pull up right in front of me. I have a laptop which I fiddle with with my R index finger.

On the ssdi forms, I certainly did not want to exaggerate anything......especially knowing there is video confirmation of exactly what I do. The form says.......what is the maximum you can sit (at a desk). Well, somedays I can sit for 8 hours, so that's what I wrote. I added that that was only some days and under certain conditions....as I listed here. Because I checked off that 8 hour sitting box

According to SSDI, that means I can do a desk job/computer work for 8 hours a day.

They ignore that I need narcotics to be able to shower, so if I bathed before going to work I couldn't drive because of pain meds, etc. They don't care that I cannot even wash my sheets regularly when I sweat profusely due to the RSD. This has been almost 5 years for me, so my boys were 8 and 10 when they had to start doing my laundry for me. It's a struggle with me staying in jammies at least 6 days a week. I'd look like a freak if I needed a real outfit each day for work.

I think a big part of our problem is when you have a non visible disability. If you had no legs, soc sec has a better idea of what you can and cannot do. That you have diabetic neuropathy causing pain in your feet doesn't paint them a picture. You get up and walk to the bathroom without assistance, right ? Then according to ssdi, you can walk/stand.

I found out that doctor's narratives saying totally disabled or cannot work don't seem to matter to them. It's all about that sit/stand functional assessment form.

Before my hearing my new primary and new neurolgist filled out those forms. My primary was asking me the questions as he filled it out. He asked what I do in a typical hour, so I said I'd probably be sitting in my chair most of it , maybe going to the bathroom or getting an icepack, etc So, he estimated 45 min sitting and 15 min standing/walking and multiplied by 8 hours for 2 hours standing and 6 hours sitting. Somedays I can easily do that. Most days that is interupted by laying down several times and/or napping.

At my hearing, the judge asked me why my form, my primary's form, and my neurologist's form all said different things. My neurologist filled out the "worst case scenario" of I couldn't do anything because I'm in bed all day.

Thank God the judge asked me and thank God she let me explain. She said discepencies (? spelling) like that are a major cause of denials. I got to explain my form was "best case scenario", neuro was "worst case", and primary was in the middle. She said she wanted to know what an average day was like.....not worst pain or lowest pain days, but average.

At the hearing there was a member of the vocational board there to determine what work I could do. It came down to him saying that there was no job he could offer which would allow me to lay down with an icepack every few hours.......so....ta da ! I am disabled.

Pain didn't matter. All the household chores I can't do, etc didn't matter......it was all about an employer could not be expected to provide a bed for me to lay down.

Check what you wrote on the functional assessment form.....that seems to be the key

Hang in there,,,,,approval is possible. I was out of work for a year when my WC lawyer suggested I apply for ssdi. It took 3 years for me to get approved.

Being free of worrying about money is a HUGE relief.

Like you, I mourn the loss of my old life. I am slowly discovering a new life. I hoard pills so I can double up when I get a chance to go out a few times a month. I've swallowed my pride and told friends I would love to see them more, but they have to come pick me up. I'm paying for a chiro and massage and that helps a lot. I have found exercises that help. I am hopeful for more relief when WC approves my visit to the pain clinic for trigger point injections and nerve blocks.

I hope you find some of this helpful. Someone owes me an extra Vicodin for all of this typing !

Regarding the ulcerative colitis poster............absolutely that is an "approvable" condition. You have to "prove" the severity. You need to be clear on the paperwork that any job would have to allow you, at a moments notice, sit on the "throne" for 3 hours at a time, etc.

Good luck everyone. It's such a difficult process for so many of us to get approved. Have faith !