Psoriatic Arthritis and Disability

[Glennmaroney]

Are there any on here who have had to go on Disability because of PA. I,m only two months in and not ready to give up yet but I like to educated as much as possible so I can make the best decessions for me. I have been out of work since Oct 30th and the MTX has not started to kick in yet but I am only on 10 mg, third dose Thursday. I go back to my dr. the 20th and he said if I wasn't better he would up it. I am having to tread lightly with all my other medical problems.
If there are others on Disability, how long a process was it, ect?

[MikeK]

Hi Glenn,

I'm sorry that you're still hurting. I hope that the MTX turns out to be just what the doctor ordered and that you can get back work a.s.a.p. There's a couple of people who post here who are either on disability or who have applied for disability. Hopefully some of them will come along and describe their experiences for you. In the mean time, here's the links to some previous discussions that will hopefully will helpful to you:

http://www.psoriasis.org/forum/showthread.php?p=259683#post259683;

http://www.psoriasis.org/forum/showthread.php?t=17925&highlight=disability.

I hope this helps.

Good luck. Keep us posted and I hope you feel better soon.

Mike

[NPFLaura]

Hi,
I just wanted to add that you may be eligible for disability from your employer. If you think you are, you may want to refer to their summary plan description which will describe eligibility, process, etc. The links provided were regarding soc. sec. disability. Usually employment disability offsets social security if you receive both. Feel better..Laura

[Moderator]

Under the Advocacy tab there is a section from the Foundation about applying for disability. It is located at the following:

http://www.psoriasis.org/advocacy/assistance/disability/index.php

[nesielheum]

Under the Advocacy tab there is a section from the Foundation about applying for disability. It is located at the following:

http://www.psoriasis.org/advocacy/assistance/disability/index.php
Hey Mike? How did you miss this link?
Thanks for the reminder Moderator, :) all too often many of us that frequent the message boards forget about or just overlook a great deal of the useful information that is available to everyone at http://www.psoriasis.org/
Thanks for the reminder and best of luck to you Glen!

[docmks]

Are there any on here who have had to go on Disability because of PA. I,m only two months in and not ready to give up yet but I like to educated as much as possible so I can make the best decessions for me. I have been out of work since Oct 30th and the MTX has not started to kick in yet but I am only on 10 mg, third dose Thursday. I go back to my dr. the 20th and he said if I wasn't better he would up it. I am having to tread lightly with all my other medical problems.
If there are others on Disability, how long a process was it, ect?

Hi friend,

It often is a long process applying for social security disability. There are others here who have gone through the long process of applying, getting turned down (often) and then appealing. I am starting this process myself; I am currently on medical leave with my employer. I am on 50% pay (as a state employee in north carolina this is what I get on extended medical leave). I am now applying for a supplementary disability insurance policy that was optional for me on the state plan. I mention these things because different jobs have different kinds of benefits (I had totally forgotten about the supplementary disability insurance, for example). At the same time, I have to start the process of applying for social security disability. Taking thea advice of some who've written on the boards, I elected to go ahead and hire a national law firm to help me with this process. Since you are new to the diagnosis or treatment of PA, I think one of the most important things to tell you is to keep good documentation of all your symptoms, and make sure you mention all of these things to your health provider. Ask lots of questions! Keep track of appointments, meds, and how specifically your PA is interfering with your life....how much (or little) can you do that is required .... in typing, lifting, bending, raising your arms, crouching, etc.

I am learning this disability business as I go - in real time - right now. I will be reporting in on my experiences to hopefully help others who are applying as well.

Good luck to you, and please let us know how you are doing.

MK

[Kimbercat]

Hi Glenn and Mary Kay,

It's starting to sound like we need to start a disability club here on the boards. :( Do you suppose Binder and Binder would offer us a group discount? :confused:

[Momelie]

Can I be in the club, too? I'm in the process, as well, the waiting part at the moment. I don't think Binder and Binder is in my state, though :( As soon as I hear back on my initial application, I'll probably be getting some type of assistance for the appeal, though.

[Kimbercat]

Can I be in the club, too? I'm in the process, as well, the waiting part at the moment. I don't think Binder and Binder is in my state, though :( As soon as I hear back on my initial application, I'll probably be getting some type of assistance for the appeal, though.
Sure! Come on in....the water's....well...umm....a long wait...lol. :rolleyes: Apparently it doesn't matter what state you are in for some firms. The attorney that I chose is in Kansas, and I'm in WA state. While you're waiting to hear back, I'd suggest getting all of your medical information in order, as you'll need it when you continue on down the road. It's been suggested to me to keep a journal of doctors, medical appointments, treatments, and the type of problems you have as well as your pain level, etc. The other suggestion that I've heard strongly reinforced is if you are dealing with any anxiety or depression, or your primary care doctor has rx'd something along those lines, get a referral to a mental health professional (psychiatrist, psychologist, or therapist) to review your status and have it documented. Apparently this is something that SSD looks rather closely at. Best of luck, and welcome to the club! :p

[docmks]

Can I be in the club, too? I'm in the process, as well, the waiting part at the moment. I don't think Binder and Binder is in my state, though :( As soon as I hear back on my initial application, I'll probably be getting some type of assistance for the appeal, though.

Hey,

Yes, we do have quite a club forming! I just sent my initial forms into Binder and Binder today. It was quite an ordeal but made so much easier by the process they use. They had a case worker call me up and interview me; then sent me draft forms to review and I made corrections. Now I get my t shirt...literally...a little gift from Binder and Binder. I have to say they are extremely nice to work with and it makes me feel better to know that I've hired somebody experienced to oversee this business.

MK

[MrsSooners74]

I went with Binder and Binder and I COULDN'T have asked for more KIND. Caring, knowledgable people.. They really did everything the could to get me disability.. which after almost 3 years I finally got apporved for... Binder and Binder is nationwide and if they believe they will win your case it doesn't matter what state you are in. There was no Binder and Binder office in my state and they were sending in their lawyer to my hearing from New York City.... I would recommend them to anyone who is looking into hiring a lawyer..... Good luck to you all fighting for your disability.........

[slowe]

I guess I'm one of the lucky ones here. My disability claim went through without any problems. Then again, I have a lot of health problems besides p & pa.

[docmks]

I guess I'm one of the lucky ones here. My disability claim went through without any problems. Then again, I have a lot of health problems besides p & pa.

Sue, How long did it take to get approved from the time you filed your application? I am just wondering how long it takes when there aren't appeals, etc.

thanks
MK

[mildred1975]

how are u all ? well for my experience I applied for disability for my p. I have not yet applied for my pa, I was turned down, It took 9 months just for them to give me an answer, they had me going to doctors appointment that they had set up for me example, psycologists, dermatologist, regular family docs. It went on and on for months . although I regret not reading the " lost of pages" they sent to me explaining my deniel I just read the first part of it where it explains they denied me , I got so depressed that I throw it all in the garbage, cause I couldn't believe they thought nothing was wrong with me. The psoriasis was practically all over my face , How would they expect me to work at a fast food place, when everyone food would be full of flakes, and How can they expect me to work in public at an office with practically everyone saying yuk what happened and discusted to even recieve a paper from me . I MEAN I WAS HURT......
well to what I was getting at before I began to get upset as I wrote , is that I missed out on the part for the appeal.

but I'll be going back to apply again for my p and pa

I hope everyone that is applying for this assistance is accepted, It is a great help for medical expenses, You won't have to pay a penny cause medicaid will pay for it all , and then hopefully it would be easier to manage your p.

best of luck to you all,

PS: sorry that I had to get upset
your friend
mildred

[slowe]

Sue, How long did it take to get approved from the time you filed your application? I am just wondering how long it takes when there aren't appeals, etc.

thanks
MK
It took 6 months for them to approve me. You have to be out of work for a minimum of 5 months before they'll even consider approving you, at least that's what they told me.

[patti2957]

It took 6 months for them to approve me. You have to be out of work for a minimum of 5 months before they'll even consider approving you, at least that's what they told me.

I don't want to pry, but I wonder what additional health problems you have... I'm considering applying, and I have been paying disability insurance for a number of years now - surely that has to help???

Every time I try to go back to work I get sick, flare, have to go back home... I wonder how sick is sick enough?? I haven't worked regularly since 2004...

MK - sent you an email asking these questions.

thanks,
patti

[Angie12970]

I applied for disability for my pa and p almost two years ago and was denied two times. i go to court March 7, 2007 for the final appeal to a law judge. i was told i was denied because of my age, i am 37 now. my p and pa is severe. i have pa in my hands, feet, hips, knees and ribs. my p is on my hands, feet and scalp. i have a few random spots on my back, thighs and armpits and every now and then i will have a flare "private area". i was told by my attorney that the laws are changing regarding social security disability and that if you are denied one time and you appeal then the next step will be to go before the law judge, it cuts out that second appeal process. maybe that will make it a faster and easier process for everyone who applies.

[web63]

Oh Well....... I might as well stick my big toe in to see how the water is :-)
My last several Dr. appts have had my Rheumy telling me " you should go out on disability". I have always told him I would not go out until I could not push my wheelchair. Well, it is looking like it may be a bit before that.
My only fears of going out are:
1. If I get to feeling better after a year or 2, there is no way I would ever get a decent job again (gotta remember that one!!!)
2. Again, if I get to feeling better, and go off of disability, then a year or so later need to go back, NO WAY!!!!!!!!!!! to get back on it again.
These are 2 very serious situations for me.
My regular physician has also suggested me getting my Left hip replaced :-(

Thanks,

[ouchyk]

http://www.psoriasis.org/forum/showthread.php?p=274791#post274791

[slowe]

I don't want to pry, but I wonder what additional health problems you have... I'm considering applying, and I have been paying disability insurance for a number of years now - surely that has to help???

Every time I try to go back to work I get sick, flare, have to go back home... I wonder how sick is sick enough?? I haven't worked regularly since 2004...

MK - sent you an email asking these questions.

thanks,
patti
Sorry Patti, I haven't been around in a while and just saw your question. I have:
Fibromyalgia, insomnia, chronic fatigue syndrome, lower back pain, extensive severe p, pa in my fingers and toes, osteoarthritis in my knees, ankylosing spondylitis (that's when the vertebrae in your spine fuse together), chronic tension migraines, trigeminal neuralgia, TMJ disease, costochondritis, borderline lupus, colitis, ibs, and depression. And I just recently found out from a MRI of my head I had recently that I have an angioma (a noncancerous brain tumor made of of small blood vessels that seep blood back into the brain causing MS like symptoms. I had to have the mri because of the symptoms I've been having and my docs thought I might have MS (short term memory loss, muscle weakness and limb heaviness) I also found out thanks to my dh's niece that it could either rupture causing either death or coma, or it could turn cancerous.

Mind you, I'm only 40 and I have all this wrong with me. I think the people at social security took one look at the list of things wrong with me and just approved me without any problems. :eek:

[patti2957]

After a phone interview, a rep at Binder & Binder told me I fit the criteria, that they will be contacting me in a day or two to start the process (ordeal?)

I have a short-term disability insurance policy - 5 years I think - that might be easier to get started with, but I wonder if having a private policy is a no-no, or deterrent to getting social security...

Anybody know?

thanks,

patti

[Glennmaroney]

Well I have applied for disability through the VA. Being in the Air Force for 13 plus years I thought it might be a little eaiser to "get in" and with the VA they have degrees of Disability where with Social Security it's either 100% or nothing. I am working on my packet to return to them now and I am stuck on my Disertation on why I think I am disabled. Just a bit of brain fog I hope. At any rate lets keep this thread going and keep all of us posted on your progress. Good luck and my rayers are with you all.

[MrsPriz]

This is something I am really hoping I don't have to deal with. My sister broke her back several years ago - snapped the cartilidge between her 4th and 5th lumbar. She could walk - but was in so much pain. After years of trying to *deal* with it and beginning re-training for a job less physical she got to the point she couldn't do any more. Sitting - standing - walking - lying down - any position for more than 20 min or so and she was in pain. She applied ofr disability and was denied - appealed and was denied (oh - she had already had two back surgeries and they were wanting to do a third) - finally applied again and was approved. Not for her physical condition - no - for her mental condition which was directly related to her physical condition. She had been diagnosed as bi-polar.

Unfortunatly it is easier to get disability if you are mental - a drug user or an alcoholic than if you are under 40 and have medical conditions. :rolleyes:

I have been keeping a good log of everything because of my Enbrel issues, so if I do ever get to that point I guess I will be somewhat prepared. How do they expect you to manage your financial life if you have to be out of work for 5 months at 50% pay (my work's LTD) and then it can still take months for approval? At that point I would most likely lose my house! One good thing for my sister - and I assume this is still the case - they did back pay her from the date she initially applied.

Good luck to you all.

~Debbi

[patti2957]

Well I have applied for disability through the VA. Being in the Air Force for 13 plus years I thought it might be a little eaiser to "get in" and with the VA they have degrees of Disability where with Social Security it's either 100% or nothing. I am working on my packet to return to them now and I am stuck on my Disertation on why I think I am disabled. Just a bit of brain fog I hope. At any rate lets keep this thread going and keep all of us posted on your progress. Good luck and my rayers are with you all.

Glenn - Let us know how you do with the VA. I like Philippians 4:4 too :)

Debbi - I have heard so many horror stories... I'll keep posting on here in case anybody else needs the info. Promises to be an interesting process?

patti

[docmks]

I don't want to pry, but I wonder what additional health problems you have... I'm considering applying, and I have been paying disability insurance for a number of years now - surely that has to help???

Every time I try to go back to work I get sick, flare, have to go back home... I wonder how sick is sick enough?? I haven't worked regularly since 2004...

MK - sent you an email asking these questions.

thanks,
patti

Hi Patti, I am sorry that it took me so long to get back to you!.

I am glad you called Binder and BInder. They do good work for people. They are currently working with me to get my social security disability filed. This involves them sending out inquiries to all of my doctors (or at least many of them) and then they look them over to see if it will support my case. They review every single thing before it goes on to SSD. They generally do not want you talking yourself to people at SSD, which is fine with me. They do all the work of collecting records, etc., and that is really important support.

I have multiple conditions...PA, Chronic fatigue, fibromyalgia, migraines, P, major depression. I can't do stress anymore period. SSD has to be convinced that you can't work an 8 hour day, among other things. Multiple conditions help with disability applications, on the whole.

Having a private policy helps, rather than hurts, in my opinion, though it varies how it works with SSD. I have long term disability as a state employee, plus a supplementary disability insurance policy, plus I am applying for SSD. It is an expectation that I will apply for SSD since I am applying for Long term disability with the state. How it works with me, is that there is a cap on the percentage of my salary that I can make on disability. So my private insurance and my state disability will limit their contributions once SSD kicks in so that I only make 66% of my salary. I am not complaining, just trying to explain how private policies sometimes work with SSD.

It is a long process, even when it goes well. And you need to be organized. Keep up with what forms you've sent in and keep up with whether your doctors have responded or not. SOmetimes, your doctor/or physician's assistant or nurse practioner will want to see you while they fill out all or part of the form. It's really important to have supportive doctors.

Sorry it has taken me so long to respond. I've had several things going on, and I had to fly back to Boulder recently for a memorial service. But I'm back, now, currently in washington state.

Best, MK

[Kimbercat]

I thought I'd just throw in a few of the things that I've been learning along the way of this process. I also had a long term disability insurance policy through my former employer. Even with the backing from my doctor and good documentation of the numerous health issues I deal with, I was denied. I appealed and was again denied. Unfortunately, this agency had a policy of only allowing 1 appeal.

As NPFLaura stated in her earlier post: "Usually employment disability offsets social security if you receive both." From my understanding of the LTD policy, one of the requirements was to "pursue any other avenues of possible income", which included applying for SSD. If the SSD was approved, the long term disability would be adjusted by the amount of SSD income, and the difference between the two would be paid by the LTD policy. I hope that this doesn't confuse anyone even further. As an example:
My LTD policy would have paid 67% of my salary at the time that I left employment. If my monthly salary had been $2,000, my monthly disability payment would have been $1,340. Then later, if SSD was approved for $800 per month, the monthly LTD amount of $1,340 would be reduced by the SSD benefit amount of $800, and LTD would pay the difference of $540.

My guess would be that most LTD insurance companies are similar, but be sure to read the fine print on your policy. Several people have mentioned 2 things that I've been advised by my attorney are very important:

Any contact with SSD needs to be referred to your attorney to handle. This can help prevent something you say being misinterpreted and used against you later.
If you are dealing with any kind of depression, anxiety, or any mental or emotional issues, it's very important to have this documented by a mental health professional. Apparently SSD looks closely at this area.


As Mary Kay (docmks) and several others have stated, I believe having multiple conditions contributing to your disability would help your case. Be sure that they are all well documented by your doctors and in your notes. I think that it really helps for all of us to share our experiences.

........to be continued......

[Momelie]

Just an FYI update on my SSDI saga:

After filling out my 10 page questionnaire, I was referred to an independent doctor last week for an examination. He filled out the online form while I was there, so I guess now I just wait.

Has anybody else had to see a doctor in their first go-round? My sister (who works for the VA) said she had never heard of it at the first level, only after a denial.

Anyway, I did worse than I thought during the exam - I didn't realize just how much the PA had affected my balance and agility, probably because I just don't move that way anymore since it hurts! I was completely unable to balance on one leg, and had to hold onto the walls to attempt the toe and heel walking. He was doing the ROM on my shoulder and it protested loudly, with a huge crack, it was kind of funny!

I was NOT impressed (try horrified) at the clinic they sent me to. It was literally in the WORST area of my town, to the point that DH was about to hire an off-duty police officer to accompany me, but instead he wound up taking off work to go with me. I had to enter the place through a Cuban fish market, it was located off the fish market's back room, and had a hand printed piece of construction paper on the door advertising immigration physicals (in both French and Spanish). NOBODY spoke English, until I got to the doctor himself, who was Jamaican. Thankfully, I do speak a limited amount of "Spanglish", enough to get the counter people at the fish market to tell me where the clinic was, and get the papers filled out. The first guy that took me back kept talking about my "sucre" and that he could cure me - I finally figured out that he wanted to cure my diabetes by taking Jamaican herbs and cutting out carbs. And that pretty much set the tone for the whole thing, LOL!

Now I guess I'm just waiting for a determination. I have no idea what happens next or what the timeline is. DH and I have decided that if we get a denial, then we hire an attorney after this initial round.

If anybody else has any experience/opinions on what's next, I'd really like to hear from you.

[Glennmaroney]

Well after several visits to the VA hospital for xrays and different tests they approved me for 20%, 10% for my left ankle and 10% for my SI joint. They did tell me I have moderiate to severe Arthritis in most all my joints, however since I only complained about the two joints while in the military that was all they could approve me for. The good news is that will pay for my Dr. co-pays and a med or three every month and when I get SSD they do not count VAD as income. Every little bit helps

[Ihurt]

Are there any on here who have had to go on Disability because of PA. I,m only two months in and not ready to give up yet but I like to educated as much as possible so I can make the best decessions for me. I have been out of work since Oct 30th and the MTX has not started to kick in yet but I am only on 10 mg, third dose Thursday. I go back to my dr. the 20th and he said if I wasn't better he would up it. I am having to tread lightly with all my other medical problems.
If there are others on Disability, how long a process was it, ect?


I went on disability in 2004. I got diability for PA and the associated depression that comes with the disease. I did not have a problem getting it because I sought the aid of a Congressman's office. As I said in another post, every congressional office has a liason for SSI and SSDI. They can actually assist you in the process., and I don't think SSI likes to be "overseen" by a congressional office. I had absolutely no problem.

They had records from all my docs and only asked that I see their psychiatrist. I did, and he wrote a wonderful report. Like I said, no problem. I filed in Sept of 03 and got approved in March 04.

[elveeh]

I highly recommend this book as a reliable, thorough resource for info on disability insurance, whether private, employer-provided, or SSDI/SSI benefits:

"Persistence is Power! A Real-World Guide for the Newly Disabled Employee"
by Jeanne Lazo & Carol J. Amato.
Paperback
Published 2004 by Stargazer (www.stargazerpub.com)
ISBN 0-9713756-0-7
$34.95 new; much lower if used.

Hint: Search for used copies at the major online booksellers.

Don't let the "newly disabled" part throw you because there's plenty of information even the long disabled can use. The book is packed with info, guides you through the jargon, and clearly prepares you for the twists and turns in the process.

(FYI -- If you paid premiums for your Long-term Disability coverage in after-tax dollars, you probably won't have to pay taxes on the Long-term disability benes you receive. So, if yr Long-term Disability benes are about 60% of your salary and are non-taxable, then your benes about the same as your salary after taxes. And that's not so bad! Just be sure to you check with tax expert about the tax status of yr benes.)

[homeland1]

Yes...on my first shot...unfortunately and I guess fortunately. You must be disabled to at least 6 months. Generally you should be disabled for at least one year. I am a retired doctor and testified for over 500 disabled individuals both for and against. There is some logic to their madness. remember you have to be totally disabled from any gainful employment. There is a specific way to fill out all forms. This is true with private carriers as well. I have been on SS disability for approx. 7 years. I also collected the max. as did my kids when they were under 16. In addition, you get medicare for life after a period of time. It is very difficult to help with blogs!!!!!!!!!!!!!!!!!!!!!!!!

[DEBAK]

all the TV ads here the law firms wont take you until you have received your first denial from social security. To go to the local SS office here is a nightmare and an all day wait. I did my application on line in Indiana and it went through very quickly. Just be sure to keep good records of every dr appt., treatment change and response to the treatment, freq. of flares. I developed a 30 step checklist where I rate my symptoms on a scale of 1 to 10 daily for documentation.

[sandibg]

I used to repair copy/fax equipment for a living. I used to tape my hands together with steri-strips. When I first started having joint problems I missed a lot of work and because I had no diagnosis at that time; I lost my job. I took a year off and lived off my savings. My joints got better for a time and I took a desk job for a credit card company. Within 3 months my back flared again and I was unable to sit, stand, walk or lie down without intense pain.

When I had to go on emergency leave because of my back, I found a Disability Advocate group called Allsup. (Allsup.com) My doctors had determined my disease (PA/ AS) but could not give me a prognosis. The first thing they (Drs) wanted to do was put me on Mtx and Enbrel. When they told me it could be 3 to 6 months before I MIGHT see any improvement, I called Allsup and got the ball roilling for my disability claim. My thoughts were: If the Enbrel works I can always withdraw my claim and if it fails I don't have to wait an additional 3 to 6 months for benefits.

Because of Allsup, letters from my doctors and the info pack (from this site) I included in my application, I was approved the first time through. I LOVE Allsup! They made the application process completely painless.

1) I did everything over the phone and by mail.
2) I never had to see a govt doctor. They worked with my established docs.
3) An update on my claim was as easy as making a phonecall.
4) I never dealt with Soc Sec directly. Any correspondence I recieved was routed through Allsup.
5) Like all other advocate groups, they charged 25% of my first pay out as their fee.

It was worth it. I would encourage anyone fighting with SocSec to give them a call. They were a Godsend to me.

What have you got to lose?

Sandi

[cflame]

Hi ~

I've read about Binder & Binder and Allsup from the threads here however was referred to a local nonprofit group who will evaluate whether I would be a candidate for disability for free and they assist in applying for free. The rep told me on the phone that everyone gets turned down once and has to appeal. Well, I can see that is not the case when reading these threads. I'm wondering if it's because of the person's disability or who they used for assistance in applying?? Any feedback would be great. I have PsA, fibro, depression/anxiety, migraines, IBS and possible lupus...doc needs to monitor bloodwork for a while.

I could have sworn the rep said the less you've seen drs the better...??!!?? I have an appt with a rep at the local nonprofit on 9/15 and it should be interesting as she has never heard of psoriatic arthritis. I guess I can go and see what they say at the very least and then determine whether to apply and who to go with.

My situation is this.....I have gotten progressively worse since my initial diagnosis in 2002 which led my rheumy to test for lupus in 2005. The ANA was positive however he thought this was brought about by asulfazine(sp) so switched me to other medications. I then moved to New Mexico and didn't follow up with a rheumy here until I was employed and had insurance. That rheumy did bloodwork, not sure what all he did, but said the findings were all normal and to stop my medications such as imuran, plaquenil, lodine, prednisone etc. and referred me to pain & spine doc. He prescribed to switch from Zoloft to Cymbalta and we tried Celebrex and some others which I couldn't tolerate. Employment came and went but I still saw the pain & spine doc as much as I could with no insurance etc. So I spent 2 years on Cymbalta and pain meds basically. It got really bad.......I lost another job due to limitations and booked with a rheumy from this site. Of course by the time I could get in for the first appt, I was no longer employed with insurance...... She has started me on MTX and was going to start Humira....I was so thrilled as I've heard people say it gave them their life back...unfortunately I tested positive for ANA again so can not go on biologics...sigh. So, I'm in my almost 4th month of unemployment and 7th week of MTX and don't see that I will improve soon enough to try the full time employment thing again.....this is why I am considering disability. I am also trying to determine a career field to train in for future employment...don't know what to do there......:confused: I'm not in a very good place right now.

Anyhoo, sorry for the long post. I have journaled some with regard to when I started meds and how I feel.

Should I be keeping a daily log? If so, DEBAK, could you post/type your checklist for reference?? I would greatly appreciate it.

I realize each of us is unique, but thoughts and feedback are greatly appreciated.

Christa

[wildflowerAnn]

Hi Christa,

I am not on Social Security Disability, but I have been through the process of applying for private insurer disability. Here are some things that I think will be helpful for this long, exhausting process.

1. Purchase some 3 ring binders and tab dividers.

You should keep copies of all medical visits, prescriptions filled, treatments tried, etc. by month. Go back if you have kept the records and get it chronologically organized. By doing this, you can show that all medical treatments that you are able to try have not put the disease into remission, and they have not controlled the flaring enough to prevent chronic pain. It is important to state that there is no cure, and a treatment may work for awhile, and then fail. The person deciding your case needs to know that it isn't a matter of just taking a different medication and everything will be okay again. For you, biologics aren't an option and there isn't anything but Mtx which may or may not work.

2. Type out a complete answer to these questions:

FULLY describe your disease. State where your inflammation occurs and explain the severity. Don't hold back. Detail the progress of your PsA.

Describe how your disease interferes with performance at work, or your attendance at work. If you can remember, note all of the attendance issues at your prior jobs that caused you to have to leave work. Attendance is a key factor. If you can't show up for work because of pain from the flaring, then you can't keep a job. Put your work attendance history in a binder, and keep a complete log of sick days to show how often you have had severe flares. Describe any performance limitations. Are you unable to sit or stand for an extended period? Do you have full use of your hands? Are there limits with lifting and carrying? Etc. List everything that is a problem.

Describe how your disease affects your personal life. Do you need to hire help? Are you limited in the types of housework that you can do because of joint pain? How long can you sit, stand, etc.

3. I think your physicians need to be in agreement with you that the disease has progressed to the point of not being able to hold a job. They will prepare letters for you, explaining your disease and the fact that all available treatments have failed to provide you with adequate relief.

You need to organize your records, and prepare statements in advance that detail everything about your disease and how it has impacted your life, so that you can present your case in the most effective manner. I have some PsA and know that it feels like a knife is in the joint when it flares, but the person deciding your case won't know that and won't be able to see your pain. Unlike skin disease, it isn't so visible. So you need to be able to describe how you feel in a manner that enables them to understand.

Start the process now. If you are fortunate, and the Mtx begins to work, you can withdraw from the process. It takes about 2 years with Social Security, so its better to get the application in the system sooner than later. Don't be put off by an initial denial, if that happens. It seems that they rubber stamp "NO" most of the time. The New York Times had an article about this, and how discouraging it was to very ill people. Hopefully, your attorney will be able to give you emotional support as well as guidance about the application and getting through the hearings.

I'm sorry that your treatment options are so limited and this has happened to you.

Take care.

Ann

[cflame]

Hi Ann,

Thank you so much! Your information is exactly what I was looking for, how to go about documenting the information and what to include. I have all the visits and meds, however, didn't realize the attendance was a key due to health issues. That's why I lost the previous two jobs.

I will of course request the packet from NPF to include.

I really appreciate your taking the time to respond. I feel very fortunate to have found this site/board which allows me connect with folks as wonderful, caring and knowledgable as you.

All the best,
Christa

[enshock]

Can someone tell me what to do in this situation? I have not been to my rheumatologist in about 10 months due to no insurance. I am submitting my disability paperwork and called her nurse to get a letter from her. She said the Dr would not send one because she had not seen me in some time and the last time she did see me I was fine. I explained I probably was better off then than now because I was on medication and that I had not been "fine" since I was diagnosed with PA. It has always been a series of meds, flare ups, more meds, now no insurance and constant flare ups. If she won't comply do I have a chance of getting SSD?

[cflame]

Anyone have this happen? My rheumy, which is new to me, won't write a letter. She said she will provide all medical records and fill out forms but won't write a letter. I had to have a form for Division of Rehabilitation Vocation Department to determine egibility and she put that I can't work so....

I'm still forging ahead with my application. I have an appt at SS on 10/2/08 for initial intake.

[wildflowerAnn]

I don't think Social Security requires a letter. I had to have letters (statements) for private disability insurance. The fact that your rheumatologist noted on the form that you CANNOT work is very supportive of your disability claim. Good for you. That is one less battle. :)

Enshock,
If you can swing it financially, it would be better to be examined by your rheumatologist and have that in your records. I know rheumatologist appointments are extremely expensive. Hope you can work this out.