Disaibility application any advice would be nice .

[CJ]

Hello ,

Thanks for your time. I am in process of trying to get my disability. I was just sent a form and they want me to tell them what and how many times a day I feel the symptoms of my PA. The prob is that now that I am on Remicade I feel fine. I still get fatigue and some pain but not anything like I use to before I started taking Remicade. So I know that with out the remicade which is about $2500 per injection that the pain and all that fun stuff will start back up. With out Disibility I will not be able to afford the remicade . Last time I filed I was denied they said it was not that I did not have PA but that I did not meet their req for Disibility and that in the future I might . So What do you do just sit around and wait till your joints fuse and your in a wheel chair. I say no I want to be able to function and work and support myself but how do you afford a med you cant afford which seems to be the only medication that works and be a productive member of society. I am sure many People are taking a walk in my shoes. I understand and feel for each one of you. I do not have an answer to my question and maby someone out there that has all ready been through App for Disaibility /Medication / Job vS Expense and how to get those to work hand in hand might be able to shed some light on this subject for the many of us who feel lost and in Dispare. Be strong and never give up. Peace of mind and Positive thoughts to you my friend.

Sincerely

CJ

[Myha]

I have had p for 3 years and feel for anyone with this disease. My brother has been trying to get disability for different reasons but it is a long road and the government will take you thru all kinds of stuff. It has been 3 years now that he has been going back and forth. We hope to finally hear next month a good response. I know you should go to the local free clinic and keep going. Have them send you to all different test and make sure that you go to all the appointments. It is a long road and gets depressing. Hopefully if you start with a clinic and get the social worker to help you. Have the social worker write and fill out the forms from Social Security, they know more of what is the correct wording. I am not sure what is best work or not but try to get the help of a local free clinic staff and I feel it could work out for you.

Take care Myha

[nuttydenise]

a friend of mine had to use a lawyer. She has RA. I expect the same for us with PA. Keep good records even daily logs and how do you feel just before the remicade infusion.
Good Luck
Denise

[shawgirl]

Hey CJ,

I applied for SS Disability in February. There is a five month waiting period before anything can be decided. My five months were up two days ago. I am trying to keep my hopes up because there is no way that I can continue to work. I have p and pa very bad on my hands and feet. Also, other medical factors are included with my application also. The medication for the pa the doctor gave me is Bextra 20mg once a day. It helps some for the swelling but the pain is still there. That medication in itself cost about $100 but not near as much as your injection cost...WOW! I heard that I should keep in my mind that the process can be long to be approved. Most of the time, appeals must happen. But I am not going to dwell on that right now. Hang in there and keep in touch. Gloria

[EdR]

CJ,

The NPF has or at least used to have materials providing information on how to prepare a disability claim based on psoriasis and/or psoriatic arthritis. You may want to give them a call or email.

Good luck,

EdR

[mrwood]

Gloria,
I to have p on my hands and feet and there is no way I can work. I have applied for my disability. The lawyer told me they have 3 months to deny or approve. My 3 months will be up next week. Please post on here or e-mail me and let me know how it comes out. I feel like PJ, I cannot work to pay for the medicines because of the P but if I had the meds I might feel a whole lot better. Now my p has gotten so that when my hands are even remotely clear my feet break out so bad that it is unbareable to walk. For some reason tho my thumbs and 2 of my fingers will not clear up. It is excrutiating to pull my pants down to go to the restroom. I don't know how the Gov. could expect me to hold a job! I have 4 small children that have to deal with this by pulling together and helping with chores around the house and go without because we do not have the money. All I want is to be able to take care of them. Please let me know as it will at least give me an idea as to what I can expect.
Thanks,
Melanie

[rockin]

CJ,

I've been disabled for 5 years due to a back injury. I've had severe Psoriasis for 30 years as well. I was unable to walk when the doctors made a mistake during surgery by cutting my spinal cord! Fortunatly it wasn't severed into! I was in the hospital for 30 days and lay in a hospital bed at home for 6 months. All the while being turned down for SS Disability. I hired a lawyer and finally got aproved but it took 1 1/2 to get compensated. The lawyer took 25% of my much needed money, but it was worth it. SSD does not pay for medications though, unless they are given at a hospital of Doctors office. I suggest calling the manufacturer of your medication and see if they have a program to help you. Most of them do have special programs. I use them for my meds. They require proof of income and a note from your Doctor but you might end up getting them free! You can try www.needymeds.com for more info. Good Luck!

[shawgirl]

Hey Melanie, I am still trying to be optimistic and hoping to be approved the first time. It is so weird that some cases are approved right off the bat and others must appeal and get a lawyer. I will keep you posted on my progress and also keep you in my prayers as you and others deal with the awful pain that we endure. One thing that I did express on my application for SSD is not just what I am applying for but how it effects my everyday life and my inability to work. When I did work, I missed many days due to psoriasis, psoriatic arthritis and other medical reasons. I kept records of the days I missed or when I had to leave to come home early, for the past year or two because of my problems and also kept copies of doctor excuses that I had to turn in. Hopefully that will help a little better in making SSD make a decision sooner?? We shall see. One major thing that decreased in my job duties was my ability to type. A few years ago, even with psoriasis (when it was not as bad), I could type 86 wpm, now it is down to about 10...big change. It also takes me so much longer to write, much less hold a pencil or pen very long before I drop it. Just some examples of what I described on my application. Take care and I will keep in touch. Gloria

[mrwood]

Thanks Gloria, I hope to hear good news from ya!
Melanie

[Sunglow21]

Hey girl! I know exactly what you are going through. I applied for SSDI on July 5 and was told I would hear something by the end of september. waiting is horrible, not knowing is even worse. I too take remicade but I get it free from the company. My rheumy is working with me to try and get me all that I need. I also am trying to work through voc rehab who will help pay my medical expenses and gym membership so that I can start physical therapy. Plus voc rehab will help with tuition so I can get another degree that I will eventually be able to do work with , even from at home. I don't feel like typing much at the moment but please write me back. I am 25 have had p since age 7 pa since 15 (unofficially) and officially dxed at age 23. Hope to hear from you soon. take care.
hugs,
ali

PS your email address was not working, I hope that you see this message and write back to me.

[DEBAK]

Hello to all of you, I was very fortunate in getting my disability approved the first time around. That does not however give you insurance to pay for meds. I am currently on COBRA from my previous employment and when that runs out I will have a 6 month gap before I can go on Medicare so that will be 6 months off treatment. My remicade costs nearly 5,000.00 a pop every 5 weeks. You will also be requested to have an exam/eval by a Social Security Doctor who will send a report to them. When you get up tomorrow do a log sheet of every activity you do from bathing and dressing to housework and describe IN DETAIL what difficulties you have with them..the more details the better.
The web site you go to is: http://www.socialsecurity.gov/onlineservices/. you must complete all the answers. Be prepared to provide a list of all Dr's. you have seen and when and for what purpose. All med's you take and for what purpose.At some point after you complete the computer portion you will need to take some papers down to your local social security office so they can look at and verify them...they will let you know which ones. Be VERY SPECIFIC in what you can and can not do. For example I took every area of my body that is affected by psoriasis and told them what it prevented me from doing. I have severe Psoriasis on my hands and feet, for my feet I can only tolerate to walk a few feet at a time, I can not tolerate to wear shoes, if I sit with them down for more than an hour they swell up. My hands I can not tolerate to touch any paper or metal, I can only wash them enough to maintain basic hygiene ( for me is a problem as I am a nurse and can not wash them the number of times a day it takes to do my job). Give them something that is measurable...rate your pain on a scale of 1 to 10 with 1 being the least and 10 the worst, tell them how long it takes you to be able to function in the morning when you get up, what your pain prevents you from doing. Hopefully you have been seeing Doctors on a regular basis as they will be contacting all your doctors for info from your chart to verify your complaints.
Be sure to print out every page you complete and start a notebook to keep all these things in...if they approve you they will put you into a classification as to when they will next review your case, for me I am in the not likely to improve class and they will not review mine for 5 to 7 years. Be sure to keep a log of every Dr appt. from now on, what you saw them for and if any med or treatment changes were done.
If you are denied by soc sec you can then take you case to a lawyer..but be sure to do it within the time frame of appeal they give you. The lawyers fee is usually taken from the back pay you receive from social security if the lawyer is able to get you approved.
I devised a 30 point flow sheet/checklist of all my different problems and rate them on a 1 to 10 scale twice a day as my skin can change that fast. I will try to attach it to give you an idea. That way when time for review comes you will have the documentation to send them as to your quality of life and ongoing problems. As a courtesy tell your Doctors you are applying for disability so they will be prepared when they are requested to send them information.
Hope this helps, let me know if you have other questions and I will try to help. Deb

[cflame]

and just received a packet back from them with the doctor files that I provided at the initial interview. Has anyone had that happen?? I thought it was beneficial to provide any records you have....??

Christa

[mary j]

I too have been in the SSDI hole for quite some time my last day worked was in may 05. I have been before the alj who found me disabled. My atty is trying to get back pay for the year preceeding my last day worked because I was off a lot. Hearing in Sept where judge said disabled but have to wait for letter SS says may be feb before that comes then may take additional 2-4 months for money. So hang in there this can be a long and very very slow process

[jfj]

After dealing with my husbands disability process my advice is get a lawyer. You can do it on your own but they know how to word things for social security. Be ready for a long wait. It took us two and a half years to get his. He got his first check in October and we are still waiting on the backpay. As for paying for meds and medical bills you have to be approved and wait 2 years. In our case he got his medicare immediately because they approved him from his appilcation date in 2006. Good luck with your claim.

[KenoKaren]

Hi Everyone,

I just joined here today and wanted to share some information with you that will help.

Although I finally got my SSD after 5 years of fighting for it. Not because I had "P" at the time but, for other injuries from an auto accident.

I would like to add....And believe me this is VERY important...The first time that YOU go in front of the Adminstrative Law Judge (ALJ) EVEN if YOU have an Attorney...take YOUR family doctor with you. Why, because your family doctor knows you and your illnesses.

I speak from EXPERIENCE here...I to had an Attorney and for 5 yrs. he NEVER once told me or suggested that my family doctor go with us...well, I fired my Attorney and finished the process myself and had my family doctor go in front of the ALJ with me... My doctor was asked questions, gave answers and also told the ALJ that he also felt that I should have received my disability years ago.

I was thrilled when I received my Determination Letter a month or so later that I was APPROVED...Also, that they were going back 5 years and awarding me it form when I'd origionally filed! WOOOOHOOOOO

I'm NOT saying that ALL Attorneys are jerks like the one I had....BUT....they work for YOU! And YOU have the right to tell them that YOU want YOUR doctor to go with you the FIRST time that you appear before the ALJ...

Just my 2 cents...

Karen