Disability questions

[Sunglow21]

If anyone has filed for disability or is in the process I would love to find out how that is going. I am 25 and considering it although I don't know how I would pay my bills or "survive" financially during the waiting period. Does anyone know the guide lines on filing with psa? Do they take in account remissions? Such as the possibility that you could be in remission during a consult with a doctor that they select so they don't believe you even though it can flare up at any given time and make it almost impossible to walk? I would love to hear any and all advice on this topic. Feel free to contact me at sunglow21@aol.com

Thanks,
Ali

[rhop]

Dear Ali - I'm not in your age group, but I have experienced what you are going through. I am 52 yrs. old, and was just granted Soc.Sec. disability in December. The process took a year, and was unbelievably stressful. Here's the bad news: They turn down 75% of applications. At your age I would think it is nearly impossible. At 52, I had same conditions as you, PLUS insulin dependent diabetes and fibromyalgia, which rendered me barely able to walk, unable to use my hands to grasp, but as you say, it comes and goes. The psychologist they sent me to saw me for one hr., and without ever seeing my 12 yr. medical charts with a rheumatologist, my 40-50% skin coverage of cracking, bleeding, flaking, itching p., he concluded that I wasn't exhibiting any pain posturing, just "stiffness", while he questioned me, and determined that I "over elaborated" my medical conditions, was "histrionic" for describing this disease as "creeping crud" and "devastating to my life", and that my problems were primarily psychological!!! Fortunately for my application process, 3 months later when they sent me to yet another MD, an occupational health specialist, I was barely able to hobble, my feet were so bad, and was unable to make a grip with either hand, and was having trouble with my knees, hips, ankles, elbows, and all 20 digits. Even then, it was only the xrays of the cervical spine showing extensive damage, which could account for the hands and arms going numb, or tingling and burning as if "asleep", that finally got my approval of disability. I have heard of many people much worse off than me who were denied at first. And even then, you are required to wait 2 yrs. to be placed on Medicare for insurance, and the amount of monthly disability payment is not anywhere near enough to live on - mine is about $800 per mo., and I was an RN for 12 yrs. At your age, unless you were bringing down BIG bucks, your monthly award would be less than $500, in all likelihood. So, as you can see, trying to get on disability should be the LAST thing you are thinking about!!

Now for the good news: At your age, you can look forward to having your disease process controlled and possibly even CURED, by all the new treatments and medications out there and coming up the pipeline. I have also been without medical insurance for periods of time, including now, because I have to wait another year to get Medicare. But you need to get to your rheumatologist and ask for all their information on drug trials you might be eligible for, drug companies' indigent programs, getting samples of meds from your doc, and getting on methotrexate or some of the other new treatments. Also, NPF will send you all sorts of pamphlets to educate yourself. This requires you to be proactive, developing a good communication with your medical providers so they think of you when they have samples, or hear of trials going on. Isolating yourself in your home and your bed is never going to make this thing get better - although I have been there and felt that way, where you just want to cocoon, pull up the covers, and hide from this unfair world and stop hurting. One of the best things you can do for yourself is talk to a counsellor who has experience with chronic illness - your doc can recommend one. Many of us have experienced what you are currently going through, and if you don't mind my saying so, what helped many of us is to be put on an antidepressant. It is NATURAL to be depressed as a result of feeling like @%$&**@% all the time, but you have to take the bull by the horns and DO something about it, or else give up and stay in bed. There isn't a medical center around who won't find samples for you, and if you are so broke that you can't afford ANY meds, then you qualify for public assistance. I don't know what state you live in, but you need to do your research, talk to your medical providers at length, and if they are insensitive to your needs, go to different ones. Help IS out there - but you have to be willing to do your part - no one is going to come find you in your bed and pull you up. Unfortunately, we have to do that by our own bootstraps - I can tell you that I have had to go without a lot of other things, such as t.v., long distance, eating out, new clothes, travel, new vehicles,etc., at times, in order to pay for my meds and my lab tests, and my docs have been MOST patient about having their bills paid on time, but if you are proactive and fighting for your own health, you will find answers, meds, and support.

I'm sorry this is so long, and may not be what you want to hear, but those of us who have "been there, done that" can only advise you of what has worked. If you feel completely overwhelmed or unable to tackle this, you need to find local support through your medical center, medical social workers who know the system and the resources, the mental health dept., and your own doctors and nurses. Hang in there - WE ARE ALL HERE FOR YOU, as well, but there is a lot more help out there locally for you when you seek it out. Keep us posted on how you are feeling, and if any progress is made in finding resources to help you out. Love ya, Rosemary

[CJ]

Whooo hoo I agree with Rose I think she deserves an Oscar for that wonderful bit of advice. I applied for SS but was turned down I can appeal but I will prob choose to try and find a job that will allow me to pay my bills. I am sure I will need SS later on but It will all depend what type of job I find and how flexable they are. I have P and PA and I am 32 and I have the ups and downs. Your best bet is to try and find a job that will allow you to pay your bills and that has good insurance. I am trying to apply for a job with a big Oil company. You can also try to go for City or county jobs and Humm maby even state dor gov jobs ... I wish you the best of luck and keep your chin up we are all here for one another. Sometimes it helps to know that otheres are or have gone through what we are going through and I can only hope that there will be a cure for P and PA one day.

Peace and Positive Thoughts

C.J.

[wildflowerAnn]

I agree with Rose and CJ. While I was so sick, my boss made me request the information for disability retirement because she was worried about me taking sick leave during flares and not helping her meet her group efficiency goals, thus reducing her year end bonus. I work for the federal government. I had to read multiple books and look at the Social Security website to learn all the requirements. The disability route is a trap. If you are in a terrible flare that can't be controlled, then you might meet the requirements after doing all of the paperwork and going to meetings as Rose described; and spending a fortune on physician fees and legal fees. Then, if you go into remission, you're given one year to find a job and you lose your disability. Social Security is even worse. If you can do any type of work, you won't get it and they put you through torture to even apply. Federal employment offers health insurance without limits on preexisting conditions. If you have flares, they have to accomodate you with sick leave or leave without pay during these times, and they can't fire you for being sick or force you to retire. In fact, if you can't walk, then they have to accomodate you while you need a wheelchair and give you work with comparable grade level and pay until you recooperate. I would go to USA.gov and look for a federal job. You have plenty of protection against discrimination from this illness if you work for the federal government. You aren't required to bring up the subject during an interview. If its an agency that has a government union, then the union contract provides for privacy about your illness. All your supervisor can ask for is a doctor's note that you need to be away from work if it is for more than 3 consecutive days. I don't know what your job experience is or what you have trained for, but there are many secretarial positions that are unfilled and the medical benefits and pay would be much greater than going the disability route.

[sabsmako]

Ali,

I totally understand and can relate to your pain! I'm only 21 myself and am much considering filing for disability. I live in a smaller community and there really aren't very many job opportunities around here (if any). We have several food businesses (which I can't flake in the food) or factories (which would kill me). I think that it all depends on the state you also live in. I live in Illinois and with EVERYONE no matter how bad the situation, you ALWAYS get denied the first time. To me, you really have nothing to lose in at least trying. That doesn't mean you can't continue to look for work while waiting. Just a thought?

[JodyGK]

Ann and sabsmako -- I'm not sure if you're aware, but you're responding to people who posted this thread almost four years ago, none of whom seem to have been active in this forum for quite some time.

Jody

[RichJ]

Ann and sabsmako -- I'm not sure if you're aware, but you're responding to people who posted this thread almost four years ago, none of whom seem to have been active in this forum for quite some time.

Jody
hi jody,
no wonder the names looked new to me. :eek: :eek: :eek:

have a good day my friend :D

[sabsmako]

All I said is what harm can be done in filing? What do you have to lose? That doesn't mean you can't still look for a job. If you get accepted...great! If not, sorry.

[jameymac]

so if they filed 2-3 years ago they should be recieving they're first checks about now.shame the government has no clue to what its people go through while waiting for this kind of assistance.pressure your local officials of government for more funding for psoriasis.

[ShadowThomas]

so if they filed 2-3 years ago they should be recieving they're first checks about now.shame the government has no clue to what its people go through while waiting for this kind of assistance.pressure your local officials of government for more funding for psoriasis.

Believe it or not, the government does know the hardship involved. You see the government has two speeds, *SLOW* and *SLOWER* They figure when a person gets turned down for, SSD. the person will get discouraged enough to just say the hell with the whole thing and go back to work, which saves the government money. And the government also drags this stuff out so long in hopes that the person fileing for SSD. goes back to work.
It is sad that our own government would go to great lengths to screw anyone of us out of the money that we put into the system. The bottom line here in my own opinion is this. Our government has no real use for us. They would rather p!ss the money away on pure nonsince, when that money could be better put to use for real, God honest, disabled Americans. This government makes me sick !!
When I stop and think how many billions of dollars that are spent so damn foolishly by our government each year, is sickening. Don't get me wrong, alot of that money is well spent, but when I look in my own backyard and see homeless people that are out of work and starving just makes my blood boil. And to think, our government just turns a blind eye in this country.

[slowe]

so if they filed 2-3 years ago they should be recieving they're first checks about now.
I filed for disability in May and recently found out that I was approved. I should be getting my first check at the end of December. It just depends on how severe your condition(s) are. I have many other health problems besides P & PA and I was approved the first time out. I also got my rheumy to back me up in my claim. My advice is, when you file for disability and find out who your case worker is, follow up with them. I called every 2 weeks to find out the status of my claim and also to let my case worker know my dire financial situation.

[jameymac]

shadow i agree with you on the government thing totally.they need to stop supporting their own interests and foucus on the people they are representing.
slowe it great to hear you'll get your assistance soon.i think your an exception or just lucky.my ex went over 2 years with severe pustular p. and had to get a lawyer to finally get on assistance.pretty hard to work when your feet are bleeding,but guess things are a little easier now.although having to work for over 6 months in pain is still pretty bad.i think it is anyway.when my p. got extreamely bad i went to my derm and asked her about it and she told me no one has ever recieved assistance for psoriasis.i found that to be a lie if i ever heard one.maybe she was being told to say that or something???at the time i couldn't move my arms without cracking and bleeding.thankfully my p. cleared from that area and i was able to work.still have some bad days,but not like everyday.keep clear guys,jamey.

[slowe]

Jameymac, as I said, I have many other health conditions besides P & PA and I think that's the main reason I got approved. I was expecting having to fight for it because I'm only 39. At last count I have:

Fibromyalgia
Insomnia
Chronic Fatigue syndrome
Extensive severe skin P
lower back pain
polyarthralgia
PA (fingertips & toetips)
Osteoarthritis (knees & spine)
borderline positive Lupus (I'm not fully blown Lupus at this point but I eventually will be)
multiple TMJs
costochondritis
colitis
IBS
trigeminal neuralgia
chronic tension/migraine headaches
depression (no one will treat me for it, they say I'm depressed because of the pain and if they can control the pain that'll take care of the depression. they haven't controlled the pain)
And the latest diag Anorexia because of the IBS I don't eat

I think that long list is the reason I was approved right away.

[jameymac]

wow slowe,thats a long list of things going on inside you.i know very little or nothing on half of the things you suffer from.i do know depression alot,as i think most of us do.wish i could send a truck load of happiness your way,but am running on empty right now.maybe someday ,but not today.i used to suffer from insomnia too.it would take me hours and hours to fall asleep.thank god that isn't the case anymore,else wise i'd have to goto bed right after work.stay clear,jamey

[jpierson]

Hi I am new to this but was wondering if anyone has recently been approved for SSI with Psoraisis? I applied in June and was denied but fighting it. I have had P for over 11 yrs and it is very sevre case covering over 80%. Have any suggestions on what is the best route? My case worker is very aware of the situation and seems to be fighting for me also hired an attorney to help. Any help would be appreciated now!

[RichJ]

hi jpierson,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you. more will come through and help you

have a good night all

richard

[RichJ]

hello all
can some one help this person with a ?. i would if i could. thank you

have a good night all

richard

[Ihurt]

Contact your local Congressman's office. They have a person dedicatedto handling SSDI/SSI issuesright in their office. Your will be glad you did it. I did when I was at my wits end, and I got the help I needed. I also have PA/Fibro/Depression.

Ihurt