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iseedeadmonkeys
01-16-2009, 01:45 PM
hey i got my results for my benefits, which it was a result!!! :D

works out that im entitled to the full amount of benefit for my rent i think it works out for me to pay 3.05 a week for my 1 bedroomed house, im not sure what the situ is with the tax yet but i will let you know, also the lady was telling me that im also entitled to an additional 9 a week i think its incapicity allowence?? i will have to go to jobcentre and inquire about this, well every little helps i guess, so hopefully in 2 weeks i can be sick in peace without worrying about rent and tax!!!

rob
01-16-2009, 01:58 PM
That's great news. The stress of not being able to pay the rent can put a person into a never-ending flare. I was incredibly relieved when I was approved for full Social Security Disability Benefits. It's not a huge amount, but it's enough if I stick to a tight budget.

Danica01
01-16-2009, 02:11 PM
Rob,

How long did it take you to get approved for Social Security Disability? I am starting the process but I have heard it can take up to 2 years and I just don't know how I can financially do that. I am not working and have applied for assistance with all my meds but my insurance is $500 a month and I have to pay it. I feel so lost and I feel as though life is out of control which is physically making me feel worse than I already do :cry: I am scared and lost. Do you have any advice :?: Thanks you.

Danica

rob
01-16-2009, 02:45 PM
Hi Danica,

It took me about 6 months from filing the paperwork to actually getting paid. Basically my GP and my Rheumo filled out forms saying that I have indeed been diagnosed with SLE. Then I had to see a Doctor and a shrink who work for the Social Security Administration to once again verify the diagnosis and make sure I was OK in the head. Both the Dr. and Shrink I had to see were down on Bell Rd and 40th St. in North Phoenix. I also had to see an SSI Case Worker out near Scottsdale Airport who helped me through the process of doing the paperwork and setting up the Dr. visits.

I have to say that the Case Worker and the SSI Dr. and Shrink were incredibly helpful and understanding. It really made the process go smoothly. The best advice I can give you is to fill out all the paperwork correctly and as soon as possible. I physically carried the forms to My DR and Rheumo, and I picked them up in person as well. That saved alot of time and I was able to make sure everything was in my hands, and in order. You shouuld talk to an SSI Caseworker now if you haven't already. You can find an office close to you on the SSI website, or you can call the local SSI office which I believe is still down in the area of 7th st and Cactus. Get the ball rolling, stay on top of the paperwork, and don't miss any appointments with the SSI folks.

I've heard some horror stories about having to fight with the SSI in order to be approved for benefits, but that was not the case for me at all. In fact, the Caseworker told me that chronic incurable diseases like Lupus are basically a slam dunk. I hope all this helps. Let me know if there is any other way I could help you.

Rob

Mary Jane
01-18-2009, 02:18 AM
Rob, what did they base your disability on? Does it have anything to do with how often you have flares...and how intense they are?

rob
01-18-2009, 03:22 AM
Hi Mary Jane,

I'm a little fuzzy on the exact details, it's been 5 years now. But, basically this is how it worked in my case. My Dr./Rheumo attested that I was unable to work say, 75% of the time. The 25% of the time that I could work was not enough for me to be able to hold down any sort of job, even part time. My flares were and still are unpredictable to the point of me never being able to adhere to any sort of work schedule. So, even though I do have a couple of good days each week, they could never be predicted and thus the random nature of Lupus and flares makes me totally unemployable.

The Psychologist, and the SSI Caseworker both gave me fairly extensive interviews, to determine my state of mind, to see my attitude about my condition and work. I guess the best way to put it was that they were sizing me up to determine if I truly had a desire to work but couldn't, or if I was exaggerating and making more of my disability than it really was in order to get out of work and get paid by SSI for doing nothing. They wanted to know if I was a malingerer/goldbrick in other words.

In my situation, It was rather cut and dry. I was the owner/ceo of my company and as such, I would have little to no motivation to try to get out of work. Basically, I was the boss, I could come and go as I pleased, and I was making a decent enough amount of money that it would not make sense for me to give up what I was earning in trade for the meager amount I would get each month in disability pay. And, I guess it was obvious that I was working my "dream job" and I had spent so much time and effort to build the business that the only way I would ever give it up would be involuntarily due to illness.

The interviews were quite personal and detailed, but they were not like I was being grilled or interrogated. They (SSI) were very nice and really wanted to help. One thing that they both mentioned was the fact that Lupus falls into a category of disabilities that are considered more serious than most, and the fact that there is no cure makes it forgone conclusion that unless you go into remission, or some brilliant person discovers a cure, you'll be disabled for the rest of your life. So you are kind of a shoe-in if that makes sense.

Also, they told me that many people seeking disability have injuries that will most likely heal and allow them to be able to work again one day. Others have soft tissue injuries that really cannot be diagnosed other than the person says it hurts and they can't work. In other words, having an incurable debilitating and sometimes fatal disease like Lupus, makes the determination of being eligible for full long-term benefits rather easy. I hope all this makes sense, as I'm not very clear headed this morning. Let me know if this makes sense. Hope this helps.

Danica01
01-18-2009, 11:30 AM
I just finished my application on-line and am anxious for it all to start. They had me print off a bunch of paperwork to fill out and send to the office. I am going to fill it out and hand deliver it myself next week. Thanks for all your help and the best part is that you went through all of this when you lived here in Phoenix and so all that places you had to go are where I will be going :) I will keep you updated on how things are going and I will not get discouraged if I am denied, I will just appeal and keep going from there! I will not back down :!:

iseedeadmonkeys
01-19-2009, 04:57 AM
ive tried phoning the benefits place
and im not intitled to anything extra!!
here i am trying to go out of my way to get back into work when im balantly not sposed to be working and they cant help me out!!
thats not fair, its seems to me as if you have to be working or not working at all, this country is fecking useless, he made me cry too!!
a holes the lot of them

rob
01-19-2009, 07:50 AM
Iseedeadmonkeys,

I thought you were all set to recieve benefits. I don't know how the system works in the UK. Can you file some sort of appeal? Is there anyone there who could help you with possible legal advice? I'm sorry this is happening. Is there anyone here from the UK/England who has any ideas?

iseedeadmonkeys
01-19-2009, 08:06 AM
hey sorry i dint explain myself properly did i,
im entitled to the council benefits thingy for my rent,
but i was trying to see if there is any other kinda money i could be entitled too , but it appears not, although ive been given by my mum a web page to check out and fill out info for employmet and support allowece so i will go check that out now,
silly man making me cry, does he not know who i am??
lol xx

rob
01-19-2009, 08:24 AM
Ah, now I understand. I wish I had some good advice, but I don't understand the system there (sometimes I don't understand the system here). You're a fighter, don't let them off the hook. The man on the phone obviously doesn't know who I am either. I don't look kindly upon people who make my friends cry! :lol: There must be a way you can appeal this. Keep on them.

Mary Jane
01-19-2009, 11:24 PM
Never give up the fight!!! :x

iseedeadmonkeys
01-20-2009, 05:37 AM
I phoned up today just try one last time,
and its the same thing i cannot claim anything if im fit to work, even if its just one day a week of 7 hours!

i have a choice here (they gave me) i either give up work and seek benefits or i go back full time?! and this is the stupid thing, it works out better for me not to work! although the country is trying to get us back into work??

how do i do that everytime i do more than 1 days a week the lupus flares!! its impossible and no one in the benefits place seems to get that!

idiots, what do you think i should do?

xxx

rob
01-20-2009, 07:06 AM
Iseedeadmonkeys,

I could work one day a week, but what day that would be is totally unpredictable. Sometimes I could do a couple of half days, but then again, what days and when? There is a big difference between being able to work one day a week, and being employable. I don't know any employer who would be so flexible as to accomodate someone like myself, and who could blame them.

I know you told yourself that you are going back to work. You have put out such an effort mentally, and physically, to fight Lupus and go back to your job. Nobody here would criticize you if you had to make the decision to not work and collect benefits. You have a legitimate health problem. You are at risk of a flare anytime. You know that stress can do terrible things to people like us, so I would say that you should consider what path will cause you the least stress. If that means not working and recieving disability, then so be it.

You didn't ask for this disease. You didn't make up the silly rule about not being able to claim disability even if you can work one 7 hour day a week. You show tremendous honesty and determination with the way you have been handling this situation. Your honesty and determination would not be harmed, or somehow diminished if you had to decide that you had to give up work. Do what you believe is best for your health, and well being.

Rob

iseedeadmonkeys
01-20-2009, 09:18 AM
Hey there Rob 8)

I totally agree with you! i only picked thursday to work because i could focus on that day, half the time i go in to work thursday im ill or have to leave early, gawd its a right pain, i had a good convo with my mum and dad they have come up with an idea for me, we will speak about it on friday, i dont know what the idea is yet :!:

just seems silly really having to off sick and give up work, i know i cant work full time that would just be dangerous, i have been full time and payed my taxes for 14 years time for them to help me out a little i guess!

oh and btw i just read back thru my last message hehe i dint mean to call you idiots that was sposed to be the end of the last sentance lol .....see how words gets me inot trouble sometimes happy days :!:

xx

rob
01-20-2009, 11:14 AM
Whatever you are worried about saying, I didn't notice. I'm always saying back asswards things. Sometimes I go back and look at what I've written after a long sleepless night, and cringe when I read my words. No biggie. That's why the internet god's created the edit button.

Good to hear your parents have some ideas for you. My parents have been an immense help to me these past few years. They weren't always that way, so I am very appreciative of their help.

Government regulations rarely if ever make much sense. Sometimes you have to, on the surface, do something you don't want to, like giving up your one day a week to qualify. It doesn't make any person bad for having to jump through some silly hoops a bunch of bureaucrats have created. Sounds like you are feeling a little better about things today, that's good to hear.

iseedeadmonkeys
01-20-2009, 12:05 PM
Right i had to get this sorted out tonight just for a peaceful nights sleep really! ive stressed myself out so much tonight i hurt my legs :roll: :?:

so i asked my mum about it she give me 2 options (the ones i was chatting about) im gonna speak to work on thursday just to clarify it all too and whats best for them in the long run, my mum says i dont have to give up work forever they will still be there! they know i love my job! they know im good at my job! sooo i think i know what i have to do, mum says it wont be forever and thats how i have to look at it, even if its 6 weeks/6months/6 years they will still be there!

Is this for the best?

thanx Rob xx

2lupie
01-23-2009, 07:53 PM
I was dx. in 1993 with Sle, 2001 with kidney involvment,2004 idiopathic neuropathy,and in 2008 with Ra. I am now on my 3rd appeal. Why does it work for some and not others. SSI wrote me and said it was being treated with meds and as long as it is treated I am not approved. I have not been able to work since Aug 2007. They overdosed me with predisone at this time took several months to come out of that. When I finally recouped from that depression was my big problem along with flairs.I have lost my ins. which adds more stress. Well I cannot keep up with drs appts. due to finances.Cannot keep up with meds except for depression which state picks up.The next step with SSI is in front of a judge which they say will take 1 yr foorm this point. I filed March 2007.
Cindy

iseedeadmonkeys
01-24-2009, 04:23 AM
Cindy :)

I know the pain you are feeling, some ppl just seem to come out the other end smiling within a couple of months with their money in their hand, for the rest of us we seem to slip in the net of it all taking far to long to even be thought upon, in this country we have alot of the sicknotes known as (BBB-bad back brigade) this i find really annoying as they get rewarded straight away because its usally an accident at work and they play on it way too much get used to time off and liveing off the state pension! then theres us who cant actually do anything about our flares as it causes all sorts of other problems and sometimes the drugs dont work like they are sposed to because ITS LUPUS, and thats just the way of things, but agencies for benefits dont see us as having an actual illness, it really pisses me off ive seen this way to many times, im gonna fight this til the end i have alot of ppl behind me too, it just so happens this country is going into ressesion the same year my lupus flares NOT MY FAULT!! im affraid! already this year over 2 million ppl have been made redundant, ok thats all very well but what about us?

anyway enough of me ranting Kanye West is trying to cheer me up by singing really loud in my living room, i must let him carry on :D

peace
ISDM
xxx

TobyJug
01-31-2009, 06:51 AM
Hey thought I wud reply to this thread..
I am in the UK too and know the fight u having...
I had to stop working in 2007 sorta cud not manage anymore...
I tried to claim but did not get anywhere other than my council tax being paid for few months.. a So I tried to set up a company with the help of the council I never went through with it because it was to much money and I had used all my savings on living at this point then they put me under investigation because I was committing fraud they said...

Because the allegations made my lupus got really bad...... still is now... It never got much better after that.....
In the end I told them to %%%% off.... The investigation was closed after a while and I was in the clear because there was no proof of fraud...
Of course not because I was not doing anything wrong....

So I started up a little company....
At the moment with the economic downturn and all the business is not doing well at all and I have bills coming out of my ears....
I am feeling worse than ever and just can't deal with it anymore...
So I am closing the business going to clear out the office and see what my options are going onto the whole benefit thing...
I really don't like having to do it but I can hardly get up in the morning and do simple things let alone work..... even so I have applied for various jobs but I ain't getting any off them.... silly excuses are being given not to take me on.. So I feel now I have no choice....
I need to get some stable money because otherwise I am gonna get even worse I think..... if that is possible...

anyway good luck with ur claims and getting ur life onto track....
Sorry for the rant in your post but being in the UK too I know what ur going through.....

iseedeadmonkeys
01-31-2009, 08:23 AM
Hey Toby :)

i love your name, ive always liked the name toby i wanted to call my dog toby but mum wouldnt let me cause she was a bitch lol,

anyway im sorry to hear about your financial situation, its a pian in the neck with the country in ressesion too :twisted:

So ive applied for ESA employment and support allowence i hope i get approved but i wont be disheartned if i dont coz i know it takes a long time to process, there is 2 catorgories in this process one is where you are fit for work and they help you with getting you back etc, and the other one is npot fit for work at this point, im hoping i fall into that catogory for now, they ask alot of questions over the phone for this then send you out a wish list for info they need, im getting mine sorted on monday then sending it out,

i would advise you to try this, its changed names from incapicity benefit to ESA and everything goes via jobcentre plus now, have a look on their web page for more info, i was working full time then went sick for 4 months went back part time and financially could afford to be at work!

hope you get summin sorted soon Toby

peace
ISDM
xx

TobyJug
01-31-2009, 08:47 AM
hehe yeah I know Toby is a dog's name but I am nothing like a dog...

Honest..... :P

a well money is only money..... lol we'll get over it..... just needed a rant lol

I will start the process on Monday and go from there hope u get it sorted too....

iseedeadmonkeys
01-31-2009, 01:46 PM
Good luck with the proceedings on monday Toby

Rant as much as you like lol we all need to get it out of our system

ISDM
x

iseedeadmonkeys
01-31-2009, 01:46 PM
Oh and btw

if you need any advice msn me

:D

x

TobyJug
01-31-2009, 01:51 PM
Oh and btw

if you need any advice msn me

:D

x

will do thanks... added u as u have seen....

iseedeadmonkeys
02-05-2009, 08:51 AM
Hello all,
Could someone please answer my question, the ESA have just phoned me and strangly asking me questions already?? they want to get my claim processed as quick as possible, so that my money can be paid into my account shortly, ive just gotta get a drs certificate for 6 months tmrw, which i will do when i go to the drs tmrw, they said to me i see your very poorly as you are on chemotherapy! i did say yes to that question and although im on a low dose of it METHOTREXATE is still classed as CHEMOTHERAPY, but will be going up to top dose on monday.

My question is was i right in saying that to them? or are they more intrested in the more serverre cases of lupus and chemotherapy? im not lying to them i am taking it, i just dont want to get anything wrong in my claim :?

please someone help me

much love
IDSM
xx

dazed and confused
02-12-2009, 10:01 AM
Good afternoon all,

Some of you have asked how long the process takes, for me it has been two and a half years of waiting. I applied in September of 2006 when my disease started to take over my body. I was denied three times and have gone before the judge once in Nov. of 2008 and I have still heard nothing. The denial excuse was due to my age I was 26 when I applied after having the disease for over 5 years at that point. I wish you all the best luck and hope that your wait will not be as long as mine was and is.

iseedeadmonkeys
02-12-2009, 10:44 AM
I sent all my forms off on tuesday morning, and got awarded wednesday morning, thank god!!

kducks
02-12-2009, 11:42 AM
Congrats iseedeadmonkeys! I know what a relief it is to finally get approved.

Angel Oliver
02-12-2009, 11:42 AM
Hi All,

ISDM....Check about the DLA..dissability living allowance. Im not sure about our benefit system, but i know you should be on that.No harm in checking.You fill out the form,send it back then a decision is made on your illness.You have allot of symptoms so you should get it, but im not 100% sure. They contact your doctors you see. Even if its 10 a week, every little helps.

Love
Angel.xxx

iseedeadmonkeys
02-12-2009, 11:55 AM
Kducks cheers :D

Angel i dont understand our system at all, im on esa employment and support allowence, yet i cant work so i dont really get it all a great deal! they also sent a pink booklet for me to fill in for all my health problems, and they will write to my gp and dr to confirm treatment and illness' im really confused about the whole thing tbh! i know i should be on summin else but dunno wot :? i have asked about it but all fingers still get pointed back to ESA!! its a right nightmare the whole system is odd, i will have a look into dla tho thanx, oh btw what are you on?

xx

Angel Oliver
02-12-2009, 12:20 PM
Well im on DLA the low rate 17 and Incapacity as i am off work sick.I did originally get sick pay, but you go on this after. They are now trying to stop my DLA on top of my problems.I dont need housing benefit or council tax as i live with my mam. I am sure you will or should get DLA because its for your dissability.You have Lupus which case you should try and get it.Otherwise they keep it for their christmas party lol.I'll send good vibes out so you get it.

Love
Angel.xxx

iseedeadmonkeys
02-20-2009, 04:29 PM
i keep forgetting to phone the DLA why dont i remember it??
right monday morning i must phone them

ty

xx

kducks
02-20-2009, 04:38 PM
i keep forgetting to phone the DLA why dont i remember it??
right monday morning i must phone them

ty

xx

Write a sticky note to yourself and put it up where you will see it like the bathroom mirror..works like a charm for me.

iseedeadmonkeys
02-21-2009, 03:32 AM
good think kducks :D

i gotta do soo many things monday morning so i will write a list and put it up on my kitchen cupboard...............ty

x

iseedeadmonkeys
02-21-2009, 10:27 AM
I was hoovering and did my lobby when i found 3 letters on the floor

1 said ive been awarded full housing benefits rock on!!

1 said ive been awarded full council tax party time!!

and the other one said they owe me a rebate ahaha!! im well over joyed
dint even need to contact them,

also it said im intitled to income support and disabilty, sorted me thinks!

beers on moi

xx

Angel Oliver
02-21-2009, 11:31 AM
Oh im so happy for you.Fab :)

iseedeadmonkeys
02-22-2009, 07:47 AM
Yeah im pretty darn happy too :D

just gonna tackle the DLA hhehehe :)

xx

Angel Oliver
02-22-2009, 10:45 AM
The form really is identical to the one you would have already filled in for the others. Same questions really,but worded differently. Oh and wait till you see how many pages there are in the form LMao. You Will have numb fingers for a week.Maybe you can get someone to help you fill it in.My nurse helped me.So good luck :)

Angel.xxx

iseedeadmonkeys
02-24-2009, 07:14 AM
hmmm tht puts me off for a bit lol x

iseedeadmonkeys
02-27-2009, 03:18 AM
The esa are paying me 2 weekly money once a week?

im little confused why this is the case, of course im not complaining :D

but a little curious why? anyone else having this wonderful treatment?

peace
ISDM
x

Angel Oliver
02-27-2009, 08:21 AM
Just call them and double check cause believe me, when you least expect it and have no money, they take it back from you, if they are paying you more. It may be right, you need to ask them.Just check cause you dont want to end up out of pocket.

Love
Angel.xxx

tiggerlishus - Heidi
02-27-2009, 09:29 AM
obviously not !!! lol

benefits in uk have changed recently soo its really hard to understand what your entittled to and not entittled to best just stick with it mrses don't take no rubbish !!
i think no matter what country you live in it is hard to get them to understand this illness because you never know from one day to next what kind of day your going to have!!
i think having your gp and consultants backing you helps no end, that and getting good advice from some form of advicates ( think thats how its spelt!!) helps too finding some one like in uk we have samaritians!! soo good luck to all and isdm your getting there don't worry!

iseedeadmonkeys
03-02-2009, 04:36 PM
you mean citizens advice berau dont you??

ISDM
xx

SuperGiv
03-08-2009, 09:16 PM
Hey, I was wondering about DLA, on the direct.gov it seems like its pretty severe cases, and I wasn't sure whether to apply because obviously im not immobile all the time (due to the nature of flares) although sometimes I am :S. I know i'm not entitled to anything else because I'm a student. I sorted out the disabled student allowance, but that doesn't really help as it pays equipment and doesnt make up for the fact I can't have a PT job as well as my studies (tried that and failed :() But anyway, has anyone else been through the system as a student and got any idea about what I may get help for?
Whilst I'm on the subject, its annoyed me reading the struggle some of you guys have had to get incapacity! My dads an alcoholic(thus i struggle to sympathise with him) who got incapacity with no problem, gets 75 allowance p/w, rent paid, council tax paid, etc etc. Yet people with lupus struggle, which 99% is more debilatating and 100% isn't self inflicted grrrrr. Bloody benefit system in the UK.

Angel Oliver
03-09-2009, 04:26 AM
Hi SG,

I say try it.You have nothing to loose.You are sick and that is what the DLA is for.When you fill in the forms, write as if you are having a flare, all your bad days.Remember, people out there some i know get this benefit and i see them out and holidaying and they get it.I am housebound yet they get more than me and a car.So please....fill in that form ...you have nothing to loose.DLA is not counted as like incapacity.This is there to help you in daily life, your struggles.So fill it in as when you have your ''bad'' days and not as if you are having a good day. You have more bad days thean good you see. I made that mistake.I filled it in when i felt allot better and got refused.Not had many good days lately so i filled it in as i am now.

Goodluck.
Angel.xxx

mountaindreamer
03-09-2009, 05:53 AM
hi supergiv

i just want to agree with angel....complete your paperwork as if you were in the worst flare you have ever had....also, in US, it is common to get rejected at first, and persistence seems to pay off....please don't give up, keep trying. Hope it works.

Grime
03-09-2009, 11:49 AM
Here in the states it is their job to turn you down. When you reapply it goes to the next higher one. Then when that one turns you down an you reapply it continues up the latter.

They want you to give up. That way they don't have to do their job. If by chance your information goes to someone that understands Lupus they will on their own push your request thru.

A friend of mine is 100% and got her first check after 90 days of filling. Me I was to that I would hear back about mine for at least a year. I feel that has a lot to do with the person filling out the paper work.

Just don't give them any slack.
David

TobyJug
03-09-2009, 03:19 PM
yeh I will not comment about the UK benefits for now because I am going to use some words not fit for this forum.....

ssingh
04-03-2009, 02:50 PM
Hi
if anyone on medicare, how they are in respect for covering lupus medications and general care with regular A, B and D plans?