ive been fighting for ssi income and still havent gotten it after being denyed two times... but i hear it is very hard to, so hard that my friends dad whos in a coma didnt get it D: i hate this country. anyways, has anyone else gotten it yet? i have a disability placard for my car, but i have no money regardless and cant work.. what do you guys do? i can barely walk and i cant be in buildings cuz they are to warm.
I am sorry you are finding it really hard to get support from anywhere. There is a link to http://advocacyforpatients.org/ on the main page. I think they give you free advice on how to get support and information. I think they help with getting financial assistance for people with rare diseases. I hope this can be of help.
hi im in the uk and have been virtually house bound now for 2 yrs i get some financial support but as the laws in this contry have changed im waiting to be assessed as to my capabilities to hold a full time job down i have EM in my hands,face,groin,legs and feet and am in pain 24/7 with no support for it and i have to admit im more than a little concerned to the outcome of this assessment my point to it is if the medical gurus in the uk are at a loss with this illness what can 6 people on a panel going to come up with as to what they think i am capable of doing if im passed fit to work i will lose all financle support and have to hold a 40 hr plus job down if i can find one within my capabilites im worried sick im struggling now just to get from one day to another with the constant pain and exhaustion with out this as well let you know what the out come is anytime after the 4th april 2012 i will learn my fate i hope you get closer to the support you should be getting stay well
i applied about two - three yrs ago and got denied three times! then i had to apply for a fair hearing so finally i got a lawyer who handled everything until my court date. what i did when i didnt have medical insurance was go to the emergency room everytime i got too bad so i had alot more medical evidence (not sure what i needed), just every little thing i could think i might need. these things eventually helped me get state cash and medical assistance. that was not much money but helped alot compared to nothing! unlikely pretty much after i started recieving that it was cut funds two months later. they only gave the cash to people who they thought were highly likely to get accepted for SSI, because i had been denied multiple times already i didnt qualify. although during those two months or so i was getting the assistance i went to the doctors every chance i could, got all of the testing that i had started years before when i was younger (ages 10 - 15) that the old doc hadnt gotten done yet. the hospitals i went to had charities for people with low income that paid the bills since i had zero income. but i just stuck it through and tried to stay strong! i did everything i could to try and help my case and myself, even looked up alot of info on the internet about erythromelalgia... thats how i found this site.the day before i was scheduled for my hearing my lawyer called and told me that the judge had talked to her and said that after he reviewed the case he accepted it! i didnt even have to go to court which was great cause i was really very nervous!! lol! this was just a week ago that i heard from her. another thing she said is that now i have to wait two - three months to even recive my first check including a lump sum of the backpay from the years. after tons of waiting and waiting i now have more waiting and more waiting!! ive heard other people tell me their SSI pursuits and all are different. just have patience and keep your head up! good luck.
i have been fighting for ssi for two yrs now and finally have a hearing tomorrow.....all i can say is keep fighting and collect as much info from doctors as you can.....get a lawyer too it helps....
Hi Will,
Sorry you're having such a struggle. I'm re-applying for my disability benefits here in the UK, due to the changes made by the current government, it has become a nightmare. I've heard it's much more like the US now, so you have my utmost sympathy. As others have said, try to get a lawyer. It took me three attempts to even get disability (which is at the lowest rate!), as the people you are assessed by have no medical training! So I got: "Erythromelalgia? Never heard of it." Which in their minds means "doesn't exist".
Another problem is that some of the EM info out there is about mild secondary EM. When my local hospital had a symposium of rare diseases, they actually included EM! Instead of having me there, they had someone with mild secondary EM. This person described it as tingling, pins and needles and warmth, rather than being immersed in boiling oil that is also full of broken glass and being injected with acid from thousands of needles, which are the size of nails, all at the same time, which would be my description.
I know from my own experiences how frustrating it is to be young, have EM and be unable to work, have a social life or really do anything. I think people think it would be great "not to have to work" but they don't understand how awful the poverty would be, the stress of trying to get disability benefits and the sheer lonliness of not having any social contacts.
I have a few links and files of information on EM, especially the early onset form of it, if this would be of any use to your fight for ssi, please let me know and I will send them to you. I really hope that you get your benefits, you are certainly entitled to them.
Perhaps those of us with EM need to have a campaign to raise awareness of our disease. Although my idea of putting politicians feet in boiling oil for a minute would probably be illegal in most countries...
I won my SSI hearing today. The judge said he is granting me my case, Not because of this rare disorder (because there is no status for it) but because of my mental status......so i suggest that you see doctors for the mental stress this disorder is putting you through, it seems the only way to get help for us.....It just seems so unfair that just because it is so rare and there is no status for us that we get treated like we don't matter....Well i plan of trying to change that. i want to get the word out there about EM and try to get the system to make a disability status for us.....We suffer enough we shouldn't have to live in poverty too.....and just because they have never heard of it doesn't mean it does not exist.......
im going to fight for this with everything i have! lets do this.
i have my hearing in the next few months, ill let you guys know what happens
Good luck Will. I'll be thinking, hoping and praying for a good result. Probably best to follow MissLovelyNikki's lead and also emphasise the mental effects of having EM. Also, try clicking on the link on the main page that could find you a free lawyer to help get you the benefits you need and deserve.
THANKS! i just found a lawyer, and i feel he is pretty good, i will let you guys know what happens!!
alright everyone, i have a hearing for july 16, wish me luck!!! i will be going in with a flare so they see what happens when i really flare, i will try to cry, ill let u guys know what happens
Good luck, I'll be thinking of you. Just mention the utter devestation that EM has had on your life and the mental effects of the isolation, the stress of knowing that you'll have a flare and the depression that it causes.
If the worst comes to the worst and you can't cry, put some Vicks Vaporub on a tissue and wipe a little bit under, not in, your eye. Your eyes will start to water from the vapors. It's an old acting trick.
the thing that won my case was the mental problems because ssi does not have a status for out disability.....which is total bull#%&*.....but the judge had the medical expert testify about my mental stuff which they never do because the judge knew i needed the help.......so he made it happen. good luck Will.....
I just came upon this discussion due to the fact I am in process of applying and being denied twice over for disability. I am a registered nurse and absolutely love my job......and make much more money than SSI would ever pay. Problem is, I have not been able to work since last October and disability says I will not be disabled longer than 12 months (cause they are psychic?) and that I am capable of performing work,....(cause they know what my abilities are?) Its frustrating, because I cannot even find a qualified doctor to treat me, let alone give accurate information to disability. I have an attorney, so we'll see where things go. Just isnt right that someone gets to determine whether you are truly able to work, when they don't even understand what it is you have.