'A Patient Voice' Community

I applied for SSID for lupus amongst the many medical conditions that I have. Got denied, my lawyer then file an appeal for hearing before a judge.In about two weeks afer the filings recieved a phone call from my attorney that said that I had been approved and would recieved SSID in about a month. So please all the loopie's out there as well as others with disabling conditions, do not be afraid to apply.Thanks to NFHughes for the posting. I don't konow whether my case qualified under the compasionate allowances or not but its still good to get the information out.

How can I get a complete list of the compassionate allowances?

Dear Annie23270,

If you follow the link, you can get more information. You could also call and ask about what conditions/illnesses you are specifically interested in.

Yours in health,

Byroney

Wow! It is high time these (most fatal) were "pushed through" the system so that the people being affected can get some help!!

I absolutely agree with you Mommitude!

I think making anyone wait years for a decision is terrible, but especially those most gravely ill or disabled. People aren't air ferns and basic needs that can't wait for years before being addressed.

Byroney

Does anyone know if they will put fibromyalgia (and everything that goes with it) and migraines on their list? Thanks

Dear Msattitude37,

I don't know the answer, but maybe you could try asking on the Fibromyalgia Exchange ? You might also use that link and try calling.

Yours in health,

Byroney

I am new here but I am hoping to find some answers but not sure if Im in the right spot.I have a long list of medical conditions and without sounding like a hypochondriac If there is a chance of something going wrong medically Im sure to be the one that it happens to.Id like to see if someone would listen to all my ailments and see if they could give me an idea of what is goin on with me! My Dr. is at wits end & so am I.If this isnt where I should be id appreciate some direction.

Dear debroes68,

Welcome! This Exchange doesn't have a doctor Health Expert on it, so you would be better off asking medical questions on one that does. Here's a list of the Health Experts and their Exchanges, from A-Z. Make sure to look for one with a doctor, because there are others (like this one) that have a Health Expert who is not a doctor or medical person.

We're glad to offer support here if you want to share more details.

Byroney

hello, D --

in addition to byroney's excellent suggestion, and if you have the energy and/or resources, you might want to schedule a workup at one of the comprehensive clinics where they look at the whole of your medical problems and see if there are patterns and/or links to guide them in coming up with a treatment plan.

two of these clinics are --

-- the mayo clinic -- minnesota, arizona, and florida, http://www.mayoclinic.org/patientinfo/appointments.html , and

-- the cleveland clinic -- ohio, florida, and canada, http://my.clevelandclinic.org/patients/appointmentsrecords/default.aspx .

please keep us posted on how you are doing.

-- susie margaret

I cannot find my last post...I'm very new to the internet anyway

I have colo-rectal cancer and after 1 1/2 yrs of chemo and surgeries ( more chemo upcoming ) I am about to be desperate for food and $$ I've used all resources at my disposal now I need to file for disability...I've met people that have filed by phone and recieved benefits in 30 days is this viable?

Dear Pheelup,

I am sorry to hear that you have more chemo coming up, and that money and food are nearing a desperate state. I would encourage you to contact the social security folks and find out what your options with them are, and how long you can expect to wait.

I would also encourage you to talk to your doctor and the hospital you've been treated at, about cancer support resources. The hospital's patient advocate and/or discharge planner may be able to link you up with some resources. Don't forget checking in your own community (food banks, etc.), as well as making your need known to any family or friends. Also, if you belong to a religious group or any other kind of group or club, talk with them. Many time people are glad to be offered a chance to help out with donations or fundraisers.

Write back and let us know how you're doing,

Byroney

hellp, P --

i am so sorry that you are having such troubles. life is much harder than it needs to be, in my view.

first, i looked at the list of conditions for which "compassionate allowances" (what amts to almost immediate approval) are granted, but unfortunately colorectal cancer is not among them.

however, i did find out, much to my surprise, that it is possible to apply for disability benefits by phone. what actually happens is that you call 800/772-1213 and make an appt for someone to take your application by phone. you can also apply on-line, http://www.ssa.gov/applyfordisability .

you can also call a different number, 703/605-8000, and ask about their procedure for expediting cases, which can be done, "depending on the situation," according to their website. it might help as well for you to call (or write) your senators' and congresspersons' offices and ask for whatever help they can give; they might be able to expedite your application in some way.

whenever you make any contact with anyone -- the social security office, a senator, someone's staff, whoever -- keep track of the date, the name of the person who you talked to, what office they were from, where you reached them (phone/address), what you asked about, and what they said. make multiple copies of everything you send to anyone, and never give away your last copy.

second, let me make a suggestion, and that is that you consider getting a lawyer or disability advocate (a non-lawyer who represents you, just as a lawyer would) to handle your case. it would not hurt for you to talk with someone, at any rate. they are extremely familiar with the process and will also know exactly what documents you need. you can find these firms in the yellow pages under "attorneys" (look specifically for ads that say "social security" or "disability benefits") and under the separate yellow pages title "social security services."

lawyers and advocates who do this kind of work usually do not charge a fee unless they win your/their case, so you would not have to advance any money up front. their fee is taken as a proportion of any benefits you get that apply to the period before you filed your application; the money does not come out of benefits you will receive in the future.

third, there are a few websites where you can apply for financial or other assistance from private foundations. they are --

-- the cancer financial assistance coalition, http://www.cancerfac.org , you can search for help by diagnosis or by the type of help you need (living expenses, medical expenses, etc.);

-- cancerCare, http://www.cancercare.org/get_help/help_by_diagnosis/diagnosis.php?diagnosis=colorectal , which takes you to a page specifically for patients with colorectal cancer; and

-- the cancer fund of america, http://www.cfoa.org , where you can obtain medical equipment and various products used in your treatment.

i know that your need for help is urgent, so in a subsequent post i am listing some resources for different kinds of help, e.g., living expenses, utility bills, food, etc.

i send you caring thoughts and hope that things will improve for you soon. please keep us posted on how you are doing.

-- susie margaret