Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hi Everyone and especially Briggzie: Just a note I am on SSI out in calif. and receive my infusions thru medicare/medical. I received SSI because I was cuckoo (sad, but true) mentally ill, due to the stress of dealing with the cvids. Not being able to hold a job because of illness, never making enough money to pay rent AND afford health insurance, sooooo.....anyways, I was told I COULD ABSOLUTELY not work and if I was to inherit ANYTHING it would automatically go to the state as payback. So I am thinking there are different rules for different ways you qualify for SSD or SSI. I think if you are approved because of a PHYSICAL disability you CAN work so many hours. But if it is a MENTAL disability, you CANNOT work part-time and receive extra income. I think that rule also applies to people that are drug addict/alcoholics that are on SSD or SSI. I could swear this is what they told me at the Social Security office, but then again most of the people that work there are bitter and angry and feel that people dont deserve any help, so maybe the lady there that told me that was just trying to make me feel more inhuman then I already felt. I know this as fact, because my sister and all her friends do this for a living (30 years of it) and they all HATE the people coming in asking for help. The only ones they feel sorry for are the ones that are literally dying with cancer and have kids.
I would TOTALLY recommend going thru BINDER AND BINDER, but remember they get 1/3 of your retro pay. But you dont have to deal with the demoralizing, belittling attitudes you get if you go into the local social security office yourself. You have to see their quack doctors that treat you less than. I had YEARS of medical records and that helps also. If you can support yourself and/or have a spouse or a family that helps you out financially go the Binder route and be patient, and remember it could take up to a couple years, but once you have it no more worries about getting your infusions or antibiotics. My personal journey getting on SSI was something I would never wish on my worst enemy, but I got thru to the other side, and no more worries about dropping dead from a killer infection. Anyways Good luck and remember PATIENCE is the KEY FACTOR.
I would TOTALLY recommend going thru BINDER AND BINDER, but remember they get 1/3 of your retro pay. But you dont have to deal with the demoralizing, belittling attitudes you get if you go into the local social security office yourself. You have to see their quack doctors that treat you less than. I had YEARS of medical records and that helps also. If you can support yourself and/or have a spouse or a family that helps you out financially go the Binder route and be patient, and remember it could take up to a couple years, but once you have it no more worries about getting your infusions or antibiotics. My personal journey getting on SSI was something I would never wish on my worst enemy, but I got thru to the other side, and no more worries about dropping dead from a killer infection. Anyways Good luck and remember PATIENCE is the KEY FACTOR.
Also not sure how it works in California but in NY if your on SSI or SSD you can work up to 15-20 hrs depending on wage no matter what your diagnosis is to get the assistance. the governemrnt would like people to work. just make sure if you do you send your pay stubs into Socail Secruity so they can make the adjustments on thier end.
Shoshi