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I have CVID, known about it for about 10 years now. I no l;onger work but I do have 4 kids. I am on social securituy disabilty. Feel free to contact me for more specific info.

Robbi

I have CVID, known about it for about 10 years now. I no l;onger work but I do have 4 kids. I am on social securituy disabilty. Feel free to contact me for more specific info.

Robbi

Robbi,
I have thought about applying for disability but just don't see how my family can survive. I have been on short term disability since September, but it is running out soon. Was it easy for you toget your disability, how did you go about it. One of my doctor's told me, 'you can work, you just need to work part time'. I wished it was that easy. Any information is welcomed.
Rhonda

Hi Rhonda,

I don't know if you have already applied to Social Security or not, as this message was old and I just came across it. But I still wanted to give you my help if you can still use it (or if anybody else comes across this board with Social Security ?'s). I am 31 years old and was diagnosed with CVID in May of '06. I had severe reactions to IVIG and insurance difficulties (to put it mildly). During this time I was trying to work nights as a youth counselor, I have three young children, and was a foster Mom as well. I was put on State Disability (SDI) by my doctor but had to go off of it quickly as the pay was so low and my lifestyle (California mortgage) did not agree with SDI :-).

After battling with being sick and having family members tell me that I HAD to apply for Social Security I asked my doctor what she thought. She said "finally"! She thought that I should apply, that I needed to apply, and that she'd help in any way possible. She told me that if I kept on doing all the things I was doing I wouldn't be around for my kids! That was a very serious shock to me. Not to mention I couldn't physically do 1/2 of the things I wanted to do at the time. Oh, also I was in school full-time too (online though) and was about to graduate with my Bachelors at the same time I was applying for Social Security. There were definitely some low points there as I am a very independant and motivated person and slowing down, almost to a hault was hard, but necessary.

Applying for Social Security was very hard, but once I made my mind up I knew I had to. I did a LOT of reading and research before applying as I found out that Social Security is tricky. My doctor wrote a letter stating "poor prognosis" and I hand-delivered ALL of my medical records (labs, notes, etc.) to my local Social Security office. I applied online and this took several days but I wanted everything to be accurate. I cited the code of 14.07 from the Social Security's list of automatically disabiling conditions many times in my application. CVID falls under this code. If you go under the socialsecurity.gov website and look under automatically qualifying conditions, look under immune system and read what is under 14.07. Once my case was assigned to a (can't remember his title, but the person who would handle the case through the end) I made sure he knew me by name and eventually he didn't even need to look my info he new who I was because I was in constant contact with him. This is a very fine line because you don't want to make this person mad! I was very upfront and honest with him and let him know that I had contacted a social security attorney and have provided all the info that the attorney suggested. I let him know that my docs would provide more info if necessary, etc. Then of course I waited...

Eventually he sent me to see a Social Security doctor. This was a low point for me. The office was terrible, it smelled, and I was sick for weeks after going there...but I went! I went with all of my medical records in hand for the Social Security doc to review. I spent hours highlighting all of the important findings in my labs so she could review them. I think that this was very important as I'd been told many times that "I don't look like I have CVID", well I FEEL like I do...and the medical records show that I do and that helps a lot when you have to convince a complete stranger that you are in deed, sick. When this report got back to the man handling my case I called to check the status (the total time now was about four months from when I'd applied). He told me that they were sending me to a psychologist to check for depression. I can honestly say that this was the most frutrating part of the whole process. After all of the medical proof I had provided they want to send me to a mental health doc?? Luckily he gave me some time on the phone and I explained that nobdoy could go through all of this illness, stopping work, not doing so many things due to CVID without dealing with a little depression. Who wants to go on Social Security at 30? It's not like they give you millions:-) This was not a choice but a necessity and I told him that. I also told him that I was not depressed but extremely frustrated. Then I cited to him over the phone that code of 14.07 and he didn't realize that it was in my report...then he looked for my report and paperwork while we were on the phone. And.....they were all missing!!! Turns out that nobody had ever read my information. Sending me to the Social Security doctor was standard practice and had nothing to do with reading my labs. I reminded him that I hand-delivered my medical records into the office, but *poof* they were gone. I had my doctor's office fax everything (my thick chart!) over to him that day and I faxed over a letter explaining (yet again) the code of 14.07, that my condition meant that I automatically qualified and that I would do whatever I could to "help" him with any info needed. I also mentioned again that I'd speak to my attorney. Granted, I don't have big bucks and did not hire an attorney, I simply spoke to a Social Security attorney through my Prepaid Legal (I love this service so much!!). I got a call the next day from the man handling my case notifying me that the appointment with the psychologist was cancelled! Yes! This man who handled my case is the person who reccomended whether or not I was approved. After all that happened he told me just days later that he had made a reccomendation, but my case went to review. Just as I began to relax... However, the review was quick and I was approved and it's been fairly simple since then. I do know without a doubt, that had I not been in contact with the person reviewing my case I would have been one of the many who was denied and had to fight for years to get approved, or spent money that I wouldn't have for the services of an attorney. Nobody at Social Security was looking out for me (they lost my records and never read my application). I consider myself lucky that I did not have to fight for what I was indeed entitled to receive. I'd give it back in a heartbeat to feel good and make money on my own, of course! However, that's not reality right now and I've accepted that. I hope that this info will help anybody else who will have to apply for Social Security. It's definitely a fight, and to begin with the applying person is at a disadvantage, but you can do many things to help yourself out. I believe that finding out where your illness fits into their list of qualifying conditions is the best place to start! Best of luck to everybody applying. Don't give up and stay very involved in your case. Be your best advocate!!!
Joann