Disability approval

[mcfarso]

my sister is 29 and just had surgery in October of 2009.  They took a little bit of her skull out and gave her brain more room.  She is still in pain and her headaches are so bad at times that she goes to her knees.  She has numbness in the side of her face and still passes out at times.  Her neck and back still hurt and there is no way she could hold down a job.  Disablity officer told her she couldn't get approved for disability benefits due to pain... How do make someone who doesn't have chiari understand what you all are dealing with?  How can I help her?

[ChiariWolf]

:-\ Sorry for your sisters troubles. Sincerely.

Unfortunately, I've been there. At the time I didn't realize it was Chiari causing things to happen the way they where. But the best counsel I got from anywhere was from someone who at the time was my brother-in-law.

The key is this~ to obtain disability you must be able to show that you can 'no longer' preform the duties that you did before. Also, you must be able to show that you can not be trained for another type of work. That is where I got into a mess.... This stupid thing inside of me that wants to work kept pushing me for nearly 15 years I'd try this and try that and well I do know how to do a varitey of things now. But my body is finished to the point where I can't even seem to do the things I want to do around the house. Probably 5 out of 7 days I struggle to even do the simplest things. Often I wonder if I'd listened to those around me years ago if this body wouldn't be more useful now.

This is part of what kept me from obtaining SSDI in the begining. I tend to put on my positive side as by nature we all like to be encouraging to others. However, with the folks who's job is to determine your disability... if they see that positive side of you well your done. I suspect if they actually seen what happens when a Chiari or subcrannial headache hits us they'd know right up front that 'NO' employer is going to keep us working for long. Too much risk on their part for most jobs. If you have a sitting job it wouldn't be as much risk, but how effective is even a good secratary who has a Chiari Headache with her brain vibrating inside her skull as the fluids try to flow and can't. When this happens, it's not that you don't want to, but it is impossible at times to keep a though straight in your head. What kind of pain is it????

I've dealt with the bones in my feet splintering while I walked, ran and worked on those feet. My bone actually came out through the skin to where I"d have to cut my bloodied socks off of my feet after a days work. My lower back was not attached to the pelvic region. When this was discovered the Doctors said they didn't know how I even was able to stand let alone endure the pain. When my right leg got gane green from the splintered bones again they couldn't belive that I worked on that leg. But let me tell you first hand... the pain of a brain seizure as your dealing with a Chiari Headache is way beyond any pain I've ever endured.

Tell her to appeal! asap

Now how can you help her? Well, I told you some of the above 'for your benifit' not her's. There is a word, seldom used in this society. It's called empathy, you showed it to a degree by taking the time to write into this forum. But you see, Chiari is so unpredictable that the only way to really help her is to be understanding. There will be days when she may venture out with you, perhaps to a store, your home, her home or whatever. Things may be going very well and at a moments notice 'she'll be done'. Understand, it's not an act, it's not her choice or her fault. It's life in this imperfect world. When Chiari hits you have no choice. At the start of a symptom or an attack you can sometimes deal with it, other times all you can do is bear down and focus away from everything. So in order for you to help her, my advise would be to continue to watch this list, read/listen to the trials that some here deal with as that will better enable you to empathise with your sister and 'really' help her.

I do hope my babbling has helped somewhat. Money is great to pay our bills, but it doesn't buy a real smile. A real smile comes from the heart.

Wolf

[selmaS]

Hi and welcome to the Chairi forum.

Alicia made a good point that in different states there r different ways to proceed....which r u in? And since u already were denied u may want to do an appeal and try it with an attny this time.....they only get paid if u win...so it is in their best interest for ur DS to win.

"selma"

[Alicia696]

Hi, I have 2 children who had cancer and where unable to get disability and so was I. Here in PA you can take it to court but that can take awhile. My husband makes to much money for me and my kids to get it but you can take it to court as long as u have the letter that states she can not recieve disablity, they have lawers that will help you and if you dont win they dont charge you. But mind you if you take it to court she HAS to write down every doctor appt. every scan every medication she has been given every doctor with address phone number and the list goes on. I would take it to court and find a doctor that will back her up. My husband tried to get me life insurance but i couldn't get that either do to all of my health issues. Good thing he could get it through the military when he was in, now he's a sargent at a state max prision. So best of luck to you and if you have any questions feel free to ask.

Alicia