Todays been a good day.I got my papers back on my app. for ssi and disabilty the other day.They were denied.Add that to my medicaid being turned down,now thats good.
Was told the only way to get these benifits was to get a lawer.So I went to see one today.They said that it usually took about one and a half to three years to get it done.
As soon as I walk in the door this evening the phone rings.It's my current nuerologists' nurse.She was telling me they were calling another clinic to see if they could help me.(keep in mind these are the same people who helped me get turned down at Mayo).I was explainig to her that I really like my Dr.,but I needed someone who speciallized in tbpi.At this point she agreed considering that Dr.B... didn't do surgery I needed to try something different.(??!!!!!)
I'm over it.I am asking way to much of people.It's impossible to expect these people to help me.
I have been busting my ass trying to get someone to help me.Calling and calling and.....And today 6 months after my injury the one person that has all the chips in his bag decides to tell me that he doesnt do operations at all.(What a joke)
Marshall
What A Joke
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: What A Joke
Hi Marshall
I was hoping someone from the US would post with some answers. I don't understand this, I know lots of people have to go without health care in the US, but if you can't get help to actually live, what on earth are you supposed to do? Can you get an unemployment benefit or something? How do you eat?
I feel for you-a tbpi on its own is hard enough to deal with, all this other stuff on top would make it terrible.
I hope you get some answers and help soon, you're one tough cookie to be doing as well as you are. Keep on keeping on Marshall and hold on to that sense of humour, you'll need it :0)
Jen NZ
I was hoping someone from the US would post with some answers. I don't understand this, I know lots of people have to go without health care in the US, but if you can't get help to actually live, what on earth are you supposed to do? Can you get an unemployment benefit or something? How do you eat?
I feel for you-a tbpi on its own is hard enough to deal with, all this other stuff on top would make it terrible.
I hope you get some answers and help soon, you're one tough cookie to be doing as well as you are. Keep on keeping on Marshall and hold on to that sense of humour, you'll need it :0)
Jen NZ
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catchatrain
- Posts: 49
- Joined: Sat Mar 11, 2006 2:33 pm
Re: What A Joke
Hi Jen NZ,
I don't know why but I really don't get as many replies over here.I'm hanging in though.I had to move back in with my parents after my company went bankrupt.
Imagine that,35 yrs old and back home.I was 16 when I left the first time,so it's a pretty big culture shock for me.Anyway that's how I eat and stay in cigs.If it wasn't for them I honestly don't know where I would be right know.
I'm going to wright another post about my Dr. visit today.Thanks for taking a peek.=).
Marshall
I don't know why but I really don't get as many replies over here.I'm hanging in though.I had to move back in with my parents after my company went bankrupt.
Imagine that,35 yrs old and back home.I was 16 when I left the first time,so it's a pretty big culture shock for me.Anyway that's how I eat and stay in cigs.If it wasn't for them I honestly don't know where I would be right know.
I'm going to wright another post about my Dr. visit today.Thanks for taking a peek.=).
Marshall
Re: What A Joke
I don't understand this either...what are you supposed to, just disappear into the woodwork?
I am appalled at the fact no-one from the U.S has answered your post either, not even a word of sympathy let alone any practical advice.
I guess your situation has really thrown up some glaring pitfalls in the U.S system, and no-one wants to admit that all is not perfect over there unless you have a few $$ to back you up.
Thinking of you mate, and hoping for better times for you...wish I could do more...
Lizzyf
I am appalled at the fact no-one from the U.S has answered your post either, not even a word of sympathy let alone any practical advice.
I guess your situation has really thrown up some glaring pitfalls in the U.S system, and no-one wants to admit that all is not perfect over there unless you have a few $$ to back you up.
Thinking of you mate, and hoping for better times for you...wish I could do more...
Lizzyf
Re: What A Joke
I'll admit it. I spent the night in the ER about 3 weeks ago and after I was admitted the doc himsflf said to me " what kind of insurance do you have, so i can know how to treat and prescribe follow-up" WTF is that?
I believe that there should be help for anyone who needs it. I hope you get it. I truly wish that there was a Shriner's for adults.
MArlyn mom to Jody ROBPI (almost 2yo)
I believe that there should be help for anyone who needs it. I hope you get it. I truly wish that there was a Shriner's for adults.
MArlyn mom to Jody ROBPI (almost 2yo)
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brandonsmom
- Posts: 1401
- Joined: Mon Nov 22, 2004 4:43 pm
Re: What A Joke
My husband recently lost his job and we had to go on medicaid. I have prescriptions like no one's business. No doctors in my area will even take medicaid so if my kids get sick I have to go the ER with them....because the health department does not have walk in hours !!!! GRRRRRR !!! I appreicate the fact that I have some kind of insurance grant it....but when I have to spend 4-5 hours in the ER and then I get sick because of it there is something wrong....hope someone else can offer advise.....what I am trying to say is that MEDICAID is not always the way to go !!! Gayle mom of Brandon robpi
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: What A Joke
Marshall
Here is a link to new guidelines for SSD please contact SSA and discuss it with a representative.
It has been hard for bpi injured to get disability.
You have to make sure that your doctor documented all of the problems with your arm when he/she submitted their letter to prove disability.
It is important that they understand all the loss of function and the pain issues your have.
They use the Blue Book to decide eligibility but this has just been revised so that bpi is now mentioned.
https://s044a90.ssa.gov/apps10/POMS.NSF/lnx/0424580030
Kath (adult/robpi)
UBPN Board of Directors
Here is a link to new guidelines for SSD please contact SSA and discuss it with a representative.
It has been hard for bpi injured to get disability.
You have to make sure that your doctor documented all of the problems with your arm when he/she submitted their letter to prove disability.
It is important that they understand all the loss of function and the pain issues your have.
They use the Blue Book to decide eligibility but this has just been revised so that bpi is now mentioned.
https://s044a90.ssa.gov/apps10/POMS.NSF/lnx/0424580030
Kath (adult/robpi)
UBPN Board of Directors
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: What A Joke
I will try to post it again as a link to make it easier for you.
Kath adult/robpi
https://s044a90.ssa.gov/apps10/POMS.NSF/lnx/0424580030
Kath adult/robpi
https://s044a90.ssa.gov/apps10/POMS.NSF/lnx/0424580030
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: What A Joke
Kath...you need to put the whole URL adress in, complete with all the W's to make a live link... try this www.https://s044a90.ssa.gov/apps10/POMS ... 0424580030
Re: What A Joke
b*gger...that didn't work either..it usually does...oh well, at least we tried, ay?
Liz :0)
Liz :0)