Have to quit PT....so frustrated.

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Beckyerin
Posts: 104
Joined: Wed Aug 17, 2005 8:06 pm

Re: Have to quit PT....so frustrated.

Post by Beckyerin »

What about office work? I'm not sure what your working backround is but I started out in college just doing temp work that invloved answering phones and data entry that the employer trained me in. By the way this data entry was all done one handed. I could have rested my BPI arm if I needed to. Of course if you unaffected arm is overworked maybe this isn't such a good choice but of all the jobs I have had office jobs are the least trying of my BPI arm. Good luck and try to keep your chin up!
Becky
User avatar
brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Have to quit PT....so frustrated.

Post by brandonsmom »

I don't know what state you live in but check in to a state funded Medical Insurance Program. I know you have a set of twins, which would qualify you as long as your income is not too high. MOST states have a program to reimburse for any insurance that you have to pay for for your kids, maybe that would help make things easier for you !!!!! In Illinois it is called KIDCARE.......check with you Department of Human Services office as this is the office that usually administers the program although it is not WELFARE. Gayle mom of Brandon ROBPI !
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Have to quit PT....so frustrated.

Post by Carolyn J »

Dear "Kissy"
RE your Neurontin: Every Pharmaseutical Company has what is called a "Patient Assistance Program" solely based on income. Only Doctor's can refer you and most Doctors offices has the SPECIAL forms BUT.. YOU HAVE TO ASK for it. The Pharm. Co. supplies needed meds free on this program for persons who have no other way to get medications..Also FYI, when it comes time to renew your prescription there are more forms everytime, BUT it IS worth the trouble!! Please do not "suffer thru it" without your Neuorontin.It sounds like you really need it. Sometimes Dr's can give you free samples they get from Pham. Co. Representatives too. Please go talk to your DR.
((((HUGS)))),
Carolyn J
Carolyn J
Adult LOBPI
User avatar
brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Have to quit PT....so frustrated.

Post by brandonsmom »

In my opinion you should try and get an attorney to help you with your disabbility. they only take a percentage IF YOU WIN!!!! I don't know where you live, but I know there are plenty of attorneys that do this. Carolyn's advice is right....your doctor can get you samples. My Family Practice guy gets me the prescriptions that I cannot afford. Gayle
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Have to quit PT....so frustrated.

Post by Carolyn J »

Hello again Kissy,
Yes, on 2nd thought I agree with Gayle; You probably qualify for SS Disability if you have worked before in your life & have enough SS "quarters by their standards" but you'd need the help of an attorney to get it. Go ahead & apply to Soc. Sec. Disablility as they pro-rate your Benefits WHENEVER you do get them from the date of your original Application. I'm guessing that they'll turn you down the 1st time but when you do Appeal the Attorney than can assist you to get approved on appeal. There is a great Thread Topic on this subject somewhere...Kath gives a great list of specific information that should go with your application. I'm sure the Topic Thread is in our Adult Message Board somewhere....help someone!
(((HUGS)))),
Carolyn J
Carolyn J
Adult LOBPI
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: Have to quit PT....so frustrated.

Post by Kath »

Christina
I sent you a very long e-mail with information on how to get started creating a paper trail so that you can apply.

I think that I left out one point.
Stop at your nearest SSA office and get the forms and start the process.
Explain that you have a birth injury but choose to be productive.
Let them know that you are finding it impossible now to preform the task necessary to function and care for yourself.
This is covered in the blue book but the words Erb's Palsy nor Brachial Plexus Injury are included. We are covered right now in bits and pieces from this area.

At least it's a start.
I sent you another e-mail with the Blue Book Listing
Kath
Kath robpi/adult

Kathleen Mallozzi
kissygoose

Re: Have to quit PT....so frustrated.

Post by kissygoose »

Thanks all. The twins already have state funded medical coverage but I don't qualify due to our income level. I know it changes when they turn 1 so I'm not sure how that will change as of March but I'm looking into it.

I'll have to check with the dr about the drug thing. But I will check it out.

One of the problems that I'm facing with work is that I can't even sit and type for more than 5 minutes anymore without hurting. I worked in an office before and they had to make some major concessions for me. Most of the jobs around here now are min wage and won't make the concessions neccessary for me to work. And all the other jobs around here require lifting or such that I can't do.

I'm also scared that if I go back to work it's going to drain me and I won't be able to take care of my kids and the house (I have enough trouble now without work). It's just so frustrating.

I will start the disability process although I really don't have much faith that I'll be granted ever.

Thanks again.
kissygoose

Re: Have to quit PT....so frustrated.

Post by kissygoose »

I just got off the phone with our case worker. She is sending me the forms for our state medical program for seniors and disabled people. She says as long as I have a dr fill out the paperwork and have filed for SSI disability that I can file for our state program. Of course it doesn't mean 'll get it but it's a good start. I'm hoping to work on the SSI application this weekend.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Have to quit PT....so frustrated.

Post by Carolyn J »

Dear "Kissy",
Please keep us informed of your process,it does help us all in some way. AND, Good Luck too!!
Hugs,
Carolyn J
Carolyn J
Adult LOBPI
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Have to quit PT....so frustrated.

Post by Carolyn J »

Hey...I meant your "progress" thru the "hoops" of SSI.
Hugs again,
Carolyn J
Carolyn J
Adult LOBPI
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