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,

Have you looked into adding cytomel to your synthroid? It appears that the T3 is necessary in higher doses for some people, as they do not readily convert the T4 to T3 as needed. I read about that recently....just throwing that out there for you to check into. Lots of info out there on it.

Hope you get it all tweaked just right! I recently upped my Biothroid dosages (which is a T4 and T3 mix) and I feel pretty good right now, especially since adding the hydergine and piracetam daily as well. Brain is clear again! yeah!

Have fun at Disneyland, don't overdo it though!

Patty

----- Original Message -----

From: julieyourrealtor@...

Sent: Saturday, August 16, 2003 10:09 AM

Subject: Re: Re: hello

Hello Patty...Thank you for writing. Seems like the symptoms have subsided a bit. Get a little worse with the hunidity in San Diego, a bit drier up north in Morro Bay. Stomach pain has subsided. Seems to get worse if I am eatinng bad things...chips, etc. As far as medication, I was diagnosed as being hypo at 26, I am 36, been on meds for 10 years, currently on synthroid, 100 mcg, I was on a higher dosage that made me hyper for a little while toward last December. I had implants put in at 33, (saline), I am sure the implants have much to do with what is going on. I had them taken out at the end of June, some things have subsided, night sweats are gone. But as far as the hypothyroidism, it has always been enlarged from the time I was 13. Mom took me to the doctors and they said it was a puberty thing and I would probably out grow it. My grandmother was hypo, she had half removed in the 50's. Hop efully things will get regulated a bit better after I see the endocrinologist. Will try the muscle meds you suggested. We have some, my hubby takes it already, he runs 5 miles a day and can tell when he doesn't take it...take care....off to sight see, then Disneyland monday... S>

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Thank you Patty...Not sure about adding these to my thyroid meds, will check

into it...have a great day...

>

> From: " *~Patty~* " <fdp@...>

> Date: 2003/08/16 Sat PM 02:20:15 EDT

> < >

> Subject: Re: Re: hello

>

> ,

> Have you looked into adding cytomel to your synthroid? It appears that the T3

is necessary in higher doses for some people, as they do not readily convert the

T4 to T3 as needed. I read about that recently....just throwing that out there

for you to check into. Lots of info out there on it.

> Hope you get it all tweaked just right! I recently upped my Biothroid dosages

(which is a T4 and T3 mix) and I feel pretty good right now, especially since

adding the hydergine and piracetam daily as well. Brain is clear again! yeah!

>

> Have fun at Disneyland, don't overdo it though!

> Patty

> ----- Original Message -----

> From: julieyourrealtor@...

>

> Sent: Saturday, August 16, 2003 10:09 AM

> Subject: Re: Re: hello

>

>

> Hello Patty...Thank you for writing. Seems like the symptoms have subsided

a bit. Get a little worse with the hunidity in San Diego, a bit drier up north

in Morro Bay. Stomach pain has subsided. Seems to get worse if I am eatinng

bad things...chips, etc. As far as medication, I was diagnosed as being hypo at

26, I am 36, been on meds for 10 years, currently on synthroid, 100 mcg, I was

on a higher dosage that made me hyper for a little while toward last December.

I had implants put in at 33, (saline), I am sure the implants have much to do

with what is going on. I had them taken out at the end of June, some things

have subsided, night sweats are gone. But as far as the hypothyroidism, it has

always been enlarged from the time I was 13. Mom took me to the doctors and

they said it was a puberty thing and I would probably out grow it. My

grandmother was hypo, she had half removed in the 50's. Hop efully things will

get regulated a bit better after I see the endocrinologist. Will try the muscle

meds you suggested. We have some, my hubby takes it already, he runs 5 miles a

day and can tell when he doesn't take it...take care....off to sight see, then

Disneyland monday... S

> >

>

>

,

Have you looked into adding cytomel to your synthroid? It appears that the T3 is necessary in higher doses for some people, as they do not readily convert the T4 to T3 as needed. I read about that recently....just throwing that out there for you to check into. Lots of info out there on it.

Hope you get it all tweaked just right! I recently upped my Biothroid dosages (which is a T4 and T3 mix) and I feel pretty good right now, especially since adding the hydergine and piracetam daily as well. Brain is clear again! yeah!

Have fun at Disneyland, don't overdo it though!

Patty

----- Original Message -----

From: julieyourrealtor@...

Sent: Saturday, August 16, 2003 10:09 AM

Subject: Re: Re: hello

Hello Patty...Thank you for writing. Seems like the symptoms have subsided a bit. Get a little worse with the hunidity in San Diego, a bit drier up north in Morro Bay. Stomach pain has subsided. Seems to get worse if I am eatinng bad things...chips, etc. As far as medication, I was diagnosed as being hypo at 26, I am 36, been on meds for 10 years, currently on synthroid, 100 mcg, I was on a higher dosage that made me hyper for a little while toward last December. I had implants put in at 33, (saline), I am sure the implants have much to do with what is going on. I had them taken out at the end of June, some things have subsided, night sweats are gone. But as far as the hypothyroidism, it has always been enlarged from the time I was 13. Mom took me to the doctors and they said it was a puberty thing and I would probably out grow it. My grandmother was hypo, she had half removed in the 50's. Hop efully things will get regulated a bit better after I see the endocrinologist. Will try the muscle meds you suggested. We have some, my hubby takes it already, he runs 5 miles a day and can tell when he doesn't take it...take care....off to sight see, then Disneyland monday... S>

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  • 3 weeks later...

Welcome to the group!

Sorry about your lupus diagnosis and your encounters with obnoxious

specialists, LOL. I think many of us have met a few of those. I don't

know of a rheumatologist who would meet your specifications, but I wish

I did since I am in the Chicago area, too.

[ ] hello

> i was recently diagnosed with lupus, more or less. which is to say, i

> do not have a perfectly typical set of lab tests, but i do have a

> moderately high ana, rash, tender glands, pain, yayayayaya. been

> taking plaquenil for almost 6 months, but it is not helping as far as

> i can tell. finding that specialist are a particularly obnoxious

> species of doctor. love my internist, tho, so i haven't lost my mind

> yet. (ok, as far as i can tell.) not looking for an info in

> particular, unless someone knows a humble, helpful rheumatologist in

> chicago. just wanted to say hi.

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Welcome to the group from a former Waukeganite, now living in

southern Indiana!

Judi

> i am in rogers park. i have been here for 16 years, and lived in

> edgewater for 5. i was raised in aurora.

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I lived in Park for a short time. Oh, how I miss the lake!

[ ] Re: hello

> i am in rogers park. i have been here for 16 years, and lived in

> edgewater for 5. i was raised in aurora.

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  • 2 weeks later...

hey iris, hope things are well with you. i'm still hanging in there but

sometimes it feels like the rope is unraveling!! i have been in alot of pain

this

week. i dropped down to 2.5 mgs prednisone. my neck, back have been killing me.

(thankfully i work for a chiropractor now and i get free adjustments!!) my

left knee has been very painful since wednesday, but i had to scrub 2 rooms of

carpet (poor puppy is on medicine and has to potty alot) also i had a container

break in the fridge and had to scrub off sticky cranberry sauce. plus i went

to a farmers market and walked quite a bit. (decided to do something fun on

my day off) i am supposed to go to a seminar in chicago next week on my day

off. i am not looking forward to a train ride and lots of walking. i am hoping

my boss has been too busy to register us. (i know, i'm bad) finally got

response from dr tisa that he can't afford to pay me until next week. at least

it

was response. well better get my butt in gear. gotta go to work.....kathy in il

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  • 3 weeks later...

I agree Leanne. It's been pretty quiet. Everything is going good here on

my end. Garrett is recovering well from his surgery. Everything thing

looks very good. He goes back to see the surgeon on Wednesday and i'm

hoping he'll be allowed to go back to his normal activity. He has one more

soccer game left and he hasn't been able to play since his surgery.

Funny thing happened to me this morning. The family and I went out to

breakfast with my brother and his family. Because we had such a large

party, we put all the boys at one table and the 3 girls sat at another. We

had just about finished eating when i seen a guy carrying his son. It just

so happened that the boy has blepharophimosis. I couldn't help but keep

looking at him since it's such a rare thing to see, let alone see someone in

the same area have it. They were seated in the booth right next to mine.

After awhile i decided to go over and talk to him. Found out that our kids

see the same surgeon as well. They were very shocked to see that Austin, my

oldest son, looked " normal " . It was very encouraging for them to see the

surgeons work. As we were talking a little more i found out they live in

the town i do. They actually live about a 5 min. walk from my house, and

one of his cousins live on my street. We always found out that we might

even been related. When i told him my maiden name he was shocked. He

wasn't sure how, but he's pretty sure we are distant relatives. I gave him

my name, number and email and told him about this group. I'm just happy to

find someone close that has the exact same thing.

Hope everyone is doing well.

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Hey ,

Thanks for telling about your encounter with the people who live sooooo

close, unbelievable!

It reminds me of my talk with Maarten's mum more than a year ago in the

hospital. We phoned once but after that we didn't have anymore contact.

I have wanted to call them again, but didn't come round to it. After

reading your post I am reminded of it and will try to do so soon.

I too thought it was so nice to meet with someone who lives so close!

Bernice

-----Oorspronkelijk bericht-----

Van: Feichtner [mailto:mfeichtner@...]

Verzonden: zondag 5 oktober 2003 21:28

Aan: blepharophimosis

Onderwerp: Re: blepharophimosis hello

I agree Leanne. It's been pretty quiet. Everything is going good here

on

my end. Garrett is recovering well from his surgery. Everything thing

looks very good. He goes back to see the surgeon on Wednesday and i'm

hoping he'll be allowed to go back to his normal activity. He has one

more

soccer game left and he hasn't been able to play since his surgery.

Funny thing happened to me this morning. The family and I went out to

breakfast with my brother and his family. Because we had such a large

party, we put all the boys at one table and the 3 girls sat at another.

We

had just about finished eating when i seen a guy carrying his son. It

just

so happened that the boy has blepharophimosis. I couldn't help but keep

looking at him since it's such a rare thing to see, let alone see

someone in

the same area have it. They were seated in the booth right next to

mine.

After awhile i decided to go over and talk to him. Found out that our

kids

see the same surgeon as well. They were very shocked to see that

Austin, my

oldest son, looked " normal " . It was very encouraging for them to see

the

surgeons work. As we were talking a little more i found out they live

in

the town i do. They actually live about a 5 min. walk from my house,

and

one of his cousins live on my street. We always found out that we might

even been related. When i told him my maiden name he was shocked. He

wasn't sure how, but he's pretty sure we are distant relatives. I gave

him

my name, number and email and told him about this group. I'm just happy

to

find someone close that has the exact same thing.

Hope everyone is doing well.

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Wow... thats awesome!...I wish we could bump into someone with it also...Whats funny, Is that since Ethan has been born, I tend tolook at everyones eyes now! JUst to see if I can come across someone with it...I would definately go up and say something...I just want to actaully talk to someone in the flesh who has this...It makes us feel we ARE the only ones out there with it, I know we arn't, but right here where we live we are!

So glad to hear the Garret is doing good:) My husband is american, I met him in Hawaii 12 years ago! We both lived there fro 9 years, He was born in Illonois, I know the USA is so much better in medical and technology! We are probably a wee bit behind here in New-Zealand, It makes us want to come over there to get another opinion, may-be we will, when we go visit hawaii, There is a surgeon right there who deals with this!...Good excuse for a vacation also ha:)...Well nice to hear from you...talk soon leanne:)

Re: blepharophimosis hello

I agree Leanne. It's been pretty quiet. Everything is going good here onmy end. Garrett is recovering well from his surgery. Everything thinglooks very good. He goes back to see the surgeon on Wednesday and i'mhoping he'll be allowed to go back to his normal activity. He has one moresoccer game left and he hasn't been able to play since his surgery.Funny thing happened to me this morning. The family and I went out tobreakfast with my brother and his family. Because we had such a largeparty, we put all the boys at one table and the 3 girls sat at another. Wehad just about finished eating when i seen a guy carrying his son. It justso happened that the boy has blepharophimosis. I couldn't help but keeplooking at him since it's such a rare thing to see, let alone see someone inthe same area have it. They were seated in the booth right next to mine.After awhile i decided to go over and talk to him. Found out that our kidssee the same surgeon as well. They were very shocked to see that Austin, myoldest son, looked "normal". It was very encouraging for them to see thesurgeons work. As we were talking a little more i found out they live inthe town i do. They actually live about a 5 min. walk from my house, andone of his cousins live on my street. We always found out that we mighteven been related. When i told him my maiden name he was shocked. Hewasn't sure how, but he's pretty sure we are distant relatives. I gave himmy name, number and email and told him about this group. I'm just happy tofind someone close that has the exact same thing.Hope everyone is doing well.

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Lynn,

I'm really sorry that you lost your case, and also quite surprised. I know

your neck problem started before the RA diagnosis. Your attorney has a lot

of time vested in this case, so I'm sure if he thinks he can win an appeal,

he'll do it. The RA may play a part in your disability, but it doesn't take

away your injury.

Sending you hugs,

a

> Hi Everyone, a and ,

> I have been here the last few days in complete disbelief. I lost my

> case in court with Worker Compensation. The judge said she knows I am

> very disabled but it is not from my former job. So she ruled in favor

> of wc. My attorney was just a shocked as I am. I still don't think I

> believe it. It seems to be the fact that I have RA is what turned the

> corner. Never mind that I probably got the RA from the neck injury. I

> don't know if we are going to appeal or not, I am still to shocked. My

> attorney wants to go over my finances with me. I know if I had gotten a

> settlement social security and another insurance company I deal with

> would have both deducted the amount from what they give me. Kind of

> everyone would have had dibbs on the settlement. I just don't know what

> will happen in the next week or two. I am just too shocked.

> Just thought I would let you all know.

> Lynn (MeMom)

>

>

>

>

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I am very sorry to hear that, Lynn. This must be very difficult news to

accept after everything you've been through.

As always, you are in my prayers,

[ ] hello

> Hi Everyone, a and ,

> I have been here the last few days in complete disbelief. I lost

my

> case in court with Worker Compensation. The judge said she knows I am

> very disabled but it is not from my former job. So she ruled in favor

> of wc. My attorney was just a shocked as I am. I still don't think I

> believe it. It seems to be the fact that I have RA is what turned the

> corner. Never mind that I probably got the RA from the neck injury.

I

> don't know if we are going to appeal or not, I am still to shocked.

My

> attorney wants to go over my finances with me. I know if I had gotten

a

> settlement social security and another insurance company I deal with

> would have both deducted the amount from what they give me. Kind of

> everyone would have had dibbs on the settlement. I just don't know

what

> will happen in the next week or two. I am just too shocked.

> Just thought I would let you all know.

> Lynn (MeMom)

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My attorney is great but I just couldn't sit on this any longer. I called the

doctor who did the deposition and ask for his help. I didn't tell my attorney I

was doing this. This doctor told me, I did have ct, and the neck problem, so I

thought maybe he would be a help. I will know tomorrow. At least this way when

I meet with my attorney we can talk about it all. I just can't believe this has

happened. After beating them for eight years.

Lynn

a wrote:

> Lynn,

> I'm really sorry that you lost your case, and also quite surprised. I know

> your neck problem started before the RA diagnosis. Your attorney has a lot

> of time vested in this case, so I'm sure if he thinks he can win an appeal,

> he'll do it. The RA may play a part in your disability, but it doesn't take

> away your injury.

> Sending you hugs,

> a

>

> > Hi Everyone, a and ,

> > I have been here the last few days in complete disbelief. I lost my

> > case in court with Worker Compensation. The judge said she knows I am

> > very disabled but it is not from my former job. So she ruled in favor

> > of wc. My attorney was just a shocked as I am. I still don't think I

> > believe it. It seems to be the fact that I have RA is what turned the

> > corner. Never mind that I probably got the RA from the neck injury. I

> > don't know if we are going to appeal or not, I am still to shocked. My

> > attorney wants to go over my finances with me. I know if I had gotten a

> > settlement social security and another insurance company I deal with

> > would have both deducted the amount from what they give me. Kind of

> > everyone would have had dibbs on the settlement. I just don't know what

> > will happen in the next week or two. I am just too shocked.

> > Just thought I would let you all know.

> > Lynn (MeMom)

> >

> >

> >

> >

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lynn, i am so sorry you lost your case. i truly understand how you feel. i

know they just don't like to pay. mine wasn't w/c related. but i still lost the

battle with my employer for my benefits. all i could do was pick up the pieces

and now i work part time to pay my bills. i don't know what will happen if i

can't work though. if you can afford it. appeal. i wasn' t fighting for enough

money. no one wanted to take my case. good luck to you and please keep us

informed. kathy in il

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Hi Kathy,

Thanks for your note. I am still in disbelief, I just can't believe it has

happened. I called the ortho doctor that I have gone, he did the deposition for

me, and he said there is nothing he can do. Insurance companies do this stuff

all

the time. I was hoping if would agree to do an EMG, but he wouldn't. So now I

have a meeting with my attorney this week, and we will see what happens. I am

worried because I took out some student loans. I never took out any after I

received ssd, but I have to worry about this too. wc would have had to pay the

loans if we had settled. What a mess. Hope you are doing well.

Lynn (MeMom)

kringlemom@... wrote:

> lynn, i am so sorry you lost your case. i truly understand how you feel. i

> know they just don't like to pay. mine wasn't w/c related. but i still lost

the

> battle with my employer for my benefits. all i could do was pick up the pieces

> and now i work part time to pay my bills. i don't know what will happen if i

> can't work though. if you can afford it. appeal. i wasn' t fighting for enough

> money. no one wanted to take my case. good luck to you and please keep us

> informed. kathy in il

>

>

>

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lynn, maybe you can take out a pell grant. that is what my son got. you need

atleast 2 classes to qualify. they paid for his classes, books, and he got a

check for about 1100.00. i know it is very disappointing. i remember crying in

almost every atty's office i went to. no one would help me and i really felt

that i should win. good luck and you know my thoughts and prayers are with you.

kathy in il

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Hi Kathy,

I am going to college now on financial aid. I never took out a student loan

once I was put on ss. Thank you for your help, I appreciate it.

How are you feeling. Aren't these attorneys awful. Attorneys, judges, I have

had

it with them all.

Lynn

kringlemom@... wrote:

> lynn, maybe you can take out a pell grant. that is what my son got. you need

> atleast 2 classes to qualify. they paid for his classes, books, and he got a

> check for about 1100.00. i know it is very disappointing. i remember crying in

> almost every atty's office i went to. no one would help me and i really felt

> that i should win. good luck and you know my thoughts and prayers are with

you.

> kathy in il

>

>

>

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My son was just put in SSI. He's 20. What do you have to do to get financial

aid for college? He is only capable of taking one class at a time. Will there

be a lot of paperwork for that? This is a new venture for me. I'm still

catching my breath after the long ordeal of getting SSI. Not sure I'm ready yet

to tread new waters!

Becky

Re: [ ] hello

Hi Kathy,

I am going to college now on financial aid. I never took out a student

loan

once I was put on ss. Thank you for your help, I appreciate it.

How are you feeling. Aren't these attorneys awful. Attorneys, judges, I have

had

it with them all.

Lynn

kringlemom@... wrote:

> lynn, maybe you can take out a pell grant. that is what my son got. you need

> atleast 2 classes to qualify. they paid for his classes, books, and he got a

> check for about 1100.00. i know it is very disappointing. i remember crying

in

> almost every atty's office i went to. no one would help me and i really felt

> that i should win. good luck and you know my thoughts and prayers are with

you.

> kathy in il

>

>

>

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Hi Becky,

Your son needs to go to the college he wants to go to and talk with the

financial aid office. They will help him. Also, in my state of Pa., to be on

financial aid you have to take at least two classes per semester. Also, when I

started school I went to the Office for Students With Disabilities. This was a

tremendous help. They

will inform teachers what he can and can not do. Plus they will give him

permission to record the classes ( wonderful help), longer time on test,

whatever he needs. Have him check it out.

Hope this helps.

Lynn (MeMom)

natesmom4@... wrote:

> My son was just put in SSI. He's 20. What do you have to do to get financial

aid for college? He is only capable of taking one class at a time. Will there

be a lot of paperwork for that? This is a new venture for me. I'm still

catching my breath after the long ordeal of getting SSI. Not sure I'm ready yet

to tread new waters!

>

> Becky

> Re: [ ] hello

>

> Hi Kathy,

> I am going to college now on financial aid. I never took out a student

loan

> once I was put on ss. Thank you for your help, I appreciate it.

> How are you feeling. Aren't these attorneys awful. Attorneys, judges, I

have had

> it with them all.

> Lynn

>

> kringlemom@... wrote:

>

> > lynn, maybe you can take out a pell grant. that is what my son got. you

need

> > atleast 2 classes to qualify. they paid for his classes, books, and he got

a

> > check for about 1100.00. i know it is very disappointing. i remember

crying in

> > almost every atty's office i went to. no one would help me and i really

felt

> > that i should win. good luck and you know my thoughts and prayers are with

you.

> > kathy in il

> >

> >

> >

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Thanks for the info! I think taping a class will help. He tried once before

but fell through the system. I was foolish enough to think it would work for

him without me really going and seeing what was available. He was supposed to

be in special services but it did not happen. Maybe next time around it will be

better. He really needs to go to try to do something. He works a few hours a

week but really does need a social life at his age (20) so maybe a class here

and there would help get him on the right track. At least it would help his

self esteem to try again.

Becky

Re: [ ] hello

>

> Hi Kathy,

> I am going to college now on financial aid. I never took out a

student loan

> once I was put on ss. Thank you for your help, I appreciate it.

> How are you feeling. Aren't these attorneys awful. Attorneys, judges, I

have had

> it with them all.

> Lynn

>

> kringlemom@... wrote:

>

> > lynn, maybe you can take out a pell grant. that is what my son got. you

need

> > atleast 2 classes to qualify. they paid for his classes, books, and he

got a

> > check for about 1100.00. i know it is very disappointing. i remember

crying in

> > almost every atty's office i went to. no one would help me and i really

felt

> > that i should win. good luck and you know my thoughts and prayers are

with you.

> > kathy in il

> >

> >

> >

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Becky,

Get him the financial aid and tell him to just pick two classes he something

he is really interested in. That is how I started and it works out well.

Lynn

natesmom4@... wrote:

> Thanks for the info! I think taping a class will help. He tried once before

but fell through the system. I was foolish enough to think it would work for

him without me really going and seeing what was available. He was supposed to

be in special services but it did not happen. Maybe next time around it will be

better. He really needs to go to try to do something. He works a few hours a

week but really does need a social life at his age (20) so maybe a class here

and there would help get him on the right track. At least it would help his

self esteem to try again.

>

> Becky

> Re: [ ] hello

> >

> > Hi Kathy,

> > I am going to college now on financial aid. I never took out a

student loan

> > once I was put on ss. Thank you for your help, I appreciate it.

> > How are you feeling. Aren't these attorneys awful. Attorneys, judges,

I have had

> > it with them all.

> > Lynn

> >

> > kringlemom@... wrote:

> >

> > > lynn, maybe you can take out a pell grant. that is what my son got.

you need

> > > atleast 2 classes to qualify. they paid for his classes, books, and he

got a

> > > check for about 1100.00. i know it is very disappointing. i remember

crying in

> > > almost every atty's office i went to. no one would help me and i

really felt

> > > that i should win. good luck and you know my thoughts and prayers are

with you.

> > > kathy in il

> > >

> > >

> > >

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When he tried before they would only let him choose from general studies at the

junior college. They said he had to be on a " path " or something similar. That

is not required? If he starts again with English or something equally boring to

him at the moment, he will not continue.

Becky

Re: [ ] hello

> >

> > Hi Kathy,

> > I am going to college now on financial aid. I never took out a

student loan

> > once I was put on ss. Thank you for your help, I appreciate it.

> > How are you feeling. Aren't these attorneys awful. Attorneys,

judges, I have had

> > it with them all.

> > Lynn

> >

> > kringlemom@... wrote:

> >

> > > lynn, maybe you can take out a pell grant. that is what my son got.

you need

> > > atleast 2 classes to qualify. they paid for his classes, books, and

he got a

> > > check for about 1100.00. i know it is very disappointing. i remember

crying in

> > > almost every atty's office i went to. no one would help me and i

really felt

> > > that i should win. good luck and you know my thoughts and prayers

are with you.

> > > kathy in il

> > >

> > >

> > >

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What an incentive!

Becky

Re: [ ] hello

yes my son applied for the pell grant with 2 classes. they paid for his

school, his books, plus he got a check for 1100.00!! kathy in il

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