-OT

[Guest guest]

In a message dated 12/27/00 2:58:08 PM Eastern Standard Time,

chivalry@... writes:

<< We have CRS [Childrens Rehabilitative Services here and we submitted

Skyler for that, though he physically qualifies for their support they pay

based on income. Since his mother makes more than [get this] $4000 a year,

Skyler gets a financial benefit of " 0% " . So, yes they will treat him, but we

have to flip the entire bill.

The problem we are facing is that Skylers mother may need to change jobs as

her current one has her very unhappy. If she does we will most likely loose

insurance coverage. If even partly lost it could mean that our medical costs

jump considerably. The cost of just his monthly medicines exceeds $2000 so

an 80% program would leave us owing $400, not to mention the ongoing

hospitalizations and treatment at UCLA. >>

,

I'm not sure why you didn't qualify for CRS based on how little his mother

makes, unless they consider your income. What I have learned from dealing

with Tally's illness (remember he is systemic as well so I know what you are

feeling with the roller coaster symptoms) is that until Tally is in

remission, I might as well stay in school. I have flexibility of schedule,

I live on campus so everything is substidized, he qualifies for every

program under the sun and I don't have to worry as much about where I'll be

in a few years. It's not quite what I had hoped for in life but it's a

happy life.

I fought tooth and nail from putting Tally on Enbrel. I know the

potential risks and when his RD finally said that he must be on it twice a

week, I was devestated. He wrote me a prescription for a three month supply

and guess how much it came out to? The total was almost $3700. I carried

the meds out to car and thought to myself, that I am carrying in medicine

for three months, more than I pay for tuition. Had I not been in school, I

would never have been able to afford his medicine.

I still cry many nights because of the unfairness of it all. I'll always

remember Diego, who you won't remember as you joined recently. I do know

when I came home from the hospital that I felt as though I had no idea of

even where to go. I called the university and talked to their representative

for special needs and they called me back with a whole lot of information on

what to do and how to go about getting it done. Then were the ones who made

some of the calls to have me transfered and I have been so surprised at the

people who I encounter now who help, not because they have to, but because

they know what I'm dealing with. I wish you were closer as then I would know

who to call, but I'm not.

Just know that the path your on is well traveled and somehow, there are

ways through it. Don't give up, be stubborn, and always inch forward.

kathy

[Guest guest]

Kathy,

Just got back from the hearing. I was able to get the postponement - barely.

So we will go back to court on the 28th of February. This should allow plenty

of time for preparation. Skylers mother submitted for this program after one of

a long string of referrals. Up until today I was not entirely sure what this

was all about. What they provide for is institutionalization - or

hospitalization. Skyler was turned down because when he was reviewed he was

just back from UCLA and feeling the effects of strong steroid doses. When she

filed with them he was completely debhilitated, unable to even sit up or hold a

cup. We could not sleep or even take a phone call because he was in constant

pain and had a fever of over 105. The frustrating part of this disease is it is

often so invisible or unseen to these organizations. It is a rollercoaster and

we need some organization to fall back on just in case there is a life change or

illness change that catches us at a bad time.

They don't stop to ask themselves 'What happens to this child if he is unable to

get his prednisone or Methotrexate refilled'. They don't stop to realize that

all it takes is a day or two for a flare to put a child in so much pain or

danger that it can be life threatening. Yes this is rare, but it is a

possibility and Skylers case is living proof.

Sorry for going off there a little, but I think I have expressed the frustration

of many parents here.

We have CRS [Childrens Rehabilitative Services here and we submitted Skyler for

that, though he physically qualifies for their support they pay based on income.

Since his mother makes more than [get this] $4000 a year, Skyler gets a

financial benefit of " 0% " . So, yes they will treat him, but we have to flip the

entire bill.

The problem we are facing is that Skylers mother may need to change jobs as her

current one has her very unhappy. If she does we will most likely loose

insurance coverage. If even partly lost it could mean that our medical costs

jump considerably. The cost of just his monthly medicines exceeds $2000 so an

80% program would leave us owing $400, not to mention the ongoing

hospitalizations and treatment at UCLA.

I really think the route we need to go is SSDI [social Security Disability

Insurance] but I need to look back in my notes to remember where and how to get

this going. Still, every person I know of that has tried to get this has ahd to

appeal twice before they get anywhere.

Somewhere out there is a program that can help, but finding it is unreal. Then

we must consider the impact if it means changing all the Dr's.

What a challenging life we all face.

Thanks for caring Kathy. And thanks for listening.

-OT

,

I am so amazed that how the difference in states makes such a huge

difference in support. Tally was diagnosed a year ago this month with

systemic and by April, he had been approved for SSI. It took a month to get

his approved for a program called Children's rehabilitative services, which

is

[Guest guest]

,

I was wondering what state do you live in? The reason I ask is that I live

in Pennsylvania. In the state of pa you can apply for the Medical

Assistance card through a loophole, which means regardless what the parents

income is, if a child has a certain condition or disability he/she can

qualify for the medical card. I guess I am very fortunate because if it

wasn't for this medical card I would be in big trouble - I would not be able

to afford my sons medicine (especially his IVIG treatments). I am also a

telephone counselor for a program for special needs children. It is very

sad when I hear about the problems parents have concerning insurance. I am

pretty sure you have tried locating different resources, but I really would

like to see if I could somehow help.

,

>From: akally@...

>Reply- egroups

> egroups

>Subject: Re: -OT

>Date: Wed, 27 Dec 2000 15:43:19 EST

>

>In a message dated 12/27/00 2:58:08 PM Eastern Standard Time,

>chivalry@... writes:

>

><< We have CRS [Childrens Rehabilitative Services here and we submitted

>Skyler for that, though he physically qualifies for their support they pay

>based on income. Since his mother makes more than [get this] $4000 a year,

>Skyler gets a financial benefit of " 0% " . So, yes they will treat him, but

>we

>have to flip the entire bill.

> The problem we are facing is that Skylers mother may need to change jobs

>as

>her current one has her very unhappy. If she does we will most likely

>loose

>insurance coverage. If even partly lost it could mean that our medical

>costs

>jump considerably. The cost of just his monthly medicines exceeds $2000 so

>an 80% program would leave us owing $400, not to mention the ongoing

>hospitalizations and treatment at UCLA. >>

>

>

>,

> I'm not sure why you didn't qualify for CRS based on how little his

>mother

>makes, unless they consider your income. What I have learned from

>dealing

>with Tally's illness (remember he is systemic as well so I know what you

>are

>feeling with the roller coaster symptoms) is that until Tally is in

>remission, I might as well stay in school. I have flexibility of

>schedule,

>I live on campus so everything is substidized, he qualifies for every

>program under the sun and I don't have to worry as much about where I'll be

>in a few years. It's not quite what I had hoped for in life but it's a

>happy life.

> I fought tooth and nail from putting Tally on Enbrel. I know the

>potential risks and when his RD finally said that he must be on it twice a

>week, I was devestated. He wrote me a prescription for a three month

>supply

>and guess how much it came out to? The total was almost $3700. I carried

>the meds out to car and thought to myself, that I am carrying in medicine

>for three months, more than I pay for tuition. Had I not been in school,

>I

>would never have been able to afford his medicine.

> I still cry many nights because of the unfairness of it all. I'll

>always

>remember Diego, who you won't remember as you joined recently. I do know

>when I came home from the hospital that I felt as though I had no idea of

>even where to go. I called the university and talked to their

>representative

>for special needs and they called me back with a whole lot of information

>on

>what to do and how to go about getting it done. Then were the ones who

>made

>some of the calls to have me transfered and I have been so surprised at the

>people who I encounter now who help, not because they have to, but because

>they know what I'm dealing with. I wish you were closer as then I would

>know

>who to call, but I'm not.

> Just know that the path your on is well traveled and somehow, there are

>ways through it. Don't give up, be stubborn, and always inch forward.

>

>kathy

_________________________________________________________________

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[Guest guest]

,

I live in Phoenix Arizona.

A while back I had a phone call from someone in the group who said to look into

any state or fed program that is funded by the Katy Beckett program. This has

turned up void as none of the social workers or program reps has heard of this.

I am open to just about anything at this point so any leads you have would be

appreciated.

Re: -OT

>Date: Wed, 27 Dec 2000 15:43:19 EST

>

>In a message dated 12/27/00 2:58:08 PM Eastern Standard Time,

>chivalry@... writes:

>

><< We have CRS [Childrens Rehabilitative Services here and we submitted

>Skyler for that, though he physically qualifies for their support they pay

>based on income. Since his mother makes more than [get this] $4000 a year,

>Skyler gets a financial benefit of " 0% " . So, yes they will treat him, but

>we

>have to flip the entire bill.

> The problem we are facing is that Skylers mother may need to change jobs

>as

>her current one has her very unhappy. If she does we will most likely

>loose

>insurance coverage. If even partly lost it could mean that our medical

>costs

>jump considerably. The cost of just his monthly medicines exceeds $2000 so

>an 80% program would leave us owing $400, not to mention the ongoing

>hospitalizations and treatment at UCLA. >>

>

>

>,

> I'm not sure why you didn't qualify for CRS based on how little his

>mother

>makes, unless they consider your income. What I have learned from

>dealing

>with Tally's illness (remember he is systemic as well so I know what you

>are

>feeling with the roller coaster symptoms) is that until Tally is in

>remission, I might as well stay in school. I have flexibility of

>schedule,

>I live on campus so everything is substidized, he qualifies for every

>program under the sun and I don't have to worry as much about where I'll be

>in a few years. It's not quite what I had hoped for in life but it's a

>happy life.

> I fought tooth and nail from putting Tally on Enbrel. I know the

>potential risks and when his RD finally said that he must be on it twice a

>week, I was devestated. He wrote me a prescription for a three month

>supply

>and guess how much it came out to? The total was almost $3700. I carried

>the meds out to car and thought to myself, that I am carrying in medicine

>for three months, more than I pay for tuition. Had I not been in school,

>I

>would never have been able to afford his medicine.

> I still cry many nights because of the unfairness of it all. I'll

>always

>remember Diego, who you won't remember as you joined recently. I do know

>when I came home from the hospital that I felt as though I had no idea of

>even where to go. I called the university and talked to their

>representative

>for special needs and they called me back with a whole lot of information

>on

>what to do and how to go about getting it done. Then were the ones who

>made

>some of the calls to have me transfered and I have been so surprised at the

>people who I encounter now who help, not because they have to, but because

>they know what I'm dealing with. I wish you were closer as then I would

>know

>who to call, but I'm not.

> Just know that the path your on is well traveled and somehow, there are

>ways through it. Don't give up, be stubborn, and always inch forward.

>

>kathy

_________________________________________________________________

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[Guest guest]

Hi ,

This must be so incredibly frustrating for you. I can't believe it's

taken so much time and effort to advocate on behalf of Skyler to try to

secure financial coverage for his ongoing health and medical needs ...

and that the issue still hasn't been resolved! Please phone the local

Social Security office and ask them to send you the necessary paperwork

to apply for SSDI.

You're right. Most times the application is denied when you turn it in.

I think it's upwards of 80% of the time. As soon as you get the denial,

process the appeals paperwork. The very same day, if possible. If the

case isn't accepted at that point, seek a disability attorney. They

won't charge you anything up front. They only get paid if your case is

approved. They will take a percentage. Don't remember how much, though.

What ever happened to the media contacts you made? Have they been

following up with this? Did they ever cover Skylar's story? Geez ... at

this point, I'd be about ready to write to the Secretary of Health! The

squeeky wheel usually gets oiled first. I can't understand why things

have to be so difficult but please, keep persevering. Don't give up.

Take Care,

Georgina

V. wrote:

>

> Kathy,

> Just got back from the hearing. I was able to get the postponement - barely.

So we will go back to court on the 28th of February. This should allow plenty

of time for preparation. Skylers mother submitted for this program after one of

a long string of referrals. Up until today I was not entirely sure what this

was all about. What they provide for is institutionalization - or

hospitalization. Skyler was turned down because when he was reviewed he was

just back from UCLA and feeling the effects of strong steroid doses. When she

filed with them he was completely debhilitated, unable to even sit up or hold a

cup. We could not sleep or even take a phone call because he was in constant

pain and had a fever of over 105. The frustrating part of this disease is it is

often so invisible or unseen to these organizations. It is a rollercoaster and

we need some organization to fall back on just in case there is a life change or

illness change that catches us at a bad time.

> They don't stop to ask themselves 'What happens to this child if he is unable

to get his prednisone or Methotrexate refilled'. They don't stop to realize

that all it takes is a day or two for a flare to put a child in so much pain or

danger that it can be life threatening. Yes this is rare, but it is a

possibility and Skylers case is living proof.

> Sorry for going off there a little, but I think I have expressed the

frustration of many parents here.

>

> We have CRS [Childrens Rehabilitative Services here and we submitted Skyler

for that, though he physically qualifies for their support they pay based on

income. Since his mother makes more than [get this] $4000 a year, Skyler gets a

financial benefit of " 0% " . So, yes they will treat him, but we have to flip the

entire bill.

> The problem we are facing is that Skylers mother may need to change jobs as

her current one has her very unhappy. If she does we will most likely loose

insurance coverage. If even partly lost it could mean that our medical costs

jump considerably. The cost of just his monthly medicines exceeds $2000 so an

80% program would leave us owing $400, not to mention the ongoing

hospitalizations and treatment at UCLA.

> I really think the route we need to go is SSDI [social Security Disability

Insurance] but I need to look back in my notes to remember where and how to get

this going. Still, every person I know of that has tried to get this has ahd to

appeal twice before they get anywhere.

>

> Somewhere out there is a program that can help, but finding it is unreal.

Then we must consider the impact if it means changing all the Dr's.

> What a challenging life we all face.

> Thanks for caring Kathy. And thanks for listening.

>

>

> -OT

>

> ,

> I am so amazed that how the difference in states makes such a huge

> difference in support. Tally was diagnosed a year ago this month with

> systemic and by April, he had been approved for SSI. It took a month to

get

> his approved for a program called Children's rehabilitative services, which

> is

[Guest guest]

In a message dated 8/25/2003 9:01:11 PM Eastern Daylight Time, nowjustjules@... writes:

but

gosh, at 3am, one little whimper and I was flying through the night

like a superhero...i don't even know if I was completely awake for a

few of those hours!

Thanks for the chuckle- that cracked me up, and I can relate!

'mom

[Guest guest]

that's so sweet - but then again that's why I love this list - no matter how many times I shoot myself in the foot the support is there,

“The greater the obstacle, the more glory in overcoming it.”

- Baptiste Moliere

-ot

Congratulations on getting closer to your goal.I'm so proud of you. I now I don't know you but I'm proud of everyone. To have the willingness and self control to shed those pounds, that's something to be proud of.Good for you,LillianTo unsubscribe DO NOT send a message to the list.Please click on this link and unsubscribe:100-plus/join

[Guest guest]

, would it be possible to use a text color that is a little darker?

It is very difficult to read the pink on white and I want to read what you

have to say.

Thanks,

Ann

[Guest guest]

> , would it be possible to use a text color that is a little darker?

> It is very difficult to read the pink on white

I don't remember having a problem reading any messages, so probably the one

you refer to was pink text on a dark colored background stationery, and your

email reader stripped the background graphic off. I read that OE 6 can do

that. That's probably what happed a few weeks ago when you complained about

my post with the green text. That, too was stationery that looked fine to

most others but just light text to those who strip graphics.

Those of us who use stationery from time to time should try remember this

and use only light colored backgrounds and darker text.

[Guest guest]

will do

“The greater the obstacle, the more glory in overcoming it.”

- Baptiste Moliere

Re: -ot

> , would it be possible to use a text color that is a little darker?> It is very difficult to read the pink on whiteI don't remember having a problem reading any messages, so probably the oneyou refer to was pink text on a dark colored background stationery, and youremail reader stripped the background graphic off. I read that OE 6 can dothat. That's probably what happed a few weeks ago when you complained aboutmy post with the green text. That, too was stationery that looked fine tomost others but just light text to those who strip graphics.Those of us who use stationery from time to time should try remember thisand use only light colored backgrounds and darker text.

[Guest guest]

When I use an email reader that dont accept stationary I just hold the "ctrl" key and the 'A' key (select all) and it highlights the text making it easier to read.

Jelayne * just my 2 cents *

-- Re: -ot

> , would it be possible to use a text color that is a little darker?> It is very difficult to read the pink on whiteI don't remember having a problem reading any messages, so probably the oneyou refer to was pink text on a dark colored background stationery, and youremail reader stripped the background graphic off. I read that OE 6 can dothat. That's probably what happed a few weeks ago when you complained aboutmy post with the green text. That, too was stationery that looked fine tomost others but just light text to those who strip graphics.Those of us who use stationery from time to time should try remember thisand use only light colored backgrounds and darker text.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thank you! The burgundy is much easier to read.

My dh used the patch and quit smoking after 23 years. He started at 14 and

quit when I was pregnant with my oldest. Unfortunately he still craves

cigarettes every day.

Ann

[Guest guest]

I tried the gum - uck I think I'd rather eat the cig. my former smoker has been wearing the patch for just about a year now - gets her through the day most of the time but she smokes on the weekends and a few at night. my mom swore the oj cut her cravings to almost nil - she'd take a puff every once in awhile and go yuck poo and all that and be done with it for another 8-10 months - worked for her the last 5 yrs of her life. I tried that and it didn't work - I thought yuck - tried again a few days later still yuck = then again and it wasn't so yucky - how dumb am I... no need to answer.

“The greater the obstacle, the more glory in overcoming it.”

- Baptiste Moliere

Re: -ot

Thank you! The burgundy is much easier to read.My dh used the patch and quit smoking after 23 years. He started at 14 andquit when I was pregnant with my oldest. Unfortunately he still cravescigarettes every day. Ann